Boston Terrier in Phoenix

[Arizona Boston]

Long time lurker, first time poster. Thank you to all the people who take the time to help others.

My Boston Terrier Lucy is 10 1/2 and was diagnosed with Cushing's last November when her pre dental lab work showed elevated liver enzymes, and she also had a UTI. Her ACTH on Nov 3, 2012 was Cortisol Pre 9.0 ug/dL and Cortisol Post 30.0 ug/dL. At that time the most noticeable symptoms were increased hunger and thinning hair, but when we researched the disease, we realized she also had increased water consumption, panting and and pot belly that we had just attributed to aging. She also has a few skin lumps we now know are calcinosis cutis.

She was started on Vetoryl 30mg which she takes each morning. Her follow up labs on 11/7/12 showed Cortisol Pre 6.0ug/dL and Post 7.0 ug/dL. Another set on 3/19/2013 was pre 5.4 and post 7.2.

Her vet was happy with those numbers but she doesn't seem any better or changed since starting the Vetoryl. In particular, her calcinosis cutis has increased in more areas (spine, ears and shoulder blades) and muscle wasting seems worse. We took her to another vet for a second opinion, but he agreed those numbers are within range.

Am I expecting too much? Is this as good as it gets?

Thanks for listening. Shelly and Lucy

[Budsters Mom]

Hello and welcome Shelly and Lucy,:)
I'm so sorry for the reason that brought you here, but so glad you found us.:)You have come to the right place! There are many K9Cushing's angels standing by to help and stay with you every step of the way. They love details, test results, any information you can get your hands on. The more the better. We will do all we can to help. Others will be popping in shortly to welcome you also. Be ready for lots of questions. The more that we know the more will be able to help. So again, welcome Shelly and Lucy.

Hugs,
Kathy

[Budsters Mom]

By the way, I love Lucy's avatar photo!:D
Kathy

[Roxee's Dad]

Hi Shelly and welcome to you and Lucy :)

The post ACTH numbers according to Vetoryl should be down to 5.4, your Lucy is at 7.2.
Per Vetoryl --

With a post of 5.4 to 9.0 EITHER: Continue on current dose if clinical signs are well controlled OR: Increase dose if clinical signs of hyperadrenocorticism are still evident.

So it appears that Lucy still has some clinical signs of high cortisol and it sounds as if her dosage needs to be tweaked a bit.

Many vets don't realize that a normal post ACTH from a dog on trilostane treatment differ from a dog that is not on treatment.

[Arizona Boston]

I was wondering about that....possible dosage increase. Also thinking about the twice a day dosage for better coverage (that I wouldn't have known about if not for this site!). I think I will make another vet appointment.

A few more details. I recently started her on Marin 1/2 tab for liver support (Milk Thistle) and Allerderm Spot-On (lipids complex) on for skin health. I also changed her from Blue dog food to Honest Kitchen Turkey. She licks her paws a lot and wonder if she has some allergy...(possibly grass?), but thought a change of protein in her food couldn't hurt.

[Roxee's Dad]

Here is a little flow chart put out by Dechra (Vetoryl aka Trilostane) in our resources section, may want to print it out to discuss with your vet.

http://www.dechra-us.com/files//dechraUSA/downloads/Client%20Literature/47902_VETORYL_10mg_Treatment_and_Monitoring_Brochu re_Update_3_2_ps.pdf

Boy if any of us could figure out what causes so much paw licking, we would be so happy. :D So many possible causes, some say boredom, allergies etc...

[Harley PoMMom]

Hi Shelly,

Welcome to you and Lucy from me as well. With Trilostane/Vetoryl the therapeutic ranges are between 1.5 ug/dl - 5.4 ug/dl, a post of 9.1 ug/dl is acceptable if all clinical signs are controlled. The drugs for Cushing's are given to abate the symptoms, so if Lucy is still showing obvious Cushing's signs than a dose adjustment may be needed. Calcinosis cutis does take some time to show improvement, so besides the calcinosis cutis not getting any better how are her other symptoms?

Please know we will help in any way we can so do not hesitate to ask all the questions you want.

Love and hugs, Lori

[Arizona Boston]

Kathy...thanks...that picture was when she was a little younger.

John , I printed out the dose flow chart...thanks.

Lori, It's hard to say. She appears much older that her age (I know that's kind of vague). Her constant hunger is troubling to us, but couldn't that also be behavioral? By 3:30 she is sitting by her food bowl waiting for dinner, and then she will start to bark. Well, truthfully she does that at noon also. I give her green beans for snacks and try and keep it low calorie. We didn't realize how much she was drinking until someone else baby sat for us and told us "boy, your dog drinks a lot!"
But it's the calcinosis that is the worse symptom, and that is markedly increased in the last 4 to 6 weeks.

[addy]

Hi and Welcome,

In what way is the calcinosis cutis worse? I ask only because my Zoe started this disease with mostly skin issues and hair loss. She had mild calcinosis cutis ( according to a derm vet) Her skin got really funky after a surgery in February and she suffered a lot of hair loss, lots of white hard pimples, sebborah scales everywhere and oily deposits on which all of that ended up growing mild yeast and bacteria. She never had oozing or weeping open sores or the large plates of calcium. It was only since we started treating her skin with Ketochlor shampoo and her cortsiol at a post of 4, am I seeing her skin improve and hair growth. The Ketochlor helped the most really, just flushed all that gunk away. The vets all worried her skin would get to dry with the shampoo and baths but I had done my homework and actually it is now much softer. It got a heck of a lot worse before it got better though. And she chewed her paws like crazy last year. I switched her to twice day dosing last summer and after a few months, the paw chewing just stopped and it has never restarted. I cant explain why.:o

That has been a short version of our journey:D:D

Glad you found us and I agree you probably need a dose change. Zoe is down to about 16.5 pounds and takes 50mgs, 30 in the am and 20 in the pm. She still wants to eat all the time, that is just her being extremely food motivated and me taking full advantage of that to encourage her to allow all her eye drops and meds:rolleyes:

I'm so glad you found us.

[molly muffin]

Hi Shelly and Lucky :) Welcome to the interactive part of the forum. :) I lurked to for a long time. That's the good thing, you don't have to be a member to get the information you need. :)

Yep, I'm on board with the others of doing a dosage tweak and maybe going to twice a day dosing. If Lucky is at 30mg once a day, you could try adding 10 at night. If you want to stick with vetoryl brand, or you could go to compounded and split it to like 20/20 or 17/17 if you don't want to add 10mg to the over all. She is coming down, so I wouldn't probably go up too much.

I do think that we have seen good results with the cortisol being lower for cc. Addy's Zoe is a good example of that but every dog is different. CC is one of the hardest and last things to usually go. I think you'll know when it's getting into the right zone though by the eating and drinking returning to more normal levels.

Lucy's picture is a hoot. I love that pose. I don't know how does that without falling over. :p

Again, welcome!

Sharlene and Molly Muffin

[Arizona Boston]

I wish I had documented her CC with photos and dates so I could keep track of it better. I would say around the First of this Year there were maybe one or two spots about the size of a pinto bean along her spine. Now I would estimate about most all of her back and shoulders have patches, some as large as 3 to 4 inches in diameter. Some areas are very visible, some spots are hidden by fur and just found by touch. It reminds me of psoriasis.

Addy.....I will look at that shampoo. I think it will be good to switch to something medicated. The areas seem more raw than before.

One other symptom we noticed early on is bruising and that has not lessened. About once a month since her diagnosis we have found a huge eggplant colored bruise, usually on the inside of her thigh. I think that might be from jumping to get into the car so we are starting to lift her in and out.

Sharlene....Compounding to get the perfect dose is something I never thought of. Thanks for that thought.

[Roxee's Dad]

Hi Shelly,
After reading your last post about the bruising and jumping in the car, I just wanted to warn you that some of our cush pups are prone to
ACL ( anterior cruciate ligament ) injuries. Including myself and Debbie, we have had a few members with ACL problems.

My Roxee also would turn black and blue with slight injuries or in the area they did the ACTH blood draws.

Just an FYI ;)

[addy]

Does it bother Lucky, does he seem itchy?

They have medicated shampoos with different active ingridients. Zoe could not use miconazole, her skin turned bright pink. If it is possible to get a skin scraping done, that would give you an idea of which shampoo to try, based on the results. I spent a month reading dermatology articles on DVM360 and other vet sites.:rolleyes: I did twice a week for a month, carefully watching her skin, then once a week for two weeks and now we will see if we can cut back again. I started out with just 3 minutes left on, then six minutes, building up the time left on the skin to make sure it was not a problem. For Zoe, she will need to continue the medicated shampoo, having her cortisol down below a post 5 ug/dl helps but is by no means a cure for the skin issues. She needs the shampoo.

I'm glad you found us.

[Arizona Boston]

Went to the "new" Vet today. Decided to keep the Vetoryl at 30mg in the AM and then add 10mg in the evening. (so she would be going from 30mg/day to 40 mg/day). She weighed 16.9 lb just for reference. We will redraw her ACTH in 3 weeks.

Her previous vet had her fasting in the AM of her ACTH draw and she was in the office for 4 hours. Our "new" vet said to feed her and she will be there for 2 hours. I'm noticing from the resource articles posted here the the blood draw should be from 3 to 6 hours after her morning dose of Vetoryl. Am I understanding that is the current protocol?

He didn't seem to hopeful as to clearing up her skin, but at my request gave a sample of Benzoyl Plus Shampoo. She doesn't act like her skin seems itchy, just kinda gross to the touch. Addy, does Zoe get too dry with all that bathing? Do you use a conditioner? I rubbed Lucy down with a little Coconut oil last bath, but could use some suggestions.

Then since we are new clients, she got a free bag of Science Diet Treats....Not to look a Gift Horse in the Mouth, but the first ingredient is corn, and the next is wheat. I might soak them in water and feed them to the turtles.

[Roxee's Dad]

Hi Shelly,

With the new increase in dosing, be sure to keep an eye on her for signs of her cortisol going too low, although since it's BID, I don't think it will be an issue.


Her previous vet had her fasting in the AM of her ACTH draw and she was in the office for 4 hours. Our "new" vet said to feed her and she will be there for 2 hours. I'm noticing from the resource articles posted here the the blood draw should be from 3 to 6 hours after her morning dose of Vetoryl. Am I understanding that is the current protocol?


I believe it's 4 to 6 hours after dosing but I may not be up to date.


Can't help much in the skin area, but I am sure Addy will stop by :)

And I had to LOL " soak them in water and feed them to the turtles" :D:D:D

[Harley PoMMom]

Her previous vet had her fasting in the AM of her ACTH draw and she was in the office for 4 hours. Our "new" vet said to feed her and she will be there for 2 hours. I'm noticing from the resource articles posted here the the blood draw should be from 3 to 6 hours after her morning dose of Vetoryl. Am I understanding that is the current protocol?




I posted this reply on another member's Thread so in my laziness I just copied and pasted my answer here. :)



Unfortunately there are different protocols that vets follow when performing an ACTH stim test.

Dechra, makers of Vetoryl, recommend that an ACTH stim test be done 4-6 hours after the dose of Trilostane.

UC Davis' protocol is to have the ACTH stim test done 3-5 hours after the dose of Trilostane.

What is important is to have the stim tests done within the same time-frame. So if your vet wants Pia to have the ACTH stim test done 2-4 hours after her dose of Trilostane, then the additional monitoring tests should always be done in that fashion, so one can compare apples to apples so to say.

Love and hugs, Lori

Giving the dose of Trilostane/Vetoryl with food is vital for it to be properly absorbed. ;)

[Squirt's Mom]

Smart plan with the Science Diet treats - or feed for that matter. ;) It used to be a great feed until Nestle bought it out and changed the formula to be more fitting for cows than dogs. :rolleyes:

[addy]

I have just a minute but promise to stop by tonight. First thing is that if you were fasting before the ACTH test, you did not get correct ACTH results as the drug must be given with food to properly absorb.
So we need to start the new dosing and have a correctly run ACTH test and it should be about 2 weeks after any dose change. The first draw is best done about 3-4 hours after giving the Vetoryl (some say 2-3, some say 4-6, I would insist on as close to 3-4 hours as you can) and then always have it done at the same time after that, keep it consistent. Don't do six hours.

I thought I would need a moisturizer for her skin ( she had very little hair on her torso and neck ) but as her skin started to heal, it got very soft so I never needed one. Every dog is different. Zoe's crud (not sure what else to call it) was not red, it was yellowly, white scales with brownish crud on them and the hard white pinples filled with calcium. We can approach it as " how to treat skin issues in general":):) as what worked for Zoe may not work for your baby.

I have articles booked marked about a product you might use with medicated shampoo. I promise I will look when I get back from work.

Please remember, some IMS vets are just not good with skin. Mine was no help at all so I took Zoe to our GP asked for medicated shampoo and then saw a new IMS, insisted on a scraping to make sure what I was dealing with and told him the shampoo I wanted and cleared it with him that it was ok to treat her skin. He was fully on board.

My point is - we dont really know where your pup's cortisol is because the ACTH tests were not done correctly. So lets fix this problem first and start working on the skin. Keep the faith, we are a determined bunch

[Simba's Mom]

Hello and welcome to you and your cute Lucy, love the name, I have been busy trying to get Simba my furbaby better so sorry I am so late welcoming you and Lucy....this forum is so great, lots of great people on here to give you info and encouragement, settle in and get comfortable, we are all here for you and Lucy!!!

[Arizona Boston]

Thank you Simba's Mom....I've always had fun coming home from work at night and hollering..."Oh Lucy, I'm home!" (if your old enough to remember black and white TV).

And Thank you Harleys Mom...that is just what I was looking for and explains why I have seen 2 different times. Think I will do the feed/pill and then 4 hours, and just stick with that time for each blood draw. I am wondering if her last result was a touch falsely high because of less than optimal absorption. If it wasn't for the skin issues, I would just stick with the 30mg dose.

I will keep sharp eye out for symptoms of giving too much Vetoryl and get it done at 2 weeks.

You guys rock.

PS Couldn't resist adding a pic of my Desert Tortoise "Blondie" to my album

[Roxee's Dad]

Beautiful pics :-)
Oh Lucy.... I'm home! That's Great... Love it :D

[molly muffin]

hehehe, that is funny. I can just hear that cuban accent in my head now. LOL
I love the pictures of Lucy and now Blondie too. :)

Sharlene and Molly Muffin

[addy]

I didn't forget to look for the promised article, just cant seem to find them. If you google DVM360 you will go to a vet site and you can search through many articles on dermatology skin issues and some case studies of calcinosis cutis. I spent a month reading through them all. The gist of it is that many think frequent baths will dry out their skin but when they have various skin issues, they need it.

The benefit of a skin scraping is that it will tell you if there is a bacterial infection deep within the skin, if there is yeast or mites etc. Sometimes they have a bacterial infection along with the calcinosis cutis. If it is minimal and on the surface, medicated shampoo can help, if it is deep with the skin, they need oral antibiotics.

Depending what is all going on with the skin can help you choose the appropriate shampoo.

There are also medicated wipes you can purchase if you choose to just treat the different spots. Since Zoe's was pretty much wide spread, I only use the wipes on her head and ears.

I must have erased the bookmarks, I have so many:o:o I'll keep looking for the spray I saw suggested.

[khockman]

Oh your beautiful Lucy! Thanks for stopping in on iss Millie's thread...CC is a TOUGH road, but we are going to a derm vet for her skin, and she has been responsive to my crazy # of emails and pictures. This is just such a odd disease and as you probably saw with Miss Millie's pics so terrible to manage. I will say in the past week I feel like we may be turning the corner...Our house does look like a scene out of CSI because the bleeding and oozing has been horrific, but oh well! We gave her her second bath his week and got a lot of the "gunk" off. Now she is pretty hairless and has large hard plaques. She also is starting to randomly bleed in areas like if out of pores (hence the bloody crime scene), but we have oodles of things we are treating her with...in the morning half of her gets treated with DMSO, and the remaining half gets treated the following day. Since it has been hard to bath her we have used a chlorhexidine mousse every night. i am now going to work with vet to introduce coconut oil in places... she has derm visit on friday. she is on two antibiotics to get rid of staph and strep infections in her skin as well. This is only the medication she is on related to skin...she has many more pills...

Keep the faith! It is a very tough road and not sure how bad dear lucy is. Please let me know how all is going with your baby girl and you! I have spent many a nights and days crying!


xoxoxo,
Kerry (Millie's Mama)

[lulusmom]

I will be posting this on four members' threads, all of whom are dealing with calcinosis cutis. Kerry, Millie's Mama; Crystal, Annabelle's Mama; Shelly, Lucy's Mama and Pat, Peety's Mama.

I've seen too many dogs on Trilostane who have either had little to no effect on Calcinosis Cutis or a worsening effect while on the drug. Based on the frequency with which we've seen calcinosis cutis on this forum, there seems to be a correlation with the increased popularity of Trilostane for treatment of cushing's. I've had a gut feeling for a very long time that Trilostane is responsible for worsening calcinosis cutis due to it's effects on the sex hormones. Dr. Oliver, was the leading expert on adrenal steroids and he firmly believed that 11-deoxycortisol levels build-up in dogs being treated with Trilostane as did other intermediate steroid such as androstenedione, 17-hydroxyprogesterone, estradiol and progesterone. I've never been able to find anything in layman's terms that explains the affect, if any, these steroids have on calcium metabolism. While searching for that connection, I stumbled upon something even better. It was an abstract of a study entitled, "Canine hyperadrenocorticism: effects of trilostane on parathyroid hormone, calcium and phosphate concentrations". The last sentence of that abstract was eye opening.


[B]Despite no significant difference between calcium concentrations in the pretreatment HAC and control groups, calcium concentrations increased significantly with treatment....and....These results show that adrenal secondary hyperparathyroidism resolves with treatment and suggest that increased calcium and phosphate levels have a role in its pathogenesis./B]

It looks to me that cortisol isn't the only adrenal steroid that can cause elevations in blood calcium levels. Dr. David Bruyette, a renown endocrine expert, readily admits that he has had bad luck in resolving cc with trilostane. That's pretty telling coming from a high profile specialist who is a contributor to Dechra's continuing education program for veterinarians. This is not a new study. As a matter of fact, I believe it may have been published before Vetoryl was approved by the FDA.

You can find the complete abstract here: http://onlinelibrary.wiley.com/doi/10.1111/j.1748-5827.2005.tb00283.x/abstract

I'm just sharing my thoughts with those of you who may want to start asking more questions of your vets....or you may even consider calling Dechra, the manufacture of Vetoryl (Trilostane). I'd be very interested to hear what they have to say about this study.

Glynda

[labblab]

For folks who want to share general thoughts and comments about this study that Glynda has found, I've created a new thread in which our comments can be consolidated all in one place:

http://www.k9cushings.com/forum/showthread.php?t=5509

Marianne

[Arizona Boston]

Here are Lucy's ACTH numbers which were done today:
pre 8.1
post 5.6
(Vetoryl was given 0700 with food, drawn at 11:00)

Her current dose of Vetoryl is 30mg AM and 10 mg PM. She is 18lbs.

C Cutis is somewhat worse with lesions now inside both ears. All other signs such as muscle wasting, pot belly, back legs tremble remain.

My thoughts are to increase to Vetoryl 30mg AM and 30mg PM or use the Diamondback compounding to 25 mg AM and 25 mg PM....if it would help the C Cutis.

I did not realize until reading here that Diamondback is a local company for me and that it may actually be cheaper than the Vetoryl Brand. That would be very helpful.

I got the lab results on my machine this evening and will discuss with the vet tomorrow.

Any thoughts?

Shelly and Lucy

[Arizona Boston]

Glynda, I could not access the Journal Article without an account. Maybe I can ask my vet about it?
Because my other option is to change to Lysodren like Crystal is doing with Annabelle. I am having the feeling that what I've been doing the last 9 months has been a waste of time and money.

[molly muffin]

To me it is strange about the pre number being so much higher than the post number on the ACTH test. I am really interested to see what the others who have been here and seen results for a long time think about that.

hugs,
Sharlene and Molly Muffin

[frijole]

If my feeble memory is correct there IS significance to a pre number that is higher than the post when using trilostane. So I'm glad you brought it up. Wish I could remember what Marianne told me. :o:D:o

I'm surprised the CC has not improved because the number on the test is actually pretty good. You could be right... you might have to switch to lysodren. I used it for almost 5 yrs with success. Hang in there you are doing everything right. Kim

[addy]

Zoe's pre has been higher than her post on her last three stims. I found an answer by Dr. Peterson saying, lab error in mixing up the numbers or incorrect injection (stimulating agent not handled correctly ot old, I guess).

The new IMS wondered the same thing about Zoe's tests, why she has elevated pre but could not answer the question. I contributed it to stress and Zoe always having on going other non adrenal health issues that bother her.

Hopefully if Marianne has more info, she will let us know.:):):):)

[BostonLover]

Glynda, I could not access the Journal Article without an account. Maybe I can ask my vet about it?
Because my other option is to change to Lysodren like Crystal is doing with Annabelle. I am having the feeling that what I've been doing the last 9 months has been a waste of time and money.

I know how you feel. I think we wasted 15 months on Trilostane-It made everything worse for her. AnnaBelle is on her 5th day of Lysodren with no changes, but she is on a very low loading dose. We go for ACTH tomorrow at noon. Her CC has DEFINTIELY gotten worse and is spreading faster and faster. :( I feel so bad for her. Give Lucy kisses and hugs from us:)

[lulusmom]

The link I provided is to the abstract of the study. Unfortunately, the entire study is not available to anyone but subscribing veterinarian professionals. Sometimes I'm able to find the entire study but not luck just yet. If I should meet with success, I'll be sure to let you know. In the meantime, anybody can give the url address to their vet to see if perhaps s/he can gain access to the entire study. It's worth discussing with your vet.

[frijole]

Glynda can you check back on this thread to where she asked about the pre being higher than the post on the acth test? My "Alzheimers" is kicking in and I can't remember what Marianne told me... something about when on trilo and the pre is higher than the post numbers.... Thank you!

[labblab]

Hi Guys, it's me! Sorry I am so late in checking in on this thread. Actually, Addy has covered the "answer" I had been given about "higher pre than post numbers" very well. I have also been quoting Dr. Peterson's blog statement (either the two blood samples were erroneously switched, or there was a problem with the stim agent). In addition to those two explanations, when I asked a Dechra technical rep about this some time ago, he also added that the pre number can vary signficantly depending upon the stress level of the dog at the time of the first draw. He said that as long as both draws were higher than 1.45 ug/dl and the dog appeared to be clinically well, he was not personally so concerned about the irregularity in numbers.

However, given Lucy's previous ACTH results, if I were to place a bet I would guess that her two blood samples got switched. Here's her previous history:


She was started on Vetoryl 30mg which she takes each morning. Her follow up labs on 11/7/12 showed Cortisol Pre 6.0ug/dL and Post 7.0 ug/dL. Another set on 3/19/2013 was pre 5.4 and post 7.2.

And here's her current result:


Here are Lucy's ACTH numbers which were done today:
pre 8.1
post 5.6

The pattern makes me very suspicious that her true "post" result this time around was 8.1. If that is true, her cortisol level has never been as low as Dechra would deem optimal in the event that all symptoms are not being adequately controlled (no higher than 5.4 ug/dl). So prior to throwing in the towel re: trilostane, I would indeed want to first discuss a dosing increase with your vet.

I will add that I do believe I have found the complete study write-up for which Glynda has posted the abstract. Due to copyright issues, I do not feel comfortable posting it, but I think there is "more" to the story than the abstract conveys alone. The authors actually state an interest in uncovering causal factors associated with CC, and it is hyperparathyroidism that they seem to be most concerned about in that regard. Conclusions from the full study seem to indicate that trilostane treatment's effect on calcium may actually be a good thing because it may normalize parathyroid function.


Conclusions: Hyperadrenocorticism in dogs causes secondary hyperparathyroidism because of calcium loss, phosphate retention, or both, which resolves with medical control of the hyperadrenocorticism.

CLINICAL IMPACT:
Glucocorticoid excess appears to inhibit vitamin D-stimulated intestinal calcium transport. Declining serum ionized serum calcium stimulates PTH secretion while stabilizing serum calcium concentration. The net result is secondary hyperparathyroidism. Treatment that effectively controls serum cortisol concentrations should reduce pretreatment elevated serum PTH concentration by eliminating the inhibition of vitamin D effects.

So at this point, I would not yet want any of our readers to leap to the assumption that trilo is automatically ineffective or detrimental in terms of CC. In Lucy's case, especially, I think the jury is still out because I'm guessing that, to date, her cortisol levels have never been optimally controlled.

Marianne

[molly muffin]

It actually would fit right in, if the two were reversed and then make sense. In which case, no, there wasn't any control.
I think I have seen on the forum and it might have been Addy's vet who mentioned that the post number needs to be down below 5 and that might help to have the cortisol at a level that help with the cc.
Addy can tell you if that is correct or not.
I know we've seen cc clear up with higher cortisol but every dog is different, so it could be that it needs to be lower for you. It just doesn't seem like the cortisol has been controlled yet.

Sharlene and Molly Muffin

[Arizona Boston]

As always, thank you for the time you all have taken to reply. I wish you were in my actual living room instead of the virtual one. We'd have cake!

Regarding pre higher than post: I didn't even question that, thinking the numbers just needed to be close together. I can see how sample mix up could happen, but certainly not three times in a row as in Zoe's case. Stress of the dog has got to be a big factor, but that would be about the same for each draw...I would think.

The two variables for Lucy this draw are: 1) new vet and 2) first time ACTH was done after eating, previous ones were fasting.

My vet is out of office until Tues and then I will consult with him again. I am leaning towards increasing Vetory to 60 mg for a trial.

Question: trembles....especially in back legs. Caused by the Cushings or caused by Vetoryl?

Shelly

[frijole]

Oh my. The last two acth tests were not done after eating? That voids the results. Quote and link here from one of the world's experts on treating cushings. Kim


With trilostane, it’s extremely important to give the morning medication with food, and then start the ACTH stimulation test 3 to 4 hours later.

Fasting these dogs on the morning in which the ACTH stimulation test is scheduled should be avoided since it invalidates the test results.

http://endocrinevet.blogspot.com/2011/03/whats-best-protocol-for-acth.html

[frijole]

I would print out that article and I would schedule another acth asap and I would demand they do it for free since they have been wasting your money and your baby is suffering over this. Kim

[molly muffin]

It is only the last result where it looked like the numbers were switched.
However, as Kim mentioned and quoted the article, a fasting ACTH, is an invalid test result and does not show true result of cortisol.
At least this vet did do it non-fasting.

I wish these vets would do a little studying before they start treating and testing dogs for cushings. Protocols are very important. :(

Sharlene and Molly Muffin

[Junior's Mom]

frijole, I believe she says this last test was done properly. It was the ones before that, that were done while fasted.

[frijole]

:):D:) Thanks for straightening me out... was having a heart attack. Sorry about that guys. I better have another cup of java. Kim

[Arizona Boston]

I could have worded that a little better....

The two new variables on the most recent draw are :
1) this is the first time her new vet has drawn an ACTH
2) this is the first time she has had an ACTH drawn after she has eaten with her morning dose.

( her original tests done at her prior vet were done fasting....which is one of the reasons I changed Vets)

[Arizona Boston]

Update on Lucy:
One year has passed that Lucy has been on Vetoryl with reasonable ACTH results, but no real improvement in symptoms. Vet # 2 did not impress us and possibly gave us mixed up ACTH results.

So on to Vet # 3. We are wanting to change to Lysodren and the Vet agrees.

Lucy has never has a LDDS test so we are doing that today. They wanted to do an Ultrasound, but I am not doing that for now due to the expense. She had an abdominal X ray that shows enlarged liver, which we would expect with Cushings.

Thanks to this forum I am prepared, know what to expect and what questions to ask. I will post again soon with her LDDS results.

[Harley PoMMom]

Why is the vet having a LDDS test performed now? The LDDS test is used for diagnostic purposes and is not used to monitor treatment.

Hugs, Lori

[labblab]

Yes, I "second" Lori's question. :confused:

If Lucy is still taking the Vetoryl, the diagnostic value of the LDDS (which is the only use of the test) will be skewed.

Marianne

[molly muffin]

That is weird. Do they understand that Lucy has been on vetroyl? LDDS is only good if the dog has not bee on treatment for cushings. Once you are treating, then it's a whole different ball game and ACTH is the only reliable test. Has there been a wash out period prior to the LDDS test? Like 30 days or more at least.
Also to switch from vetroyl to lysodren requires a wash out period too.

Very weird.
Sharlene and Molly Muffin

[Arizona Boston]

Lucy has been off Vetoryl (actually Trilo) for 27 days, prior to her LDDS this AM. Her new vet did not want to start her on Lysodren without ever having one.

[molly muffin]

Well that is a bit better than if she was still on it. whew. Still not sure how valid the LDDS will be, but we'll see when the results come in.

So when are you thinking of staring lysodren? or are you waiting on the results of the LDDS? It is the ACTH results that you will need to have to compare where the cortisol is now compared to where it goes when the lysodren starts.

How is she doing now off the vetroyl? Are they thinking she doesn't have cushings at all? Otherwise I'm still puzzled about an LDDS test at this point.

Isn't it a pain trying to get correct diagnostic information with this disease.

hugs,
Sharlene and Molly Muffin

[Arizona Boston]

She is doing about the same as when she was on Vetoryl/Trilo. Hungry all the time, thin skin and coat, calcinosis, bruises, muscle wasting, and pot belly. Her legs are weak and she can't jump up onto a chair. Drinking and urine output have never been her symptoms, but they are also unchanged.

Her new vet is very conservative and also expensive.

[Harley PoMMom]

The symptoms mentioned in your first post along with the high ACTH post results plus the calcinosis cutis do strongly point to a Cushing's diagnosis, and IMO, having a LDDS test done now would not be beneficial. Since a decision is being considered in switching Lucy from Vetoryl to Lysodren I believe money would be better spent on another ACTH stimulation test.



My Boston Terrier Lucy is 10 1/2 and was diagnosed with Cushing's last November when her pre dental lab work showed elevated liver enzymes, and she also had a UTI. Her ACTH on Nov 3, 2012 was Cortisol Pre 9.0 ug/dL and Cortisol Post 30.0 ug/dL. At that time the most noticeable symptoms were increased hunger and thinning hair, but when we researched the disease, we realized she also had increased water consumption, panting and and pot belly that we had just attributed to aging. She also has a few skin lumps we now know are calcinosis cutis.
Shelly and Lucy

[lulusmom]

Ditto to what Lori said.

[Arizona Boston]

Well shoot...that was some money wasted then. Besides, I hated leaving her at the Vets for 8 hours. I'll get the results in a few days.

I'm wondering... if the half life of Vetoryl is so short ...why is the washout period between Vetoryl and Lysodren 30 days long? I understand you don't want any Vetoryl still masking the symptoms when you start the Lysodren, but wouldn't it be all out of the body after just a couple of days?

[lulusmom]

The drug may be eliminated quickly but it's effect on the adrenal glands can have lasting effects. That is why it is always better to wash out for 30 days. Some specialists don't necessarily feel that way if a dog is overtly symptomatic and post stimulated cortisol level is high enough. What is high enough? Some think it's any thing over 9 or 10 ug/dl but again, only if the dog is symptomatic. When I switched my cushdogs from Trilostane to Lysodren, one of them didn't become symptomatic until her post stimulated cortisol hit 25 ug/dl. That was a few years back but as I recall, it took a good two months or more before I felt comfortable starting Lysodren loading.

[molly muffin]

Happy Thanksgiving to you and Lucy.
Hope things are going well!

hugs,
Sharlene and Molly Muffin

[Arizona Boston]

Eek… I haven't posted in a long time.

Here is a short version of Lucy's Lysodren Induction.
She took 125mg AM and 125 mg PM for a total of 250mg/day. She did not have any side effects of nausea/vomiting/diarrhea. I did give Pepcid the first few days. On day 16 she did not eat her breakfast kibble. After days of watching and waiting, I was starting to let my guard down and it almost went over my head. I just thought she wanted a treat instead. A voice from this forum spoke in my head " NO CUSH DOG LEAVES KIBBLE IN THE BOWL" ( author unknown, but thank you).
Pre 2.9
Post2.9

[Arizona Boston]

More thoughts.
Her ACTH numbers have never been that low. Could she have gotten there if she had just stayed on the Vetoryl and had it increased from 40mg to 60mg? Probably. But her ACTH was darn close to being in range while on Vetoryl and her CC just kept getting worse and worse and I wanted to try the Lysodren instead.
If her CC gets better, I'll never really know if it was the change in meds of just getting her ACTH lower that made the difference.

On a related CC note; the vet recommended Sebolux shampoo. Very nice rich lather. We get the heater going in the shower because it has to stay her wet coat for 10 mins. (That's one piece of kibble every 30 secs.) When I rinse it off she is surprisingly silky and not dried out. My Vet charged $32 for 16 oz , but it is available on line for $23.

[molly muffin]

Merry Christmas and a Happy New Year! Sounds like an excellent start. Took a bit for the load it sounds like, but once you are there. :) yay!! :)

hugs,
Sharlene and molly muffin

[molly muffin]

Sebolux shampoo from valley vet, 15.5 oz is 14.99

http://www.valleyvet.com/ct_detail.html?pgguid=720df788-cc15-48e6-bc3c-adb1a4dbd019&gas=Sebolux%20shampoo

Most things seem to be cheaper online from the vets themselves. :)

[Harley PoMMom]

Pre 2.9
Post2.9

Those are really good ACTH stim numbers!! Great job!! Just wondering, have Lucy's symptoms abated too?

Hugs, Lori

[Arizona Boston]

She has a very good week. Her appetite is very good, but not the ravenous uncontrolled eating of times past. She occasionally rejects things like apple slices and her Marin liver supplement that she wolfed down before.

The good: playing with her toys and going for short walks …longer and with more energy each day this week. Just seems "brisker" and more interested in the goings on around her. Able to jump up enough to put her front paws on my chair. A few weeks ago I was occasionally having to carry her to go outside because she was so weak.

The not so good: her CC is still spreading, altho possibly at a lessor rate. Also, oddly, her white skin areas are turning black. First just a smattering of black freckles showing on her tummy, but now her face ( the white fur around her nose) is turning more black.

[Arizona Boston]

I posted a new album with pictures of her CC and her black freckles . At the moment, it almost seems as tho there is a little healing of her skin, altho she is losing a lot of hair. She had Sebolux bath number 5 today.

[Renee]

Thanks for the update. I have been following your thread, watching how the transition from vetoryl to lysodren has been going.

We are doing vetoryl too, but if I don't see an improvement (especially in the CC) in the next 3-5 months, I'll be making a switch too.

[Arizona Boston]

I added some new pictures of the dreaded CC today. I can't believe the improvement. We are thrilled. She is wearing her collar again…for a while she was so raw that I took it off and she looked naked. When I walk her I don't feel like I have to keep a sweater on her for cosmetic reasons…I was always worried that other people would think she was contagious.

Last Nov 1, when she spent the night in the vets hospital, they shaved her right front leg for an IV. That hair never grew back until now..this week it has grown back so much I can hardly see the site any more.

I am still waiting for the spray to arrive in the mail, in the mean time bath number 6 or 7… starting to lose count.

[Harley PoMMom]

So happy to see that Lucy's CC has improved so much!!!! Great job!!!

[molly muffin]

She looks really, really good! How wonderful to have her hair back again.
You've done a great job with her!
I bet she feels tons better too

hugs
Sharlene and Molly Muffin

[Arizona Boston]

Just checking in for Lucy. Her coat is growing in so well we've been calling her wooly mammoth. I know she still has an enlarged heart and liver to cope with, but the psychological difference it has made for us to see her healed on the outside at least has us very encouraged.

Her new coat has lots of gray and she has lost her brindle…reminds me of after someone who has had chemo and her hair grows back in differently.

A question…has anyone ever had their dog have dental without anesthesia? I think it they "wrap" (restrain ) the dog and do what they can… maybe they give a little oral sedation. I plan to look into it. I can't brush Lucys teeth very well and I don't think she can tolerate anesthesia for a traditional cleaning.

Shelly and Lucy

[lulusmom]

All of my dogs had monthly cleanings done by a certified human dental hygienist every month. He would wrap them up like a cocoon which serves not only to restrain them but to calm them. Even my biter handled the experience just fine. I have moved out of state to a rural mountain community and am disappointed that I can't find anyone here who does it. Not all hygienist are created equal so check around and see if you can find a referral. Some grooming shops provide the service and even some vets.

[Arizona Boston]

I would love that. I think it improves their overall health when their teeth and gums are healthy. My last dog was so passive she would let me brush, but Lucy is not about to put up with more than a quick swipe.

CC update…I posted a pic of her hair regrowth.

[StarDeb55]

http://www.choicepetmarket.com/

I have one of these stores across the Ray Rd. from my house in Chandler. They have told me a couple of times when I've been in that they offer anesthesia free dental cleanings once a month for $150, I think. I really didn't investigate any further, so I don't know exactly what they do or how they do it. I do know it's way cheaper than the $400-$600 that my vet will charge.

Debbie

[lulusmom]

My hygienist charged $100 for the first time and $25 for monthly maintenance. Since I always had four to six dogs at my home, he made house calls. My friend also had six dogs and my brother has three so we would take turns having him come to our homes. He had a full day that's for sure.

[Arizona Boston]

Lucy's eating and drinking have increased. And her energy level is down. I guess there is no smooth sailing with this disease. I'm waiting for the office to open so I can make an appointment.

Thanks Debbie for the info about Choice Pet Market….Boston Terrier rescue often has their Dogs there so next time I go in I'll ask about that.

Gotto go….Lucy is barking at her food bowl again.

[grapey]

Wishing you wisdom and healthier days for Lucy.

[Renee]

Just when you think things are stabilized.... then, some symptom comes popping back and its back to another dose tweak. :rolleyes: I sure feel your frustration. I look back through my own thread, and I feel like its so up and down. One day we are good and the next we aren't!

[Arizona Boston]

Lucy had her ACTH this morning and on the way home, in the car, she had a seizure that lasted about 20 or 30 secs. (She has had 2 seizures in the past, but while she was on Vetoryl…)

We won't get the results for a few days, but I expect her "post" will be high. Is there a relationship between high cortisol and seizures?

[grapey]

Oh my gosh, poor Lucy. And poor mom :( How's she acting now?

[Arizona Boston]

Thanks Jen for asking. She returned back to normal about one minute after the seizure and was completely fine once we got home. It is not pleasant to watch though and I am just thinking through the process of how it might be related to the Cortrosyn injection.
I hear her drinking in the background as I type…I'm sure her levels are up again. Maybe mini load her Lysodren or just increase her weekly doses?
Until I hear back from the vet regarding those numbers I'm just giving extra hugs and chicken … I am cutting her chicken with rice and green beans to keep the calories down. :)

[Harley PoMMom]

I just scanned Lucy's thread and couldn't find if Lucy's Cushing's is pituitary or adrenal based. The majority of dogs with Cushing's are PDH, which is a tumor of the pituitary gland. This tumor is usually a slow growing tumor but over time, all dogs with PDH are at risk for continued pituitary tumor development, growth, and invasion and unfortuately seizures can develop.

Sending huge hugs to you and Lucy, Lori

[Arizona Boston]

Thanks Lori. I don't think I ever posted her LDDS.
It was pre 10.3.
post 4 hour 4.6
post 8 hour 8.5
Less than 1.5 ug/dL consistent with pituitary dependent.
That was done11/11/2013 after she had been off Vetoryl for about a month…before she started on the Lysodren.

[Renee]

So sorry to hear about Lucy having a seizure. :( Nothing scarier.

[frijole]

Thanks Jen for asking. She returned back to normal about one minute after the seizure and was completely fine once we got home. It is not pleasant to watch though and I am just thinking through the process of how it might be related to the Cortrosyn injection.
I hear her drinking in the background as I type…I'm sure her levels are up again. Maybe mini load her Lysodren or just increase her weekly doses?
Until I hear back from the vet regarding those numbers I'm just giving extra hugs and chicken … I am cutting her chicken with rice and green beans to keep the calories down. :)

Seizures are common in Cush dogs. If they increase in frequency and length I would talk to the vet but otherwise carry on.

Re the next step re dosing - it depends on the acth results so please post them. And yes - the hugs and extra chicken do help. Hang in there. Kim

[Arizona Boston]

Oh My Gosh :eek: I can't believe these numbers.
ACTH Pre 6
ACTH Post 19!

That explains why her eating and drinking have been off the charts ( and so is her output ). Looking back, I think her eating increased about a week before I really acknowledged it … I'll need to be more observant.
Her last day of her original 15 day Lysodren induction was last Dec 31, so I am guessing that long half life carried her thru Jan, and then in Feb she creeped up.

I buy the Lysodren at Walgreens ( not compound pharmacy ) and I have been giving it with fat, we've never missed a dose.

Her new Lysodren dose is to be 250mg twice a week and 125mg once a week for a total weekly dose of 625mg. Does any body else take that high of dose? The vet says maybe we can decrease it to 500mg/week after a few weeks depending on response.
Shelly and Lucy

[Arizona Boston]

Kim, thank you. I mentioned to her Vet about the seizures and she said same as you did… She said to keep a log of them and probably no action will be needed unless they increase to more than one a week, or last a long time. So far we've just seen the 3 in about a year.

Renee, I was driving so I put the flashers on and pulled off to the side of the road and just stared at her like I couldn't believe it was happening. I'm glad I wasn't in heavy traffic. I don't think the dog is aware of them are they? Like they are not painful or scary for the dog … just the human.

[molly muffin]

You were right, it was creeping back up. Drat! So, mini load?

Seizures sure do scary the crap out of us. I don't know how the dog feels about them, and maybe different types of seizures have different responses too.

I don't like them though and I know that is an emotional response, not a logical one on my part. :)

Hopefully she won't have another one for a good long while!

hugs,
Sharlene and Molly muffin

[BostonLover]

Oh so sorry to hear Shelly! AnnaBelle had 3-4 seizures on the Trilostane, but none on the Lysodren (but she was only on that for 5 months before passing). They were never long, and they were never violent, but super scary.

Sending you and Lucy positive vibes! <3

[Arizona Boston]

Hi Crystal
Thanks for checking in on Lucy. Hope you are doing well with your new Bug!
I'm going with the idea that the seizure happened because her cortisol levels were up but haven't seen any confirmation on that.
You know how small their little "baseball" heads are…there would be much room for any tumor in there!

She is starting on her stronger dose on Lyso today (250mg).

Shelly and Lucy

[BostonLover]

Praying for good results!!!

[molly muffin]

Hope this does the trick for her!

hugs,
Sharlene and molly muffin

[Harley PoMMom]

Eek… I haven't posted in a long time.

Here is a short version of Lucy's Lysodren Induction.
She took 125mg AM and 125 mg PM for a total of 250mg/day. She did not have any side effects of nausea/vomiting/diarrhea. I did give Pepcid the first few days. On day 16 she did not eat her breakfast kibble. After days of watching and waiting, I was starting to let my guard down and it almost went over my head. I just thought she wanted a treat instead. A voice from this forum spoke in my head " NO CUSH DOG LEAVES KIBBLE IN THE BOWL" ( author unknown, but thank you).
Pre 2.9
Post2.9

I'm a bit confused about Lucy's original loading dose, so would you clarify Lucy's Lysodren dose for me, was she taking 125mg twice a day, every day for 15 days or 125mg twice a day, 3 times a week for 15 days?

Hugs, Lori

[Arizona Boston]

I see what you are seeing….. on my signature line below. Her induction was for 15 days taking 125mg am and 125 pm for 15 days, and then after that cutting down to 125mg 3 times a week. Maybe I should redo that note. I just wanted to let people who are loading their dogs that mine took what I thought was a long time…15 days.

[Harley PoMMom]

So if I am getting this right, Lucy's original loading dose was 125mg @AM & 125 mg @PM, every day for 15 days, correct?


Oh My Gosh :eek: I can't believe these numbers.
ACTH Pre 6
ACTH Post 19!

That explains why her eating and drinking have been off the charts ( and so is her output ). Looking back, I think her eating increased about a week before I really acknowledged it … I'll need to be more observant.
Her last day of her original 15 day Lysodren induction was last Dec 31, so I am guessing that long half life carried her thru Jan, and then in Feb she creeped up.

I buy the Lysodren at Walgreens ( not compound pharmacy ) and I have been giving it with fat, we've never missed a dose.

Her new Lysodren dose is to be 250mg twice a week and 125mg once a week for a total weekly dose of 625mg. Does any body else take that high of dose? The vet says maybe we can decrease it to 500mg/week after a few weeks depending on response.
Shelly and Lucy

With a post of 19ug/dl, if this were me, I would try to do the loading again (125mg @AM & 125 mg @PM, every day) because I'm not sold on the vets current dose of 250mg twice a week and 125mg once a week.

[Arizona Boston]

Thanks Lori, I wondered about that because people talk about a 'mini load", not just a dose increase. If the loading dose is supposed to erode the adrenal cortex, then I'm assuming if the maintenance dose is too low, the cortex grows back or recovers? I'll call the vet tomorrow and let her know a mini load seems to be the way to go.

[StarDeb55]

then I'm assuming if the maintenance dose is too low, the cortex grows back or recovers?

You are absolutely correct. The speed of regeneration of the cortex varies with the individual pup. Sometimes it seems that some pups will regenerate their cortex in what seems like a "blink of the eye", others not so much.

I will apologize as I haven't kept up with your thread lately, so forgive me if you have posted this info in the past. Are you giving the lysodren with some type of fat, say peanut butter or cheese. One of my pups adored PB, so I would always hide his lyso in a blob of PB. My other pup who was a very picky eater wouldn't go for PB or cream cheese, so I started adding 1/4 tsp. of safflower oil to his food on lysodren days.

Debbie

[Arizona Boston]

Thanks Debbie,
I do think her cortex regenerated in a blink of an eye and I missed it. She was starting to bark at her food bowl for about a week before I caught on … I thought she was just spoiled from eating so much during her first induction phase, then one day the light went on in my head and it occurred to be her cortisol levels were up again.
I do give her pill with fat. I start by giving her a small scoop of kibble to make sure she is really hungry, then pill, then either dark meat chicken ( lots of schmaltz … aka: chicken fat!) or sometimes I give her the liquid fish oil poured into her bowl. She also loves peanut butter.
We are doing the reloading induction at 125mg in am and 125mg pm.
Today is day #3 and she woke up us this morning barking for food. I do measure her water also, but for her it is all about the food.
Shelly

Wouldn't it be fabulous if there was a urine dip stick that could measure cortisol levels? I'd buy that.

[goldengirl88]

Just read a little on your thread. Please be cautious of fats. The pills do absorb better with fat, but these Cush dogs have a lot of fat mobilized in their systems already. They can go into pancreatitis which is really not something you want. I only give my Tipper white meat chicken breast with her pills. I give her no other fat except a small amount of salmon oil as her triglycerides are thru the roof from fat moving thru her system. Even though I am attempting to lower her triglycerides I must only give small amounts of the salmon oil as you are adding another fat to their body. It is a hard balance. I never give Tipper any other fat except what is mentioned. Hope everything is going well. Blessings
Patti

[lulusmom]

I learned with my first cushdog that unlike Vetoryl, you need to give Lysodren with something fatty like cream cheese or peanut butter. If given with chicken breast or anything else very low in fat, it will not be absorbed as well into the GI tract.

[goldengirl88]

Glynda is right, I thought you were giving trilostane. I am not versed on lysodren, so please listen to her, sorry I thought you gave trilostane. Blessing
Patti

[BostonLover]

Shelly-I started the Lysodren load in Bells with pill pockets, and they weren't doing the trick so I switched to cream cheese and peanut butter (switching them up of course) and right after that, she loaded pretty quickly...:)

[Arizona Boston]

Update on Lucy

Latest ACTH pre 7.3
post 8.7
This was done on Lysodren 625mg / week
She is eating/drinking too much so I wasn't surprised by those numbers.

We are increasing her to Lysodren 750mg/week.

But there is more. For the last month she has been walking very "stiff". No particular sore spot that I can find.

Her CK has increased from 221 (10/16/13)
to 914 (4/6/14 )
Her Vet is starting her on Meloxican to see if that helps. He also talked about doing a muscle Biopsy in the future, but I don't know if we would do that.

Thoughts?

Shelly and Lucy

[Renee]

A muscle biopsy? Not familiar with that at all. Do tell, what kind of information would this provide?

Good to see her numbers have come down though. I hope the adjusting brings them down closer to where they need to be.

[molly muffin]

The CK seems to be a risk with cushings, as it is listed as one of the causes of a high CK.

This site I found to have the most straight forward information:

http://the-vet.net/DVMWiz/Vetlibrary/Lab-%20creatine_kinase.htm

Bummer that her ACTH is still on the high side both pre and post. Hope this dose increase helps.

hugs
Sharlene and molly muffin

[goldengirl88]

I didn't know if you were aware that when your dog had blood drawn for testing the person drawing the blood can cause the high CK if they are not careful and puncture into muscle with the needle. This happened once to my dog and once to my cat. It can make the CK very high. Blessings
Patti