Toby, 10-12 y.o. Spaniel Mix - Toby has crossed The Bridge

[tobybarnum]

My dog Toby most likely has Cushings, and is undergoing the LDDS test right now. I have a question for Squirts mom: when you say that you have no fear of Lyso, but Trilo is a different story, can you elaborate? I am doing lots of research about those two.

[labblab]

Hello and welcome to you and Toby!

I noticed you had posted this reply on another member's thread, but I've taken the liberty of moving it so as to create a brand new thread for the two of you. Squirt's Mom (Leslie) may not be able to post a reply right away, so I want to make sure that you have the chance to also talk with other folks in the meantime.

If you don't mind, it will help us all a lot if you'll tell us more about Toby's health history, Cushing's symptoms, and any other related testing in addition to the LDDS. If you'll also tell us about Toby's breed and his weight, that'll be a big help, too. Sorry for so many questions to begin with, but this info will help us give you the most accurate feedback possible.

Looking forward to reading more about your Toby,
Marianne

[tobybarnum]

My dog Toby has had a ravenous appetite, weight loss, excessive drinking and peeing, muscle wasting in the rear legs, and a recent UTI. He is 10-12 years old. He's a mix (spaniel? Basset? Border Collie?), 40 lbs. He had the ACHT test, which was negative, an ultrasound which showed significantly enlarged adrenals (both), and a strongly positive urine creatinine/cortisol ratio test (53, I think). He is currently undergoing the LDDS test, and I should have results tomorrow. My vet feels strongly that, no matter what the result, he has Cushings. I am researching the 2 main options and have encountered a lot of contradictory opinions from knowledgeable sources about the relative risks of Lysodren vs. Trilostane. I saw a posting here in which someone was comfortable with Lysodren but not Trilo, and was hoping for more details. Thanks for the enormously helpful site! I'd also be grateful if anyone has a vet in NYC with a lot of Cushing's experience that they could recommend for a second opinion about treatment.

[littleone1]

Corky and I also want to welcome you and Toby.

Corky has an adrenal tumor and is being treated with Trilostane. He has been taking Trilo for 16 months now, and he hasn't had any negative effects. He is actually now on 3x daily dosing with Trilo, as this is better for some furbabies.

Everyone has their own opinions about the treatment options, and my personal opinion is that I and my IMS both feel more comfortable treating Corky with Trilo.

Trilo can increase the levels of some of the intermediate hormones. Corky has had 2 full adrenal panels done, and even though there has been some increase in some of the levels, they have not caused any problems for Corky.

The treatment plans vary with each individual furbaby. Some do better on Trilo, and some do better on Lyso.

Hopefully you will find a good vet or IMS that is experienced in treating cushings.

Terri

[Harley PoMMom]

IMO, Lysodren/Mitotane or Vetoryl/Trilostane is safe when monitored appropriately and with owner observation and each medicine can have similar adverse effects. So "owner observation" is always a crucial component of treatment.

Each has it's pros and cons, they work differently, they are both safe when monitored appropriately, yet they both can have the same and serious risks and adverse effects.

One or the other may work better for an individual dog.

Another important consideration is the degree of experience your vet has with whatever treatment he/she chooses. Cushing's requires a good partnership with one's vet.

Love and hugs,
Lori

[tobybarnum]

Thanks, is it better to try one or the other first? Can one switch between them if needed?

[addy]

Hi and Welcome,

You can switch from one drug to the other but you have to go through a wash out period. You would need minimum 30 days and I have read some vets saying as much as 6 weeks.

It really comes down to which drug your vet has the most experience with and also what if any other underlining conditions your dog may have or is being treated for.

Zoe has elevated intermediate hormones as well as high cortisol. My IMS has more experience with Lysodren. Zoe also has colitis so is on daily medication for that. When we start to treat her we will use Lysodren. If she has a bad reaction to that because of her colitis, we will go through the wash out period and try the Trilostane. The Lysodren should help her intermediate hormones so that is why we picked that first to try. Both drugs can cause gastric upset though it is the number one side effect of Lysodren so I had to consider that as well. If your dog is on metronidazole, for example, as Zoe is, giving Tagament concurrently affects the liver's ability to process the metronidazole so it can be like giving a higher dose of metronidazole which can increase the chance of it's side effects. So if Zoe has a problem, we would have to discontinue the Lysodren.

I know it can be a daunting decision to make.:(

Glad you found us.

Hugs,
Addy

[Wolfpak]

Hi Toby,
the published medical literature on this topic reports a few rare instances of sudden collapse and death associated with Vetoryl/Trilostane, but not Lysodren/Mitotane. While their actions are similar, Lysodren appears to be the old stand by, and Trilostane was just approved for canine Cushing's treatment in the US in 2009, at least according to the readings & research I've seen to date.

Either seems a reasonable approach, I've read up on both just recently, and given that PDH appears to be your diagnosis, it would be good to read as much as possible, and speak to your vet about which drug they are most comfortable with, given their experience.

My vet has been in practice for about 40yrs, has used both, but recently has used Trilostane preferentially since around the time of its US approval.

[tobybarnum]

It's the sudden death and collapse risk that scares me. How frequent is that? If it's much of a risk, I'll go with Lysodren.

[tobybarnum]

Toby's results for the LDDS test were within range at 4 hours, and 2.5 at 8 hours, so Cushing's has been confirmed. Just to recap, both adrenals were enlarged in an ultrasound and the urine creatinine/cortisol test came back at 53. A previous ACTH test a month ago was negative.
My vet only has experience with Lysodren, but is willing to try Trilo if that's what I want. Is there a downside to just going with the Lyso?
Thanks!

[jrepac]

Both drugs have some risks attached and your pet must be monitored regularly....but, as I understand it, the method of action is different for each. Given the choice, I would lean towards trilo, but you should discuss the options w/your vet to understand each one fully.


Jeff & Angel Mandy

[Harley PoMMom]

Lysodren works by selectively eroding the layers of the adrenal gland that produce corticosteroid hormones, which limits the ability of the gland to produce cortisone.

There are two phases of Lysodren therapy: (1) an initial induction phase, or loading dose phase, which is designed to gain immediate control of the disease; and (2) a lifelong maintenance phase designed to prevent recurrence of the clinical signs of the disease.

Trilostane blocks production of glucocorticoids and to a lesser extent,
mineralocorticoids and sex hormones while steroid precursor levels increase.

With Trilostane there is no induction or loading phase.


Angiotensin Converting Enzyme Inhibitors

The risk of hyperkalemia developing should be considered if trilostane is used in conjunction with potassium-sparing diuretics or ACE inhibitors. The concurrent use of such drugs should be subject to a risk-benefit analysis by the veterinarian, as there have been a few reports of deaths (including sudden death) in dogs when treated concurrently with trilostane and an ACE inhibitor.
http://www.drugs.com/vet/vetoryl-30-mg-can.html

Love and hugs,
Lori

[tobybarnum]

Thanks everyone, I need the support! This decision is a bit overwhelming, since there are a lot of different opinions out there!
I talked with both my current vet and my ex-vet (she moved out of the area), and am currently leaning towards trying Trilo first, but have an appointment with an IMS on the 28th, so will wait until then to decide for certain. It's all pretty worrisome!

[lulusmom]

This decision is a bit overwhelming, since there are a lot of different opinions out there!
I talked with both my current vet and my ex-vet (she moved out of the area), and am currently leaning towards trying Trilo first, but have an appointment with an IMS on the 28th, so will wait until then to decide for certain. It's all pretty worrisome!

You are correct, there are a lot of opinions out there on the web, some are credible, some are stupid and some are just plain wrong. You'll find that most, if not all, the opinions here are educated ones, based on first hand experience. I think the general concensus amongst members is that both drugs are very effective. One thing I've learned with two cushdogs, who have treated with both drugs. and six years of research under my belt, is that treatment is easier facilitated without side effects if the vet is familiar with the drug, follows treatment protocol and the pet owner takes the time to educate themselves about the drug they choose for their dog. It is when a dog is without benefit of those things that the situtation can become worrisome.

We're here to help you learn and become more comfortable with advocating for Toby. The more you learn, the more comfortable you will become and before you know it, you'll be an old hand.

Glynda

[labblab]

It's the sudden death and collapse risk that scares me. How frequent is that? If it's much of a risk, I'll go with Lysodren.
I just want to "second" everything that Glynda ("lulusmom") stated so beautifully in her preceding reply!

Also, since you are wanting to get some specific data about the risks of severe adverse effects with trilostane, here is some information that is contained in the U.S. Product Insert for Vetoryl (brandname trilostane):


In a US field study with 107 dogs, adrenal necrosis/rupture (two dogs) and hypoadrenocorticism (two dogs) were the most severe adverse reactions in the study. One dog died suddenly of adrenal necrosis, approximately one week after starting trilostane therapy. One dog developed an adrenal rupture, believed to be secondary to adrenal necrosis, approximately six weeks after starting trilostane therapy. This dog responded to trilostane discontinuation and supportive care. Two dogs developed hypoadrenocorticism during the study. These two dogs had clinical signs consistent with hypoadrenocorticism (lethargy, anorexia, collapse) and post-ACTH cortisol levels of =0.3 μg/dL. Both dogs responded to trilostane discontinuation and supportive care, and one dog required continued treatment for hypoadrenocorticism (glucocorticoids and mineralocorticoids) after the acute presentation.

You can find additional information about both short-term and long-term adverse reactions in the Product Insert, as well as lots of other helpful information related to trilostane dosing and monitoring.

http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

Do bear in mind that the product information for virtually any prescription medication has the potential to sound quite ominous, since the FDA requires that all possible side effects and adverse events are to be summarized. Also, there is no comparable summary for you to review related to Lysodren, since Lysodren is not formally approved as a veterinary medication (it has been used for years to treat dogs, but it is formally approved by the FDA only as a human medication). But since you've asked for actual, hard data related to trilostane risks, I wanted to make this information available to you.

Marianne

[tobybarnum]

Thanks everyone! Just an update on Toby- he is having the full adrenal panel run at Tennessee, and I expect results in a few days, after which the IMS will help me choose a treatment. I'll no doubt need more support then, but in the meantime, I'm grateful to you all!
Dawn

[lulusmom]

Hi Dawn,

The UTK adrenal panel takes longer than most tests. The last time I had one done for my dog, it took between 10 and 14 days. We'll be looking forward to hearing about the results and don't you worry...we'll be here to help you get Toby back on the right track.

Glynda

[mypuppy]

Hi Dawn and Toby,

The "experts" (as I refer to them here), have spoken. My baby suffers from pituitary cushings and has been successfully treated with Vetoryl (Brand name for trilostane) for over a year now. I know how scared you are with deciding which treatment to choose from. Every single one of us on this forum have been in your shoes at one point or another with our precious babies. When my Princess started with unusual symptoms I took her to her gp and he mis-diagnosed and said Princess was exhibiting these symptoms out of bad behavior. WHAT???????? I referred myself to an IMS and she immediately diagnosed Cushings after performing all the necessary tests. As you I was confused, frightened when I heard about the possible side effects of the medications. In fact the same gp that blatantly told me my dog was acting out of bad behavior also told me not to treat dog. I then joined this forum and was able to compose myself and make educated decisions that lead me to my dog's method of treatment. I really don't know where my Princess would be right now had it not been for the outpour of support from these wonderful, caring people. Their support throughout my journey has been priceless. Do not get discouraged in your plight, stay on and learn as much as possible and keep the lines of communication open with your IMS always. I am hoping that you will get some conclusive answers soon in order to proceed with treatment. in the meantime welcome to you and your precious Toby. Warm regards. Jeanette and Princess

[addy]

Hi,

Because you are going down the UTK adrenal panel road I thought I would share with you:

My Zoe has had two UTK adrenal panels done and they do take some time about 2 weeks. In January I waited 3 weeks. Zoe had high intermediate hormones as well as cortisol when we tested her last May. Because she also has colitis which was uncontrolled, I opted for melatonin and lignans to start until we could see what was happening with her colitis. Just as we got things under control, we again lost control of her colitis at the end of October. To make a long story short, I reran the UTK panel the beginning of January. Her estradiol is now normal, her aldosterone is normal and her progesterone and 17OH are not normal but did come down. Her cortisol rose.


As an FYI- Dr. Oliver from UTK will recommend Lysodren for dogs with elevated intermediate hormones before recommending Trilostane as Trilostane can increase estradiol and the 17OH. This could take anywhere from a few weeks to months. Lysodren should lower the intermediate hormones and melatonin and lignans may also lower intermediate hormones. Dr. Oliver told me his studies show those hormones seem to do the same thing as cortisol, especially androstenedione and estradiol.

On the flip side- Dr. Allen from Dechra (Vetoryl manufacturer) has told me 80% of dogs with hormone levels similar to my Zoes can be treated successfully with Vetoryl which means resolution of clincial signs due to Cushiings and as long as clincial signs iimprove the other hormones don't matter. And to further that arguement, Dr. Peterson, a respected New York endoctronologist has told me he feels the issue of elevated intermediate hormones from Triolstane is theorectical.

Now, I hope I have not totally boggled your mind as mine has been. :eek::rolleyes: There are respected opinions on both sides. For me it is boiling down to which drug my IMS has most experience with and is comfortable with.

Keep in mind, if one drug does not work out you can do a wash out period and switch.

Hugs,
Addy

[tobybarnum]

Toby's adrenal panel came back, and here's the results:

Cortisol: baseline 64.9 (normal 2.0-56.5), post ACTH 143.6 (normal 70.6-151.2)
Androstenedione: baseline 0.38 (norm. 0.05-0.36, post 1.61 (norm. 0.24-2.90)
Estradiol: base 105.7 (norm 23.1-65.1), post 110.1 (norm. 23.3-69.4)
Progesterone: base 0.48 (norm 0.03-0.17), post 1.75 (norm 0.22-1.45)
17 OH Progesterone and aldosterone were normal.
Does this mean atypical Cushings, or normal? Does it matter what it's called? Just a reminder- his initial ACTH test for Cushing's was negative, but the LDDS and urine tests were positive, and he had very enlarged bilateral adrenals on an ultrasound.

The internal medicine specialist recommended Lysodren, 250 mg 2X daily, and I've given him the first dose. She also dispensed prednisone with careful instructions.
Should I be giving melatonin/lignans/milk thistle as well?
Thanks for all the help!
Dawn and Toby
PS How do I put Toby's picture up?

[tobybarnum]

My dog Toby was diagnosed with Cushings a few weeks ago.His adrenal panel came back, and here's the results:

Cortisol: baseline 64.9 (normal 2.0-56.5), post ACTH 143.6 (normal 70.6-151.2)
Androstenedione: baseline 0.38 (norm. 0.05-0.36, post 1.61 (norm. 0.24-2.90)
Estradiol: base 105.7 (norm 23.1-65.1), post 110.1 (norm. 23.3-69.4)
Progesterone: base 0.48 (norm 0.03-0.17), post 1.75 (norm 0.22-1.45)
17 OH Progesterone and aldosterone were normal.
Does this mean atypical Cushings, or normal? Does it matter what it's called? Just a reminder from my earlier post- he's 10-12 years old, 40 pounds. His initial ACTH test for Cushing's was negative, but the LDDS and urine tests were positive, and he had very enlarged bilateral adrenals on an ultrasound.

The internal medicine specialist recommended Lysodren, 250 mg 2X daily, and I've given him the first 3 doses- no effects yet. She also dispensed prednisone with careful instructions.
Should I be giving melatonin/lignans/milk thistle as well?
Thanks for all the help!
Dawn and Toby
PS How do I put Toby's picture up?

[lulusmom]

Hi Dawn,

I merged your last post with your original thread so that we have all of Toby's information in one place. I have also changed the title. If you don't like it and would like it to read differently, let me know and I'll be happy to change it.

Please keep in frequent touch with us while you load Toby. We are worry warts and want to make sure everything is going well and that Toby does not suffer any unnecessary side effects. If you haven't already read them already, please check out the Lysodren loading instructions and helpful tips in our Helful Resources section. I highly recommend that you print them out and keep them handy for ready reference. Here's a shortcut for you: http://www.k9cushings.com/forum/showthread.php?t=181

The pic beside the username is called an "avatar".

Go to your "User CP" (upper left corner)

Then, click on "Edit Avatar" under "Settings and Options", put a dot in the little circle next to "Custom Avatar" and follow directions in the box for uploading a custom avatar.

Although you can use an image that is posted on any website, most of us use Option 2 - Upload Image From Your Computer.

I hope this helps.

Glynda

[tobybarnum]

Thanks Glynda! Isn't Toby cute? (;-)
No-one as of yet has answered my query about melatonin/lignans. Toby's estriadol and progesterone were high, so I'm wondering if I should add those in or wait until the Lysodren is loaded so as not to inflict too many new things at once.
Thanks for your concern about the loading- I am beyond anxious and watching him like a hawk! So far no changes of any kind, and also no side effects, which is a relief. I think part of me was irrationally afraid that he would just keel over and die after the first dose!!! So much panicky stuff out there on the internet. But this is the ONLY site I"m using now, and so far, so good.
Thank you all for everything!!
Toby's mom (Dawn)

[frijole]

Hi Dawn! My understanding is that if the cortisol is above normal then it is traditional cushings and not atypical. Atypical is when one or more of the other hormones are elevated (but not cortisol). I also believe that lysodren will help lower the other hormones. If I am mistaken no doubt someone will chime in.

During loading be sure not to introduce any new foods or treats. That way you will know if diarrhea or vomiting are caused by lysodren and not something new. Just easier.

Not sure if Toby's symptoms are the appetite, water consumption, or both but watch for changes. Subtle ones. Report in if you have any questions whatsoever. You will do just fine. Kim

[addy]

Hi Dawn,

It is possible the lysodren with bring Toby's intermediate hormones down. If not melatonin and lignans could possibly. They brought my Zoe's estradiol down to normal and it was quite high. It also decreased her progesterone, 17OH and normalized her aldosterone and lowered her androstenedione. Perhaps once you go on a maintenance dose of lysodren you could start the melatonin and lignans. Make sure to read Dr. Oliver's information about it posted on UTK's website.

Hoping everything continues to go well.

Hugs,
Addy

[lulusmom]

Hi Dawn,

I'm glad you got Toby's picture up and yes, he is adorable.

I personally would not worry about giving melatonin and lignans as the lysodren should address the intermediate hormones as well as the cortisol. Melatonin and lignans are treatments for atypical cushing's, not typical cushing's like Toby. Estradiol is the only intermediate that can be found outside of the adrenals and if it is outside the adrenals, lysodren will not have any effect. Having said that, I don't ever recall any dog being treated with Lysodren having unresolved symptoms because the estradiol level is high. If somebody else can remember one, please let us know.

Give the Lysodren a chance to do it's thing before worrying about addressing a problem that probably won't be a problem at all. A lot of members with atypical dogs have had good results with melatonin and lignans but unfortunately, the efficacy rate is actually very low for a good number of dogs. I've heard a number as high as 40% who don't respond.

Glynda

[tobybarnum]

Hi all, this is day 4 1/2 of the loading, and last night Toby only drank about 1/2 cup of water as opposed to the normal 2-3, and while he was eating breakfast he paused and looked at me before finishing. Are we getting there, or am I reading too much into it?
Of course it's Sunday, so plan to take him in tomorrow if this continues. Should I skip tonight's dose?
No side effects so far!
Thanks, Dawn

[lulusmom]

Dawn, both of the things you mention are signs that a dog can be loaded. If it were me, I'd withhold the Lysodren and take Toby in for an acth stim test tomorrow. I'd hold off on the Lysodren until the results are in. If he's not loaded, you'd simply continue loading. If he is loaded, you're vet will prescribe an approprioate maintenance dose. Keep a close eye on your boy because Lysodren has a cumulative effect and it will continue to do it's thing for at least 48 hours after the last dose.

[frijole]

Dawn - I agree with Glynda. Sounds like you did it. Time for the acth test to confirm it. Congrats. Kim

[tobybarnum]

Now of course he confused the issue by scarfing down his dinner as if he hadn't eaten in months! Water consumption during the day is down though...I decided to give him his evening dose, but will skip the morning one, and will take him in tomorrow afternoon for the test. Kind of a compromise.
Hope it's the right thing to do...
Dawn

[frijole]

Dawn, We understand, having been in your shoes it is difficult to know when to cease giving lysodren. When in doubt don't give it because you can't take it back. It continues to work for two days. I agree, no more. Get the acth test done. The worse thing is you aren't there yet... but I bet you are. Keep a close eye to make sure that the levels didn't go too low. As they say "you will know" if they are low. We are here to ask questions if you need us. Kim

[tobybarnum]

OK, we've been through a bit since I posted last- Toby's ACTH check showed that he is not yet loaded; the post-stim level was 13 (1-5 desirable), but since he was reluctant to eat and seemed tired, the vet subsequently ran a CBC, which was normal for a Cushing's dog, no signs of any kidney/liver problems from the Lysodren. She recommended restarting the Lysodren and I'm supposed to bring him back on Monday for an ACTH recheck. Meanwhile, he still was hesitant about breakfast today, but seems bright and happy.
It seems tricky to catch the right moment, but I'm glad that the vet is acting conservatively. Any advice?
Thanks, Dawn

[tobybarnum]

Just a followup question- I took Toby hiking (his favorite!) for about 5-6 miles 2 days ago. He had a wonderful time, but subsequently the vet advised me that he should be kept quiet during the Lysodren loading phase. Do you all agree?
Thanks, Dawn

[tobybarnum]

Hi there, my anxiety is getting the better of me!! Toby's ACTH test showed still-high cortisol and his CBC was ok so he's back on the loading dose of Lysodren, but he is still VERY reluctant to eat. Given hs reluctance, how am I supposed to know when he's sufficiently loaded?
His behavior is normal otherwise.
Worried in NY, Dawn:confused:

[frijole]

Just a followup question- I took Toby hiking (his favorite!) for about 5-6 miles 2 days ago. He had a wonderful time, but subsequently the vet advised me that he should be kept quiet during the Lysodren loading phase. Do you all agree?
Thanks, Dawn

Lysodren is a chemo drug so it is strong and some dogs get tired when first taking it... their bodies have to adjust. That long of a hike might have been pushing the envelope but all dogs are different. My dog just slept alot and sometimes her tummy growled but otherwise she was fairly normal. I have never heard of having to keep a dog quiet during loading... perhaps the vet was just telling you to slow down the hikes a bit. Kim

[frijole]

Me again. :D Nothing worse than trying to figure out why they won't eat while on lysodren. You said the blood panel was normal and so are poops.... Does Toby's stomach growl like a little upset? Are you wrapping the lysodren in cheese, cream cheese, peanut butter or pill pockets and giving it AFTER the food? This might help if there are any stomach issues.

Also some have given Pepcid AC (not all Pepcids are good for dogs) a few minutes prior to feeding in order to settle the stomach.

It will be tough to monitor food intake if Toby doesn't eat so you might have to figure out what is going on if this keeps up. Meanwhile, does Toby drink gallons of water a day? Are you measuring that? Because that is another thing to track IF water intake is an issue.

Lastly... do poop patrol. You have to go out every single time they do and watch them. If they poop go check it out. I used a stick to check for consistency. You will see it get slowly thinner and I ended up quitting before it got 'runny' and my dog was at 1.8. Obviously this is not a science! So when in doubt you just have to do the acth test.

If you aren't loaded on Monday it could be the dose. But if appetite is still an issue I'd worry more about that and fix that before worrying about whether you are at a 13 or a 5 on the acth test.

Hang in there and keep posting questions. Kim

[tobybarnum]

Thanks for the advice. I've actually been giving the Lysodren before the food, so I'll try after. Haven't noticed any unusual stomach rumblings! He's still drinking and peeing a lot. I live in the city and have to pick up the poo, so have up-close-and-personal views (;-0)
The problem with consistency as an indicator is that Toby also has IBS, so is prone anyway to soft poo. So far no changes in that department.
The problem is that he's reluctant to start eating. Once I get him started
he eats it all, pushes the empty bowl around and wants treats. Still, it's weird, as he usually needs no coaxing to inhale his food as soon as it hits the bowl. I guess the big question is whether the Lysodren is upsetting his tummy or whether he's reached the right level! The ACTH test is accurate, right? I'm worried about overdosing him. :(
Thanks, Dawn

[frijole]

Dawn, Wow you are dealing with IBD and inappetance? I'm not sure I would even try to load since it is just so hard. You said your vet did a blood panel and everything was normal for a cush dog. OK.. I think you should find out what that means just to make sure there isn't something else going on.

Do you have a copy of the last panel or can you get one? I'd like to see anything that was abnormal - high or low. We'd need the reading as well as the range for those items.

How many days have you been loading the 2nd time? Thanks Kim

[tobybarnum]

Good news on Toby! He started eating again, and diarrhea stopped. Been back on Lysodren since Wednesday. Vet wants him back on Monday for another ACTH. Seems as if maybe he just had a bit of a tummy upset for reasons unrelated to Lysodren.
Thanks, Dawn

[tobybarnum]

Update on Toby- we're still loading Lysodren- he had an ACTH sti on Wednesday, and his pre-level was over 7, and post over 9. The vet has increased the dose from 30 mg to 40 per day. He seems to feel fine, and is still drinking about 8 cups of water per day (4-5 would be normal). So just waiting...

[frijole]

Update on Toby- we're still loading Lysodren- he had an ACTH sti on Wednesday, and his pre-level was over 7, and post over 9. The vet has increased the dose from 30 mg to 40 per day. He seems to feel fine, and is still drinking about 8 cups of water per day (4-5 would be normal). So just waiting...

Great to hear from you. I went back and originally you said the dose was 250 mgs a day. I am wondering if there isn't a typo above where you mentioned increasing the dose from 30 to 40 mg per day? Can you clarify?

Hope Toby continues to eat and the poop is firm. :) Kim

[lulusmom]

Kim, Toby started loading at 250mg BID which works out to 30mg/kg. I think the vet is probably upping the dose to 40mg/kg. I readily figured this out because I reread Toby's thread yesterday so I could try to figure out why it was taking him so long to load. Unfortunately, conservative dosing a lot of times drags things out, requires more stim tests and makes it more of a challenge to figure out a maintenance dose that will hold the erosion achieved with loading.

Dawn, can you remind us why your IMS wanted to go with such a conservative dose? Does Toby have tummy problems? Just wondering because it is odd that an IMS would prescribe such a low loading dose. I may have mentioned to you that our IMS loaded my tiny Lulu with 50/kg and our old gp vet loaded Jojo at 50mg/kg also. We did a stim on Lulu on day 7 and we had to continue loading for 3 more days. For being so little, she's a brute. :D Jojo loaded in less than 9 or 10 days but not sure exactly when but on day 10, his post stim was less than 1. :eek: I either blew it big time and missed a sign or he didn't show me one.

I'll be watching for updates.

Glynda

[frijole]

:D Thanks Glynda... I missed that part... but I can answer that Toby has IBD which is probably why the lower dose. Kim

[lulusmom]

Thanks, Kim. I guess I missed that part. The good news is that between the two of us, we have a good memory. NOT!!! :p

[tobybarnum]

Thanks you two, Glad you worked it out!! Sorry for the confusion. The vet did say something about upping it from 30 to 40, and I just assumed it was mgs, until I looked at the bottle!! Actually, Toby was taking 500mg per day, divided into 2 doses, and now is taking 750mg.
I'm puzzled why he isn't loaded yet. He's had 2 stim tests since starting the Lysodren and will have another this weekend- the vet says she doesn't want him on this dose for more than 10 days, and he started on Thursday.
Still ravenous, drinking 8-11 cups of water a day, and peeing a lot.
The good news? He feels fine.... and here I had been panicking that he wouldn't be able to tolerate the medicine!!
Thanks, Dawn (and Toby!)

[lulusmom]

Kim, Toby started loading at 250mg BID which works out to 30mg/kg. I think the vet is probably upping the dose to 40mg/kg. I readily figured this out because I reread Toby's thread yesterday so I could try to figure out why it was taking him so long to load. Unfortunately, conservative dosing a lot of times drags things out, requires more stim tests and makes it more of a challenge to figure out a maintenance dose that will hold the erosion achieved with loading.

Dawn, this should answer your question as to why Toby is not loaded yet. In short, the loading dose is too low which is why your vet is increasing the dose. Too bad he didn't start with 40mg per kg to begin with.

[tobybarnum]

Good news, Toby is finally loaded- had the AHTC test yesterday, results were 2.6 pre and 3.4 after. Going to 1/2 tab (250 mgs) 3X per week.
So all seems good at this point!
Thanks again for all the support and advice, and I'm sure there'll be more to discuss in future!
Dawn

[Squirt's Mom]

Good news, Dawn! :D Those numbers are perfect! What a relief, huh? :)

Do you see a difference in Toby? I was amazed at how much different and better Squirt acted once she was on Lyso and I hope you find the same is true with Toby.

Keep up the good work!
Hugs,
Leslie and the gang

[lulusmom]

Yay!!! Congratulations. You did a great job!

[tobybarnum]

Toby has been on a maintenance dose of Lysodren for over a month now, 250mg 3X week, and 125mg 1Xweek. In the last 2 weeks he has started dribbling urine in his sleep, and had one overnight accident. One of the reasons that we chose Lysodren was that he had high estriadol as well, and Lysodren lowers that. Is it possible that the estriadol is too low now and that's why he has incontinence, or is it just that he is still drinking 7-8 cups of water a day? How long does it typically take for the water consumption to drop?
Thanks, Dawn and Toby

[mytil]

Has an urinary tract infection been ruled out?

Terry

[lulusmom]

Hi Dawn,

Did you have an acth stimulation test done after one month of maintenance? If not, that needs to be done to see if the maintenance dose is effectively maintaining the erosion that was achieved during loading. If a maintenance dose is not high enough, the adrenals will start to regenerate and you will see a return of symptoms.

Not all dogs are the same but water consumption usually improves greatly once the cortisol is within the therapeutic range of 1 - 5 ug/dl. However, some dogs have been unable to concentrate their urine for so long that it takes a while for them to regain the solute necessary for the kidneys to start concentrating the urine again. This is called medullary washout and can take a few weeks to correct. It sounds like Toby's excessive urinating improved but you are now seeing a worsening of this symptoms. Again, an acth stimulation test should be done to rule out high cortisol as the cause.

Glynda

P.S. Because you are treating with Lysodren, I personally don't think estradiol is a causative factor.

[tobybarnum]

Hi everyone, UTI was ruled out. He was re-tested about 2 weeks ago after a month on a weekly Lysodren dose of 750mg, and the cortisol was a little high-6+, so an additional dose of 125mg was added as a 4th dose in the week. Toby's water consumption has never dropped below about 8 cups per day (4-5 would be normal), and he has continued throughout to urinate a lot too. His urine is still dilute. The accidents/nighttime leaking just started about 3 weeks ago. He had no sleeping incontinence before, even before he was diagnosed.
Just wondering why it started now!! He sleeps on my bed, so it's a drag to wake up with a puddle! and it provoked the cat to pee in Toby's bed, which also was unwelcome!I'm hoping that his water consumption will drop and that the problem will self-resolve.
Thanks, Dawn

[SasAndYunah]

Hi Dawn,

I haven't posted to you before but I wanted to chime in about the urine incontinence.

Sleep incontinence is usually associated with incontinence that the dog is not aware of. There are 2 types of incontinence, the kind where the dog is aware of it and the kind where he is not aware of it. The incontinence where the dog is aware of it is usually do to drinking too much, UTI's or some behavioral problems

The kind where the dog is incontinent when he is asleep (not aware) can be caused by for example bladder muscles that aren't working properly (much more so in females though), the urethra and/or bladder are no longer in the right place, a partial obstruction of the urethra or some neurological cause.

So I would definately discuss the incontinence with your vet since it doesn't sound to me that this type of incontinence is caused by drinking a lot.

All our best,

Saskia and Yunah :)

[tobybarnum]

Admin Note: This post copied from an inactive thread thread

HI, My dog Toby has exactly the same issues on the maintenance dose of Lysodren. My vet has checked for UTI, but negative. He is leaking when resting or sleeping, even shortly after a walk. He also seems to have worsening hind end weakness, and I also had expected that to improve with Lysodren. Please keep in touch! My vet is puzzled, but I have a hard time believing that the incontinence is unrelated to Lysodren. Perhaps it is due to a change in hormone levels?
I too am anxious for answers.
Best, Dawn

[tobybarnum]

Does anyone know if Lysodren can cause hearing loss? Could be unrelated, but my dog Toby no longer hears me come in, and seems to not hear when he's called unless I shout loudly.
Thanks, Dawn:confused:

[frijole]

Admin Note: This post copied from an inactive thread thread

HI, My dog Toby has exactly the same issues on the maintenance dose of Lysodren. My vet has checked for UTI, but negative. He is leaking when resting or sleeping, even shortly after a walk. He also seems to have worsening hind end weakness, and I also had expected that to improve with Lysodren. Please keep in touch! My vet is puzzled, but I have a hard time believing that the incontinence is unrelated to Lysodren. Perhaps it is due to a change in hormone levels?
I too am anxious for answers.
Best, Dawn

Dawn, I didn't see where you answered Glynda's question regarding a followup acth 30 days after loading... Have you done a followup test? It could be that the dose wasn't enough to maintain. You are right - you should have seen a difference in that water consumption and the leg shaking goes away after a few months. (my experience) When was the last acth and what were the numbers? Thanks!

Regarding hearing loss... my dog Haley had the same thing happen and I researched it a bit. Dogs often lose lose hearing quickly. Mine did and I noticed it the same way you did. Just to be safe - you haven't given any ear drops lately have you? The good news is that even with little hearing and eventually little eyesight... my girl lived a happy life up to the ripe age of 16 1/2! Hang in there. Kim

[tobybarnum]

Kim, Thanks for the reply. I am worried about Toby now. It's so complicated to figure out what is from Cushings or the Lysodren, what is from arthritis and IBS, and simply aging. I don't have the numbers in front of me, but his last ACTH test was May 27, and the numbers were well below 5. Previously his cortisol was still a bit high, so we increased his Lysodren to 875mg. per week, divided into 4 doses. He's still on that dose.
He is still drinking about 8 cups of water a day (he's 40 lbs). He is having fairly regular incontinence while sleeping and resting, not necessarily just when his bladder is full. The vet has suggested that "if it's bothering you", to start him on Proin, but I am reluctant to add a med without a real diagnosis of why it's happening. Perhaps it is just aging, but the timing of this starting after the maintenance dose of Lysodren seems coincidental to me. He does not have a UTI or diabetes.
His hind end seems to me as if it's getting weaker and weaker. Now he won't even try to jump up into the car, and he is reluctant to walk. Before all this started a few months ago, we always walked a few miles each morning, and now I'm lucky if I can get him to walk more than 6 city blocks. I know he does have some arthritis, so perhaps that's worsening as the cortisol levels drop, but I had hoped that the weakness would improve, not get worse.
And to top all this off, I think he's losing some hearing!!
My friends continually remind me that he's simply getting older, and that I need to drop my expectations, but he's deteriorated quite a bit in the last 4-5 months since we started the Lysodren, so I have to wonder if some of it is side effects. I'm even considering switching to Trilostane to see if he does better with that.
Going to another vet on Thursday to get another opinion on all this.
Any opinions welcome!
Thanks, Dawn

[Harley PoMMom]

He is having fairly regular incontinence while sleeping and resting, not necessarily just when his bladder is full. The vet has suggested that "if it's bothering you", to start him on Proin, but I am reluctant to add a med without a real diagnosis of why it's happening. Perhaps it is just aging, but the timing of this starting after the maintenance dose of Lysodren seems coincidental to me. He does not have a UTI or diabetes.
Dawn

This may be a long shot here, but this is what I am thinking: Lysodren does lower the level of the intermediate sex hormones, one of them being androstenedione. Androstenedione does metabolize over to testosterone and low testosterone can lead to incontinence.

Love and hugs,
Lori

[tobybarnum]

Dear Lori, I had thought of that- would redoing the Tennessee panel show that?
Thanks, Dawn

[Harley PoMMom]

The lab at the University of Tennessee, which also does the adrenal panel, can just test the testosterone levels. Here is a link about that: http://www.vet.utk.edu/diagnostic/endocrinology/index.php

You may also want to ask your vet if the lab that they deal with will do a testosterone stimulation blood test.

[tobybarnum]

Hi all, I have an update on Toby. I went for a second opinion about the incontinence and the hind end weakness. Evidently even if the incontinence is due to low testosterone they would not consider it safe to supplement it, so we are trying some bladder strength supplements, and if that doesn't work will try Proin. He had x-rays after he nearly bit the doctor (VERY uncharacteristic!) when he tried to manipulate the hips. Turns out he has very severe arthritis in both hips! I guess it was being masked by the high cortisol levels, and now that his cortisol is lower his symptoms have worsened. Back on Rimadyl and a host of joint supplements, including Dasuquin. He seems better today even after just 2 doses of Rimadyl. I hate to use it given all the side effects, but will have to bite the bullet for a little while to give him some relief.
Thanks again,
Dawn and Toby
:o

[StarDeb55]

Dawn, rimadyl & other NSAID type meds are not the ideal choice for our cushpups. They can cause other problems such as GI tract bleeding. I know a lot of members have used metacam for pain control when arthritis is an issue.

Debbie

[tobybarnum]

My dog Toby has been on Lysodren now for about 6 months. His dose has been increased to 1000mg per week. He is still symptomatic, and his last ACTH test was 4 before, and 11.7 after. My vet is reluctant to increase his dose any more, and is talking about trying Trilostane instead. She feels that to increase the dose of Lysodren more could be dangerous. Does anyone have experience with Lysodren not working? Thanks, Dawn:confused:

Moderator's Note: Dawn, I have merged your update on Toby into his original thread. We, normally, like to keep all post on one pup in a single thread as it makes it easier for other members to refer back to the pup's history, if needed.

[Squirt's Mom]

Hi Dawn,

When you say he is still symptomatic, what signs are you seeing?

How is Toby getting the Lyso? ie, after his meal, with a particular food, etc.? Do you give it with any other meds, supplements, herbs, etc.?

Has he had any IBD flare ups that might have interfered with absorption of the Lyso?

How long after his last dose was the ACTH done?

Sorry for all the questions but if we can get a good picture, maybe we can help figure this out. ;) There are pups who for whatever reason cannot take one drug or the other, or who find one works better than the other. But before you put Toby through a wash-out, a minimum of 30 days, let's see if we can't find an answer somewhere else. So bear with us and we will work with you through this.

Hugs,
Leslie and the gang

[lulusmom]

Hi Dawn,

I don't think Toby's last stim results were high because Lysodren isn't working. It has a high efficacy rate but it is not always easy to find a maintenance dose that will maintain the erosion of the adrenal cortex achieved by loading. It is not uncommon for dogs to relapse in the first year of treatment, which is usually remedied with an increase in dose or reload, depending on the post stim number.

Toby's current maintenance dose is 1,000 mg which is the equivalent of 55mg/kg. That is not terribly high. For a frame of reference, my cushdogs weigh 4.5 and 6.5 lbs respectively. Their original maintenance dose was not high enough to retain erosion so we increased the maintenance dose twice. They are now on a maintenance dose of 60mg three times a week. That equates to a weekly dose of 88kg/mg and 61mg/kg respectively.

Your IMS knows Toby's history and if s/he feels uncomfortable with increasing the maintenance dose or reloading due to possible complications with Toby's IBD, then Trilostane would be the obvious choice. If this is what you and your vet ultimately decide, it is recommended that you go through a washout period of no Lysodren for at least 30 days. Some experts recommend longer and others recommend less if the dog is symptomatic and a post stimulated number is well above the normal basal reference range.

Both of my dogs are symptomatic again so I'm facing the same dilemma. I'm not sure I'll choose to reload them or switch them back to Trilostane. I'll figure that out when I scrape up the money for two stim tests. Oy!

Glynda

[frijole]

Dawn, My dog Haley took forever to load. We slowly increased her dosage. She didn't load until we got to 110 mgs/kg which is TWICE where you are now. She only weighed 18 lbs. My point is some dogs just require more. There was a quote from Feldman (renowned specialist) that came right and said - if they aren't loading you can increase the dose to these levels. So you aren't alone and 55 mgs is quite frankly the 'norm' so you may be closer than you think.

You could certainly switch to trilo but you must wait for a period of time. How many times have you increased the doses so far? I'm surprised you've been doing this for 6 mos and are still only at 55 mg/kg. My two cents. Hang in there!!! Kim

[tobybarnum]

Thanks, everyone. I am inclined to increase the dose before giving up, because he's been doing well on the Lysodren up 'til now. It's an interesting idea that his IBS could be interfering with the absorption.
My vet happens to be headed this weekend to an endocrinology conference and she was going to bring up Toby's case to Dr. Peterson and other endocrine specialists. She's very smart but young and doesn't have extensive experience with Cushings. I may also get another opinion from an IM specialist. Perhaps a reload is also a good idea. We also see an integrative medicine vet for acupuncture and supplements, and I will ask him for his opinion as well.
To answer a few of your questions, Toby has begun being ravenous again, drinking lots of water, needing to pee a lot etc. He's on a bunch of supplements, most for his severe arthritis and his bladder issues (which have cleared up): Dasuquin, Omega 3s, Bladder Strength Formula, KE Hip and Knee Formula (chinese herbs), Senior multi-vitamin. I put those and the Lyso directly in his bowl with his kibble and he scarfs it right up.
I have noticed that he doesn't always digest everything thoroughly- I see bits of pills in his poo, so maybe the Lyso is not totally absorbed.
Thanks, Dawn:)

[Harley PoMMom]

Lysodren has to be given with an adequate amount of fat to be absorbed properly. I believe some members hide the Lysodren in a small amount of cream cheese or peanut butter before the main meal is given.

[tobybarnum]

Just a quick update- Toby had a consultation with a veterinary endocrinologist here in NYC ($$$!!!!!), and we made a decision to reload the Lysodren. On day 3 of the reload now.
He said, as many of you did at the time, that Toby's initial maintenance dose was too low. His words was "Your vet is chicken!". Having second thoughts about my vet now. Although she's very smart and attentive, I think she may be too inexperienced. Hopefully she learned something for the next Cushpup!!:D
Dawn

[addy]

Good luck with the reload, Dawn. I am glad you were able to speak with a specialist.

Let us know what happens.

Hugs,
Addy

[Squirt's Mom]

Good plan! :D Keep in touch and let us know how things are going!

Hugs,
Leslie and the gang

[tobybarnum]

Well, Seems that nothing is ever simple. Toby reloaded (500mg per day) for a week. Stim test was still too high, so another week. This time the levels were on the high side of normal, and the endocrinologist recommended another 5-7 days of loading, even though Toby had lost his appetite, had a flare-up of his IBD and arthritis and was somewhat lethargic. We made it through another 3 days before I called it quits because he was feeling so lousy. His numbers are perfect now, but I have a dog who won't eat, can hardly hold his rear end up, and has huge piles of greasy poo. Starting tomorrow he goes back on a maintenance dose of 1000 mg per week. I have been discouraged and am starting to wonder if the treatment is worse than the disease.
The vet has said that it may be best to not try to completely control the Cushings, but find a level with either extreme. There's also the option of seeing if he does better on Trilostane, but I suspect that the higher cortisol levels have been treating his IBD and arthritis and that he will feel lousy with low cortisol levels period.
Is it always better to treat? What is the prognosis/progression of Cushings if left untreated?
Thanks, Dawn:(

[tobybarnum]

Sorry- typo= find a level with neither extreme, not either extreme.
Oops, D

[Squirt's Mom]

Hi Dawn,

What were the results of the ACTH after the load? With the signs you mentioned, I'm not sure I would start maintenance without an ACTH telling me exactly where he is right now as those are signs of the cortisol being too low. In fact, I know I wouldn't.

Here is a link of what to expect with an untreated cush pup from our Helpful Resource section -

http://www.k9cushings.com/forum/showthread.php?t=195

Sometimes we have to do a balancing act with treatment when there are other issues in play. Some pups do better with their cortisol running a bit higher than recommended but this is very individual and something to confer with your vet about - after finding out what Toby's level is now. ;)

I am sure others will be along soon!
Hang in there!
Hugs,
Leslie and the gang

[StarDeb55]

Dawn, the best rule of thumb I can tell you which is what my vet told me is that you have to "treat the pup, not the numbers", at times. My Harley who was 13 1/2 at diagnosis, never went lower than a 5.5 on his post on his stims. Both my vet & I thought he felt better, clinically looked better when he was running from 5-7. Once he started creeping over 7 than his symptoms would start reappearing.

Debbie

[tobybarnum]

Thank you everyone, his ACTH numbers yesterday were 2.7 before and 3.4 after. The endocrinologist wanted them to be on the low side of normal to prevent another relapse. I am happy to hear that you and others have been successful in sustaining levels which suppress the Cushings symptoms but aren't so low that it causes other problems. I'm particularly encouraged by Debbie's experience- something like that is probably what we may need to shoot for to keep the Cushings at bay but still have a happy dog. When your dog starts to creep up over 7 and show symptoms do you reload for a few days, or? The vet suggested restarting the maintenance dose on Saturday, giving him another Lysodren-free day. His last dose (250mg) was on Tuesday morning.
Thanks, Dawn

[StarDeb55]

Dawn, since I had been through this once already, my vet gave me a little latitude. If I started seeing Harley's symptoms reappear, I would put a call into him, let him know, remind him of the current dose, & make suggestions of a new maintenance dose. Most of the time, he would agree to what I suggested as an increase in the maintenance dose. Routine protocol states that anytime you make a change in the maintenance dosing, you need to recheck a stim in 30 days to make sure the new dose is working. I told the vet that if I didn't see Harley's symptoms subside, I would bring him in for the stim. If his symptoms went away, his next stim would be in 3 months. Harley never went 6 months without a stim. My vet was very cautious with him because of his age, & wanted his stims done every 3 months, 4 at the most.

Debbie

[Jenny & Judi in MN]

Hi: Do you think Toby is absorbing the pills now and are you going to continue the same maintenance dose you used last time when his levels went up or increase it a bit?

We've struggled finding the right Lysodren dosage for Jenny too. In fact we were about 5 minutes away from switching when she started feeling great.

I'm pulling for you and Toby. It is such a roller coaster. Judi

[tobybarnum]

Awake at 2AM to another downside to low cortisol? WE are having a thunderstorm here, and Toby, who has never been afraid of thunder, is so terrified that he peed in his bed and then overturned it in his agitation and is now cowering and shaking. Not sure I like this new development either! Ordering a thundershirt.
Dawn:eek:

[frijole]

Dawn - While Toby is feeling cruddy - a reading of 3.8 is not low cortisol. It is considered normal for a dog with cushing's. I point this out so that any newbies reading here aren't confused. Deb's point was he might feel better if slightly higher -

Cush dogs tend to be easily agitated and particularly at night. My dog used to pace the bed sometimes. So the lightening and the urination are signs of cushings not low cortisol. You come to live with them over time. Hang in there! Kim

[tobybarnum]

Just checking in. Toby is feeling a bit perkier since discontinuing the loading and resuming the maintenance dose (250mg 4 times a week), but still is very reluctant to eat and having very large soft poos. He's been started on Tylan and probiotics, but neither seems to be having any effect so far. Metronizadole didn't help either. He's lost a little weight. Not sure what to try next!
Thanks, Dawn:(

[addy]

Hi Dawn,

A word about probiotics, if one does not work after 2 weeks, you might want to try a different one. With Zoe, her holistic vet had her on a human probiotic, Culturelle that I had to break open and put in her food. Sometimes it helped, sometimes not, it was not consistant. I switched to a doggie brand that she can just swallow the whole capsul and I give it mid morning with a tiny snack and it did help her. So it may be one strain may not work but another strain may. Also, you cannot give it with the metronidazole. You need to wait a few hours in between metronidazole and the probiotic, the longer you can wait, the better.

Just my experience the last few years with the two. You would also want to wait between administering the tylan and the probiotic.



Hugs,
Addy

[tobybarnum]

Thanks for the tip, Addie. Will do.
I know that Toby's numbers are not low- I should have been more exact and said "lower cortisol". It's low for him, and he clearly felt better when his cortisol was higher.
He's improved slightly since my last post, but still needs some coaxing to eat, and still has some messy poops! He's livelier though.
I've had him in twice for acupuncture, and his arthritis is still clearly painful.
Doing nothing more for now, just waiting to see if he continues to improve now that he's back on the maintenance dose of the Lysodren.
Thanks everyone, Dawn

[tobybarnum]

Hello everyone! I haven't been here since we got Toby stabilized on Lysodren in October. Recently we've had some new and complicated problems, and I could use some advice.
Toby had what the vets think was a mild stroke on Tuesday night. He startled up from a laying position and got up and tried to walk towards me. He was staggering like a drunken sailor. His front legs seemed to work ok, but when he tried to move forward he was going more sideways back and forth, and his back legs were not supporting him. No head tilt, no nystagmus, no "paddling". He was obviously distressed and panting hard. I threw on my shoes and called the garage for my car ready to take him to the hospital, but by the time I did that he was already normalizing. The whole episode lasted maybe 3 minutes.
Since then he has seemed fine.
We went for a workup at the vet, and they ran a battery of tests. His blood pressure and CBC and chest x-ray were all normal, but his kidney values are off. Total protein is 8.9 (normal 5-7.4); GLobulin 5.7 (norm is 1.6-3.6), Albumin/globulin ratio 0.6 (0.8-2.0);Alk Phosphatase 640 (5- 131);Urea Nitrogen 40 (6-31); Creatinine 1.8 (0.5-1.6). Everything else was normal.
Based on this, they ran a tick panel, and he shows antibodies for Anaplasmosis. Evidently this is hard to diagnose though, and doesn't mean he actually has an active infection. He hasn't had any acute illness consistent with it, but it can cause some of the symptoms that he's had. The vet is recommending not to treat for it now.
They're also testing for Leptospirosis (common where i live), but I doubt that he has it.
I'm not sure what my question is here, but has anyone else had stroke or kidney issues with Cushings/ Lysodren? I'm feeling a bit overwhelmed at the complexity of all this.:(
Of course Toby isn't worried at all- he seems to be doing just fine!
Thanks, Dawn

[lulusmom]

Hi Dawn and welcome back.

I know we have members who have dealt with more common, and equally scarey, things like vestibular issues and seizures but with stroke being such a rare thing in dogs, I'm not sure we have any members who've gotten a definitive stroke diagnosis. I know it's easier said than done, but try not to worry too much until the results of all the tests are in. According to what I've read, I think your vet is going down the right path to rule out possible causes.

Has Toby ever had elevated kidney values on prior bloodwork?

[tobybarnum]

Hi, To answer your question, Toby has never had elevated kidney values before. The stroke diagnosis is, unfortunately, not confirmed, but rather based on symptoms ( or lack thereof!), and atypical seizure or vestibular incident is not ruled out. The only was to confirm stroke is CT scan and/or MRI, and it doesn't seem worth it for one brief incident. The fear of course is that he may have another. His blood and urine work has been sent to Dr. Peterson ( the endocrinologist) for his opinion. Meanwhile, since nothing is ever simple, Toby is becoming symptomatic again ( a mere 2 months after the latest dose adjustment), and is getting stimmed today. I'll be back when the results are in!
The good news? He feels fine, and is happy!
Dawn

[tobybarnum]

Oh, forgot to mention that we are also going to repeat the kidney and anaplasma tests in 2 weeks to see if there is any change. It's still unlikely that he actually has anaplasma, but unfortunately there's no good test to confirm one way or the other. For all we know, he could have been exposed 7 or 8 years ago, since the test just measures antibodies. Hate to put him on antibiotics for nothing!
Meanwhile, the vet has given me a supplement for kidney function-
Rehmannia.
Best, Dawn

[tobybarnum]

Hi, to add more complications to an already complicated situation, Toby had a stim test and since the last Lysodren reloading and increase to 1000mg per week maintenance dose his cortisol has jumped from 4.8 before and 10.5 after! Not sure where we go from here, but looks as if his Cushings has gone out of control again.
Very discouraging!
Thanks, Dawn:(

[lulusmom]

Hi Dawn,

I'm sorry that Toby's cortisol is out of control again. It seems like you take one step forward and two steps back. It has been a real chore trying to get Toby stabilized. Oy! Now would be a good time to talk to Dr. Peterson and ask him to share his recommendations on how to proceed.

Glynda

[tobybarnum]

Hi, We have an appointment to see Dr. Peterson ( endocrinologist) on the 26th. He would have charged $250 just to talk to my gp vet on the phone! He did send a message by way of his secretary that Toby will need to be reloaded on Lysodren again, and that the kidney function problems were unrelated. How he reached this conclusion I have no idea.
I am not happy with the prospect of another reload since we just went through this in October and Toby didn't do well during the loading phase, but my vet says that if it were his dog he would follow Dr. Peterson's recommendations.
I'm feeling very frustrated and worried for Toby. I just hope that the specialist isn't more concerned with getting the numbers perfect than he is about Toby's quality of life. Right now Toby feels good, but since his kidneys are off and he had a stroke or seizure last week I'm not too happy about embarking on a new Lysodren reload right now.
I sure wish there was more than one Cushings specialist to consult with. Does anyone know if there is someone at U Tenn since Dr. Oliver died?
Thanks, Dawn:(

[lulusmom]

Hi Dawn,

Please see my comments below in blue.


Hi, We have an appointment to see Dr. Peterson ( endocrinologist) on the 26th. He would have charged $250 just to talk to my gp vet on the phone! He did send a message by way of his secretary that Toby will need to be reloaded on Lysodren again, and that the kidney function problems were unrelated. How he reached this conclusion I have no idea.

Probably because while cortisol increases the blood flow within the kidneys, it doesn't usually cause kidney dysfunction.

I am not happy with the prospect of another reload since we just went through this in October and Toby didn't do well during the loading phase, but my vet says that if it were his dog he would follow Dr. Peterson's recommendations.

I would agree with your vet. Some dogs are tough to keep regulated and I think Toby is one of those dogs. You basically have two choices, reload with Lysodren, or switch to Trilostane. I'll be interested to know if Dr. Peterson discusses the options with you.

I'm feeling very frustrated and worried for Toby. I just hope that the specialist isn't more concerned with getting the numbers perfect than he is about Toby's quality of life. Right now Toby feels good, but since his kidneys are off and he had a stroke or seizure last week I'm not too happy about embarking on a new Lysodren reload right now.

I've listened to a lot of Dr. Peterson's audios on the subject of cushing's and it's treatment and I never got the feeling that he is a go by the numbers kinda guy.

I sure wish there was more than one Cushings specialist to consult with. Does anyone know if there is someone at U Tenn since Dr. Oliver died?

Dr. Oliver was not an internal medicine specialist. He was a brilliant scientist. I would give anything to be able to sit down and talk to Dr. Peterson about my cushdogs. I really believe you have one of the best specialists in the nation.
Thanks, Dawn:(

[tobybarnum]

Thanks for the reassurance. It really does help. I'll post after the appointment and let you know how it goes.:)

[tobybarnum]

Hello everyone, we had a great session with Dr. Peterson, endocrinologist, yesterday. He spent an hour with us!
He immediately said that we should not reload the Lysodren for a third time, since it seems that Toby does not tolerate it well, and it has not been controlling his Cushings. Instead, we are going to try Trilostane, beginning today. He says that since Trilostane works by converting cortisol into a less toxic form of cortisone it should also be better for Toby's worsening arthritis. We are to start with 30 mgs once a day for 2 weeks, and then if Toby has no adverse effects and his resting cortisol is ok we will increase to 2x a day witha stim at 4 weeks.
As for the kidney issues, he said that Lysodren does not have an impact on kidneys since it is metabolized in the liver, and that the Cushings itself would not cause the values we are seeing. He says that the most common reason for elevated kidney values in Cushings dogs is hidden kidney infection, not obvious on uRinalysis, and that he wold treat preemptively with antibiotics and see if the kidneys improve.
His biggest concern was actually the stroke/seizure/vestibular event two weeks ago. He said that dogs with macro pituitary tumors are prone to very atypical seizures which can manifest as even just "acting weird", and also the tumors can sometimes bleed, causing stroke. He recommended a CT scan or MRI if it happens again. If it was a large tumor, he would probably discontinue treatment. He said that the only people doing surgery on these tumors that he would trust are in Holland, and that radiation entails 3X a week treatment for smith, each treatment requiring anesthesia, so he doesn't recommend it. There's evidently a vet in Yonkers, NY who is experimenting with a single dose radiation treatment, but it's not as effective.
I asked about melatonins, flax/lignans and diet. He is not much of an alternative medicine guy and feels that the supplements don't really work in dogs with full-blown Cushings. I may try anyway, since he says he doesn't do any harm. He also said that since Toby doesn't have muscle wasting he doesn't need a high protein diet, and that he doesn't believe that low protein diets for kidneys are proven to help.
I'll keep you updated as we go!
Happy holidays to everyone, Dawn and Toby:)

[lulusmom]

Hi Dawn,

Thanks for the update. You are so lucky to have been able to sit with Dr. Peterson for a "whole" hour. That's great!!! I'm not surprised by Dr. P's recommendations and I truly hope that Toby can finally be stabilized on Trilostane. My two cushdogs were on it a few years ago and they did very well on it. In hindsight, I'm not sure I would have switched them back to Lysodren.

I look forward to reading your updates so keep them coming.

Glynda

[tobybarnum]

How do I change the heading on my posts? Toby's no longer being treated with Lysodren, so it doesn't fit any more...
Thanks, Dawn

[labblab]

Hi Dawn, I can make the title change for you :) (unfortunately, only staff members have the ability to edit thread titles). I will temporarily change Toby's title to: "From Lysodren to Trilostane." But if you want it to read any differently, just let us know and one of us staffers will make it happen.

By the way, good luck with the trilostane!!!!!!

Marianne

[tobybarnum]

Quick update- Toby started to vomit yesterday morning after only 3rd dose of Trilo. Luckily he had just had blood drawn to retest kidney and anaplasma values, so added on resting cortisol level to see if Trilo was causing the vomiting. Will post again when results are in.
Toby seems fine now.
Nothing is simple!
Dawn

[addy]

Hi Dawn,

I hope Toby is better. Did you give him his Trilo today or did you withhold the dose?

Let us know your test results.

hugs,
addy

[tobybarnum]

Hello everyone, Toby's resting cortisol was 3.1 so I gave him the Vetoryl yesterday after the test result came in. since he's only getting it once a day for now, he didn't even miss a dose! No vomiting after the dose, so whatever caused the vomiting it wasn't the Trilostane. That's a big relief, since we have limited options now!
I'm still wondering about the Adequan injection, even though the vet insists that vomiting is not a side effect of that.
Anyway, Toby is fine now, so we continue. It was just very scary to get a call from the dogwalker to come home immediately because he was really sick , especially as we had just begun the Vetoryl!
So far the CBC and kidney test reports are back, still waiting on the tick profile and urine culture. With the holiday weekend, I doubt I'll see those before Tuesday. The kidney values are almost identical to 2 weeks ago except that this time his potassium was marginally elevated. He's started on Simplicef for a potential kidney infection, as per Dr. Peterson's recommendation. His alk phosphatase was up from the 600s to the 900s, but since his Cushings isn't controlled yet I'm not worried about that.
Happy New Year, everyone, and thanks for your support!
Dawn and Toby

[Squirt's Mom]

Glad to hear it wasn't a case of his cortisol dropping too low! I know you are relieved, too. :)

Hope you have a safe and happy New Year's Eve!

Hugs,
Leslie and the gang

[tobybarnum]

It seems like one thing after another here! Now Toby has developed a fairly large very angry red area in his groin, with several small black raised circular areas surrounded by white interspersed. It doesn't seem to be bothering him, but it looks terrible. Any idea what it could be? Do I need to take him to the vet for the 3rd time this week?
Thanks, Dawn:confused::eek:

[Squirt's Mom]

Hi Dawn,

I have no idea what that could be. Sounds awful! :eek: If it popped up suddenly, I would probably have it checked out - ok, even if it came up slowly over a period of time, I would have it checked out. ;)

Does it seem to be bothering him this morning? Any licking of the area?

Hope it's nothing to worry about.

Hugs,
Leslie and the gang

PS. He didn't sneak out on New Year's Eve, party down, and end up in a brawl, did he? :p

[addy]

Could it be some kind of bite or sting? Is he licking it? Scratching at it? Is he acting strange in any way?

Does he tremble anywhere on his body if you touch it?

Well, look at it this way, if things happen in threes, maybe this will be the last vet trip for awhile:o:o:o:confused::confused:

Always something!!!!!:eek::eek:

love,
addy

[tobybarnum]

Hi everyone, it turned out to be a bruise. The vet was concerned, but it healed over a few days and disappeared, so the theory is that somehow he hurt himself , perhaps jumping or falling.
He's been on a half dose of Vetoryl for 2 weeks now. His resting cortisol was checked on Monday and is 3.1. He's still very symptomatic though, so I'm waiting to hear from Dr. Peterson about increasing the dose. In another 2 weeks he gets the full stim.
Thanks, Dawn

[tobybarnum]

Just a quick update: even though Toby is quite symptomatic , Dr. Peterson wants to do another 2 weeks on 30mgs a day before increasing. After a bit of probing it turned out that he is going to be away and doesn't want any changes while he's gone! I'm slightly impatient, especially since we've had several walks in the wee hours lately, but there's probably no harm in going slow. At least this way I can focus on healing my own ruptured disc and my poor kitty's partially collapsed lung! It's been a stress-filled time in the Hannay household!:eek:

[Squirt's Mom]

Hi Dawn,

Glad it was nothing worse than a bruise and hope Toby is healing well.

Sounds to me as if your household has had it's share of troubles lately so it's time for a break. Please take extra good care of yourself during all this and know we are here if you ever need to blow off steam.

I hope your kitty improves! That sounds awful! Poor baby...:(

Hugs,
Leslie and the gang

[tobybarnum]

Thanks, Leslie. I finally broke down last night! It's a rough patch here. The kitty's collapsed lung is either pneumonia or a tumor. Obviously the former is better, but since he doesn't seem sick I'm afraid it may be the latter. Anyway, 2 weeks of antibiotic followed by more testing.
I know this is off-topic- sorry, but it's very worrisome.
Luckily Toby, although symptomatic for his Cushings, is stable for the moment, and I hope it stays that way for the next few weeks. Can't handle much more stress right now!;)
Dawn

[Squirt's Mom]

Mornin' Dawn,

Concerns and worries about your babies, any kind, are never off topic here. You and yours are family. ;) If you'd like, start a thread for your kitty in the Everything Else section. You never know - someone here may have had something similar they have gone through...or be able to direct you someplace where you can get more info. It wouldn't be the first kitty thread we've had. ;):)

Breaking down is good from time to time. We all need that release, especially when our hearts and souls are under such strain. Dealing with illnesses in those we love is such a heavy load. Please take time for yourself, just for you, to do something that makes you happy, that "takes you away from it all" for just a little bit. You deserve these times. You're a great mom and I know your babies love you so very much.

Keep your chin up and remember, we are always here for you.
Hugs,
Leslie and the gang

[tobybarnum]

Hi, It's been a while since I have had to post here! After switching Toby from Lysodren to Trilostane this fall his Cushings has been well controlled. His last set of blood work, in April, was perfect both for cortisol control and kidney and liver function. His arthritis has worsened however, and his back legs have a very stiff sort of hopping gait. My vet and I have been working on that. He has started Adequan, and has had 5 injections so far. I'm also taking him for hydrotherapy, acupuncture and giving the occasional Rimadyl as needed. It seemed he was improving until a few days ago. He developed a Corneal ulcer, superficial, and is getting treatment for that. Soon after his appetite waned, and his walking pace slowed considerably again. Yesterday I took him to his favorite beach for a wade. While in the water he started tilting his head to one side and shaking it. I assumed water in the ear, but then his entire rear end collapsed, and he began dragging himself out of the water with only his front legs. I ran to help him as did a passerby, and we got him on his feet. After a moment or 2 he could walk, though with a staggering very unsteady cross legged gait. He had to step down about 3 inches on the way back and his back end collapsed again. This time he regained stability and was able to walk to the car. His gait seems stiff but normal now. He went straight to sleep at home and slept very heavily all night. Any suggestion? I'm worried about a larger tumor pressing on the brain, or? He did not seem in pain at all.
I'm very worried!!
Thanks for your help! Dawn:confused:

[Squirt's Mom]

Hi Dawn,

It could have been a vestibular event - which is apparently quite frightening to see.

Here are some links on it -

http://www.vara.org/VestibularSyndrome.htm

http://www.petside.com/condition/dog/vestibular-disease-canine

http://www.petplace.com/dogs/vestibular-disease-in-dogs/page1.aspx

Let us know how he is doing!

Hugs,
Leslie and the gang

[tobybarnum]

Hi, I haven't been here in a while since Toby's Cushings has been perfectly controlled on Trilostane. We have a new series of troubles, however. Toby has been diagnosed with tick disease(s); anaplasmosis for sure, and now probable Bartonella. He's on Doxycycline and Azithromycin. Furthermore, he's having an MRI on Monday to look for a probable disc problem. If he does have a slipped disc, I am extremely reluctant to subject him to surgery, since he is 12-14 years old and has Cushing, 2 tick diseases and arthritis. My vet mentioned possible therapy with prednisone even though he has Cushings. Has anyone been forced to administer Prednisone to a Cushings dog? Is it a matter then of juggling priorities and ceasing to treat Cushings in favor of managing the disc disease?
As Bette Davis famously was quoted, " old age ain't for sissies".
Dawn

Moderator's Note: I have merged your update on Toby into Toby's original thread. We, normally, like to keep all posts on a pup in a single thread as it makes it easier for other members to refer back to the pup's history, if needed.

[tobybarnum]

It's with a heavy heart that I have to tell you all that Toby passed away early on Tuesday morning. He had an MRI on Monday, which showed no evidence of disc disease or tumors.
The vets were stumped. My general vet, who is very smart, simply said she had no idea where to turn next. The specialists at the hospital were turning to ever more rare hypotheses, and unfortunately even if we had gotten a diagnosis it was likely to be something that we wouldn't have been able to successfully treat.
While he was under anesthesia they performed a spinal tap,and sent blood work out to test ANA levels to look for Systemic Lupus and for Myasthenia Gravis and were also discussing Multiple Myeloma.
Unfortunately we ran out of time: that night Toby crashed, with shaking, vomiting, diarrhea, fever,whining and generalized weakness. I could not let him suffer, so in the wee hours 2 friends and I took him to the hospital and let him go.
He feel asleep with his head on my lap before they even came with the drugs and passed peacefully.
I am inconsolable, but I know I did the right thing for Toby. It's just so frustrating to not know what caused this to happen. He was a very special dog, and touched many with his cheerful, loving disposition. he could bring a smile from even the most grumpy New Yorker.
Dawn:(

[Squirt's Mom]

Dear Dawn,

Tears are flowing. You and Toby worked so hard together; I am so sorry they couldn't find what was wrong and offer a viable solution in time. My heart breaks for you.

I firmly believe you will see your sweet boy again. And until then, he is going to be watching over you with all the love he has in that massive soul of his. It is my hope that one day soon you will see something that you know has come from Toby, a sign from him to you that he is ok.

Please know we are here for you anytime. Feel free to talk to us about anything. We do understand the anguish you are feeling.

Our deepest sympathies,
Leslie, Squirt, Trinket, Brick, Tasha, and our Angel, Ruby and Crystal

http://www.k9cushings.com/forum/showthread.php?t=3918

[k9diabetes]

I am so very sorry to hear of Toby's passing. It is especially difficult when something comes on quickly and remains a mystery... When our dog passed away a few years ago, we were "fortunate" that we stumbled on the diagnosis just two weeks before he died (cancer). Otherwise, we would have been in shock and so confused when he suddenly got very weak and started having bleeding into his GI tract. As much as I hated the diagnosis, it allowed us to be somewhat prepared for what was to come.

Toby will be missed as much as he was loved, which was obviously very very much. Bless you for giving a good dog a good life.

Natalie

[jmac]

I am so sorry to hear of Toby's passing, and even though it is so horrendously difficult for us, we know what we have to do when they are suffering.

Obviously you have a very special connection and you knew exactly when it was the right time. I am so glad you were there with him and he was in your arms knowing how much you loved him, when he peacefully went to the Rainbow Bridge.

I hope your happy memories will bring you some peace.

Julie & Hannah

[addy]

Oh Dawn, I am so sorry to hear about Toby.

The pain is so terrible because the joy was so great.

Love and hugs and depest symptathy.

[mytil]

Dearest Dawn,

I am so very sorry to read about your little Toby passing. My heart is with you.

(((hugs)))
Terry

[lulusmom]

Dawn, I am so very sorry to hear about Toby's passing. You are both in my thoughts and prayers.

Godspeed, sweet Toby.

[frijole]

Dawn, I went and reread your entire story from the very beginning and sometime when you are up to it you should too. Without a single doubt you did every thing possible for dear Toby. Your love for him is just so obvious in every single post. The little guy had so much going on and losing him so suddenly had to have been very painful. Know we will honor his memory here always. Sending love and healing thoughts to you and yours, Kim RIP angel Toby - run free of pain.

[GabbySue]

Dawn I am sorry to hear of Toby's passing. I had started reading his thread the other night and it was without a doubt incredible the devotion you had for Toby and all that you both went through to get him well. Rest in Peace Toby!

[Sabre's Mum]

Dawn

I am sorry to hear of Toby's passing. My thoughts are with you. Rest in peace dear Toby.

Hugs from me to you
Angela and Flynn

[molly muffin]

oh dear, I'm sorry that Toby is gone. I'm glad he went peacefully though. I can't imagine how scary the whole episode has been.
Take care,

Sharlene