Forest, 10 y/o Shih Tzu - Feedback re:Lysodren (liquid-form)

[kyork9489]

My Shih Tzu, Forest was just diagnosed with cushing's disease yesterday. He is 10 years old. He also just had one of his thyroids removed this past June as he had cancer. I really feel bad for him.

My vet wants to put him trilostane and I want to know if anyone has dogs on this medication and how it works. I do not want him to suffer as he is already on thyroid medication for the rest of his life.

[labblab]

Welcome to you and Forest!

I have only a moment to post, but I just wanted to tell you that I have moved your reply here from where you had originally placed it -- this way, you and Forest will have your very own "place" to ask questions and meet our other members. :)

I'll be back later on to talk some more, but I'm so glad that you have found us!

Marianne

[frijole]

Welcome from me as well! Please tell us a bit more about Forest's symptoms, the test that was done for the dx etc. There are two drugs typically used to treat cushings: lysodren and trilostane. Both work effectively but in different ways. I use lysodren so will let others speak to you about trilo. Glad you found us! Kim

[littleone1]

Hi and welcome from Corky and me.

You have found a wonderful group of people here. They are very caring and supportive. They have a tremendous amount of knowledge to offer.

Would you please let us know your first name. It would be nice to post to you using your name.

Others will be coming on and will be asking you alot of questions about Forest's symptoms, tests that were done along with posting the results. Also, do you know what type of Cushings he has?

Corky is taking Trilostane. He's been taking it for about 2 1/2 months and is doing very well on it. Corky weighs 20 pounds and is taking 20 mg once daily. He has also been on Soloxine for his thyroid for many years.

How much does Forest weigh? How many mg of Trilo does your vet want to start him on?

Terri

[kyork9489]

My name is Karen.

Forest had to go to the vet on Wednesday for tests that lasted 8 hours and was diagnosed. They could not tell where the cushings is coming from but he did have an ultrasound about a month 1/2 ago and it showed no signs of a tumor on his adrenal glands but that they were enlarged. He has a pot belly, thinning hair, hungry, dry skin, face looks thin. I have not noticed him drinking excessively but he has had some accidents in the house. He does have a very sensitive digestive system now. He just got weighed and is 18 pounds.

Does anyone know the side effects with trilostane? My vet doesn't want to put him on this until after Christmas because she wants to make sure that she is available for a phone call in case something happens on Christmas, this scares me.

[kyork9489]

Thanks Marianne I didn't know how to start a thread of my own.

[labblab]

Karen, you are very welcome! Also, here's a link to a thread on our "Helpful Resources" forum that offers a lot of useful information about trilostane:

http://www.k9cushings.com/forum/showthread.php?t=185

I know it is easy to be totally overwhelmed at first, so don't feel as though you should be able to read and "digest" everything that is included on that thread. But you can receive an introduction to trilostane treatment there that should help to make more sense of the medication. And your reading will undoubtedly prompt a whole lot more questions for us...;)

Marianne

[Roxee's Dad]

Hi Karen,
Welcome from me too:) I love all dogs but I have a very special place in my heart for Shih Tzu's. Hope to see some pics soon. :)


Does anyone know the side effects with trilostane? My vet doesn't want to put him on this until after Christmas because she wants to make sure that she is available for a phone call in case something happens on Christmas, this scares me.

Scared is understandable but you shouldn't be..... Cautious and well informed would be a better way to be. Most all of us were very scared at first. :o Sounds like you vet is taking a cautious approach which is a good thing.:)

As Marianne posted, there is alot of good information in our resources section. Side effects of Trilo to watch for that may mean overdosing could be one or any of the following. Loss of appetite, vomiting, diarrhea, lethargy.

The 8 hour test that was performed sounds like it may have been an LDDS? As had been mentioned, it would be very helpfull if you could get all the test results and post them here in your thread. ACTH Stim test, LDDS, blood test (only need to post the abnormal results and include the normal ranges)

The others here as I affectionately call them will be along to help you sort thru this and hopefully make you feel more confidenmt in treating Forest. There is alot of collective experience her from cush parents that are both new and those that have many years of experience.

Once again, welcome to you and Forest and we are glad you found us. :)

[Squirt's Mom]

Hi Karen,

Welcome to you and Forest! :)

With Forest at the vets for 8 hrs of testing that sounds like the LDDS, or Low Dose Dexamethasone Suppression test. With an ultrasound that showed enlarged adrenals but no tumor the odds are you are dealing with PDH - Pituitary Dependent Hyperadrenocortisim. (Hyperadrenocortisim is Cushing's.) This is the form 85% of cush pups have.

A couple of tips for you - start getting copies of all Forest's testing results - the actual results - and keep a file at home of them. This way you will have all his info in hand should you ever have to see a different doc, like on vacation. Plus you will be able to answer our questions a bit easier. ;) Also, it is a good idea to start keeping a diary of Forest's behaviors on a daily basis - his diet, eating and drinking amounts, pee and poop history, sleep patterns, moods, anything different you notice for sure. This way you don't have to try to remember when he vomited up that weird white stringy thing last month. :eek::p

The more you can tell us about Forest and his medical history the better, so I got a few questions for you. Does he have any other health issues that you are aware of? Is he on any meds, supplements or herbs at the moment and if so, what, how much, how often? Is he neutered? Was his thyroid functioning tested? Was diabetes ruled out? What diet is he on? Did the ultrasound show any abnormalities in any of the other organs? Don't be afraid of writing too much...we just love details! :D

I know full well how scary all this is at first. I was a complete basket-case when I got here. :eek: But these good folks took me in and gently led me along until I could start to grasp just a teeny weeny bit of all this stuff. The more I learned, the calmer I became. The same will hold true for you too, I'm sure. That's not to say we can promise easy sailing but we can promise to be with you all the way. Cushing's can be a bit of a roller-coaster ride at times, something we are all familiar with and, in fact, I have season tickets to that particular ride! :p

Knowledge is power and that is never truer than when dealing with Cushing's. Read all you can from the Resources section as well as the threads here; ask lots and lots of questions, read some more and ask more questions. Cushing's is a slow progressing condition so there is usually no rush to take any action until you, mom, are comfortable enough to do so. The drugs used to treat Cushing's are very powerful but also life savers. There is no need to fear the drugs themselves; the problems arise when the vets either don't follow protocol for diagnosing, administering and monitoring the meds, and/or don't educate the parents on what to look for in a crisis, or when parents are less than diligent. I know you are a conscientious mom or you wouldn't be here. You and Forest will do just fine, I have no doubts!

I am glad you found us and hope to learn more about the both of you soon. Just remember, you are not alone on this journey. We will be here to help in any way we can.

Hugs,
Leslie and the girls

[Franklin'sMum]

Hi Karen, and welcome to you and Forest ! :)

I know this is overwhelming at the moment, but the kind folks here are amazing, and very knowledgable. To call this forum a wealth of information is an understatement.

Another question to maybe ask your vet is, is she more familiar/ comfortable with Dechra's protocol or the University of California, Davis's? Which would she be recommending for Forest? (The main difference between the two is the dosage. UC Davis has a more conservative starting point.)

Read, ask questions, read some more and ask more questions, Karen. There's really nothing to be afraid of, just more a state of heightened alert ;)

Jane and Franklin xx
________
Toyota celica gt-four specifications (http://www.toyota-wiki.com/wiki/Toyota_Celica_GT-Four)

[haf549]

Hi Karen:

I just wanted to welcome you to this forum. You're going to find a wealth of information and support here. I'm glad to see that your vet wants to hold of starting treatment until after the holiday, so that she will be available. At this point, there really isn't any need to hurry; better to get everything in place and double and triple checked before proceeding with medication.

My dog Kira has been on trilostane for over a year now and doing very well. We had a rough start and had to review the dosing several times, but we finally got her stablized and haven't look back since.

The side-effects really only seem to show themselves at the beginning of the processes, if at all. The problem is to get the dosing right and then there shouldn't be any side-effects. The side-effects would be due to over-dosing. Most vets look at the dog's weight and calculate the dosage based on that. There are 2 trains of thought; one is that they start at the high-end of the dosage range for your dogs weight; the other starts at the low end of the dosage range. We've had several discussions around this lately and the consensus among the people on this forum and myself in particular, is to start low and work up as needed. This might mean more ACTH stim tests, but a lesser chance of an overdose. Starting the dog on the high-end could lead to an overdose of the drug. The good news is, that with Trilostane, the drug only stays in the dog's system appoximately 8 - 12 hours, which means once signs of overdose are noted, if you stop the trilostane, it will work it's way out of the dog's system rather quickly. Now this is all very simplistic, because of course there is more to an overdose than that. Signs of an overdose are lethargy, vomitting, diahrrea, stopping eating and drinking. These are all serious side-effects and must be addressed quickly (usually by giving the dog prednisone) and stopping the medication. Then the dog should be seen by the vet as soon as possible. Also, don't wait for severe symptoms; better safe than sorry.

This is all very high-level and once you digest some of the information others have posted for you, I'm sure you'll have lots of questions and hopefully we here will have lots of answers for you.

Heidi

[kyork9489]

Yes, Forest had the LDDS test for Cushing's and it came out positive. I do not have a copy of all the test results. My vet called me last night and wants to put him on a low dose of Trilostane but says they need to do multiple tests which are going to be very costly, like $300 each. :eek: She took me by surprise so I will need to call her and speak to her again to get all the details.

I don't want him sick from all this testing and meds, is there any alternatives?:confused:

[haf549]

Yes, Forest had the LDDS test for Cushing's and it came out positive. I do not have a copy of all the test results. My vet called me last night and wants to put him on a low dose of Trilostane but says they need to do multiple tests which are going to be very costly, like $300 each. :eek: She took me by surprise so I will need to call her and speak to her again to get all the details.

I don't want him sick from all this testing and meds, is there any alternatives?:confused:

Karen:

When it comes to Cushings, you want to be as positive as possible that that is the problem. And yes, the tests are costly!! The test your vet is referring to is probably the ACTH stim test. This test is done to get readings on the cortisol levels and is very important in monitoring the treatment.

I'm glad to hear that your vet wants to start your baby on a LOW dosage of trilostane. So many vets start them at the high end of the dosage spectrum. The dosage is originally calculated on the dog's weight. Then about 14 days after starting the meds, they will perform the test again to see the effectiveness of the trilostane. At that point, they will tweek the meds where necessary (up or down). Starting low might mean more ACTH tests, to get the dosage right, but the risk of overdosing is greatly reduced.

I know this is a lot to think about, specially at this time of year. Honestly though, it's money well spent for your and your dogs peace. What kind of dosage is our vet recommending?

Heidi

[Squirt's Mom]

Hi Karen,

The fact that your vet wants to do further testing BEFORE starting the Trilo is a really good sign in my book. :) This indicates your vet is knowledgeable, thorough, and following protocol - which many vets don't, the root cause of most of the problems when treating our cush pups. Starting with a low dose is another good sign! ;)

The initial testing phase is the most expensive; once a firm diagnosis is reached, the costs drop quite a bit. There will be a sort of trickle-down effect with Trilo as it often has to be tweaked frequently at the beginning. But the diagnostic testing is essential as treating a dog misdiagnosed with Cushing's can be rapidly become a crisis that can end in a fatality. The good news is that Cushing's is a slow progressing condition so if you have to wait til after the holidays and save up a few pennies, that will be alright. Trust me, I understand that all too well! :rolleyes:;)

So don't fret, relax and enjoy the holidays as much as you can, and know we are here for you any time.

Hugs,
Leslie and the girls - always

[littleone1]

Hi Karen,

I just want to say that I totally agree what others have said regarding the tests and the dosage. Corky has had three different types of tests done along with U/Ss, biopsies, and lab work. His IMS started him on a lower dosage, which has really worked well with Corky.

I hope all goes well.

Terri

[kyork9489]

My vet actually spoke to me about changing from Trilostane to using Lysodren which she has used more often in the past and feels more comfortable with this drug. I need to start him off on 1.7ml twice a day, every 12 hours. I am so scared of this and the potential side effects, that I will pay close attention and call my vet often to keep her posted on how he is doing.

[littleone1]

Hi Karen,

I hope the treatment with Lysodren goes well. I haven't had to use. Originally when Corky was to start his treatment, he was going to be taking Lyso. I know that scared me. I personally feel much more comfortable with Corky taking Trilo.

If your vet feels more comfortable having Forest taking Lysodren because she is more familiar with it, that's important.

I wish you and Forest the best, and I hope all goes well.

Terri

[Casey's Mom]

Hi Karen, my Casey has been on Lysodren since March and is doing very well.

There is a great resource section on this site - I am not sure how to post the links but I know someone will soon. It has a great article on Lysodren loading and the signs to look for - ideally you should be in contact with your vet daily when you are loading.

Good luck to you and your pup,

Love and hugs,

[Harley PoMMom]

My vet actually spoke to me about changing from Trilostane to using Lysodren which she has used more often in the past and feels more comfortable with this drug. I need to start him off on 1.7ml twice a day, every 12 hours. I am so scared of this and the potential side effects, that I will pay close attention and call my vet often to keep her posted on how he is doing.

Hi Karen,

I'm confused here, but sometimes that doesn't take much. :eek::) Is your Lysodren a liquid form? I've never heard of a dose of 1.7ml before, but then I'm pretty new at this.

The standard form of Lysodren comes in 500mg pills but your vet can rx them in compounded forms too. My boy Harley is taking 80mg, which is compounded.

Here is a link for you on Lysodren:

Lysodren loading Instructions and related tips
http://www.k9cushings.com/forum/showthread.php?t=181

Here are some other links for you that will be helpful too.

Links to Cushings Websites (especially helpful for new members!)
http://www.k9cushings.com/forum/showthread.php?t=180

Helpful Resources for Owners of Cushing's Dogs
http://www.k9cushings.com/forum/forumdisplay.php?s=&daysprune=&f=10

Hugs,
Lori

[kyork9489]

Yes it is liquid form which I think is a little more difficult administering than a pill would be. She also gave me gloves as so I won't get any of it on my hands. They don't want it getting into my skin. I also have to make sure he eats really good right before. (fatty foods):eek:

[haf549]

Hi Karen:

Just saw your post about changing from trilostane to lysodren. Kira is on trilostane and I don't know much about administering the lysodren. However, my one little concern is that you mention giving the meds with food (FATTY foods). Absolutely you should give any of the cushing meds with food, but I'm concerned that you seem to think it needs to be FATTY. Cushpups don't process fatty foods all that well (I think :confused::confused::confused:). Did the vet tell you to give FATTY food? Some fat is OK, such as that in the regular dog food, but extra fatty???? I don't know. Maybe someone else who is giving their dog lysodren can comment further on this. Absolutely the meds should be given with food though; either trilostane or lysodren. Giving the meds with food helps the dogs body absorb the medication better.

Heidi

[StarDeb55]

Lysodren does indeed require adequate fat to be absorbed properly. Most of us who use lysodren frequently give the pills in either peanut butter or full fat cream cheese to insure an adequate amount of fat.

Karen, I have not posted to you before but have been following Forest's thread. I have a 14 yr. old Tzu, Harley, who has been treated with lysodren for nearly 2 years. I have his lysodren compounded since he is on a pretty small dose being only 13 lbs. I, also, did not want to have to cut the 500 mg. tablets. On your liquid lysodren, there should be some indication as the concentration of lysodren in the liquid. This might something like 50 mg/ml. or 100 mg./ml. Could you post that specific amount for us?

Debbie

[Squirt's Mom]

Hi Karen,

I'm a bit different than quite a few folks here in that Trilo scares me much, much more than Lyso does. Lysodren has a long, successful track record in treating Cushing's, has years more studies and use behind it, it is no more "dangerous" to use than Trilo, is more predictable, doesn't elevate intermediate sex hormones (in fact, it lowers most of them is they are naturally elevated), and, as you have learned, more docs are familiar with its use VS Trilo so your pup doesn't end up being a guinea pig.

Your doc is correct to tell you to give a fatty meal with the Lyso. The fats help the Lyso be absorbed. Not every meal should be fatty, just the one you give the Lyso with. Once you are on maintenance, the fewer fatty meals will come into play.

Carefully read and study the link Lori gave you on Lyso.

Lysodren loading Instructions and related tips
http://www.k9cushings.com/forum/showthread.php?t=181

Karen, you will do just fine with the Lyso. There is no reason to fear it more than the Trilo, I promise. The same principles apply - learn all you can, follow directions, watch like a hawk, have pred on hand and use it if needed, keep in touch with us and your vet, and ask lots of questions.

Hang in there!
Hugs,
Leslie and the girls

[acushdogsmom]

I also have to make sure he eats really good right before. (fatty foods):eek:My dog was on Lysodren for more than six years, and he did wonderfully on it. We never had any bad side effects at all and in fact, he got so much better that nobody could even tell he had anything at all wrong with him. :)

Although Lysodren is known to be better absorbed with fat, it is also known to be nicely absorbed in most cases as long as it is given with a meal, and since dogs with Cushing's may be more prone to developing pancreatitits, my Vet (Internal Medicine Specialist) always asked me to keep my dog away from fatty foods, even when giving the Lysodren.

My dog's Lysodren was always given with a meal, hidden in a small piece of melted low-fat cheese that I fed him by hand. I guess there was still some fat in the cheese, but we were definitely asked to use low-fat cheese, not regular fat cheese and not fatty foods of any kind. I know that some Vets recommend giving the Lysodren with a small amount of peanut butter or a small amount of oil, but I just don't think that feeding fatty foods is a good idea at all for a Cushing's dog.

Then again, what may be very fatty to one person might be what another person considers to be just slightly fatty, but my concern is that a dog could end up having a pancreatitis attack from having those "fatty meals", especially during loading when the dog is getting "Lysodren fatty meals" every day for several days in a row.

Just to be an the safe side, can you have your Vet clarify exactly what he/she means by fatty foods? Tell the Vet you are asking for clarification because you want to be sure you don't give so much fat that you inadvertently bring on an attack of pancreatitis.

[kyork9489]

The bottle says 100mg/ml (120ml), my vet said to feed him some can food prior to giving him the lysodren. He had his 2nd ACH stimulus test on Friday, January 15th and I got the test results back which were good and that he can go onto maintenance twice a week. However, on Thursday, he kept wondering around my yard to keep trying to pee, found out he has a UTI. My vet gave me some baytril (68 mg) tablets to take 1/2 each day and also Metronidazole (25mg) every 12 hours for his diarreah.

He had not had the Lysodren since the prior Thursday since his test was Friday morning and I started administering the Baytril Friday night, Sat and Sunday, he did not have a good weekend as he was very listless, and his appetite deminished. He went back to the vet on Monday morning (1/18/10) and was a little dehydrated so they hooked him up to an IV, tried to feed him periodically and kept him overnight. He finally ate Monday night which I was happy and now wondering, what made him feel that way, the Baytril or was it the Lysodren, but he has not been on this since Thursday night. I just want him to be better as he has been through so much!!

[frijole]

The symptoms you are describing: listless, diarrhea etc are signs of low cortisol. Could you please give us the results from the acth that you said were good? It would make me feel better if I knew what they were.

Alot of us have used canned pumpkin (plain, no seasonings in it) for diarrhea. Caution just a bit like a tablespoon in/with his food. Plugs them up real fast. Good for dogs too.

Thanks! Kim

[Squirt's Mom]

Hi Karen,

The signs you are seeing are indicative of an over-dose of Lyso causing the cortisol to be too low. Do you have prednisone on hand? If not, insist your vet give you some today. Also, as Kim said, please get the actual test results of the ACTH and post those numbers here for us. "Good" is truly scary in the face of Forest's behaviors. The ACTH will have a pre and post number followed by a normal range. Please post all of that asap - preferably before you give another dose of Lyso.

This can be very serious, Karen, so just slow down and let us try to help you sort things out for now. We are not vets but we do live with this condition on a daily basis and we know first hand what can happen, so please let us help you and Forest.

Call your vet office right now, ask for those results - pre, post, and normal ranges for each - and tell them to get some pred ready for you to pick up today. Post those test results as soon as you get them.

I hope Forest is feeling better today. Keep a hawk's eye on him for any further signs of his cortisol being too low, and please keep in touch.

Hang in there!
Hugs,
Leslie and the girls - always

[lulusmom]

Hi Karen,

Three more questions. Can you tell us when Forest's last dose of Lysodren was prior to having the acth stim test done. Also, how long did you wait before starting maintenance and what is the dose your vet prescribed for maintenance. Answers to these questions will be important in making sense of the stim test results and what appears to be a possible overdose.

Looking forward to receiving more information.

Glynda

[kyork9489]

His last dose of lysodren was Thursday, January 14th between 7:30 pm and 8:00 pm. 1.7ml. He had the ACH stim test the next morning and also found out his UTI was positive so I gave him the first dosage of baytril Friday around 7:30 pm 1/2 tab (68mg). (no lysodren though still after Thursday) I started noticing the change on Sat morning and his appetite and listelessness got worse but Sunday he did eat some rotisserie chicken and rice.

[kyork9489]

I will ask the vet for a copy of the test today. He has been at the vet since Monday on a IV drip; the vet said he was possibly going to give him some prednisone (which I also was given some but i was only to give it to him if the vet gave me the okay to do so, I opted to call the vet instead) His appetite is getting better and he is supposed to come home today, when I visited him this week, he was not very listless, he wants out of the cage and wanted to come home. I know this is very serious and it is why is has been at the vet's for 3 days now being monitored.

[littleone1]

Hi Karen,

I'm glad to hear that Forest is going to be coming home. I hope he continues to do better.

[frijole]

It sounds like he had too much lysodren to me. The test results were either confirm this or not so it is important. You need to know where you are. I would not give any more lysodren until I knew those numbers and had a comfort that this episode is over and done. Better safe than sorry.

It is best to get the blessings of a vet when giving the prednisone, however, sometimes it isn't possible and dogs that have had too much lysodren require it. It mimics cortisol and gives them almost immediate relief. It might have saved you the 3 days on the drip.

I have never used the liquid lysodren and am wondering.. how easy it is to make sure the quantity is 100% accurate? I tried liquid PROIN for incontenance once and didn't feel I was accurate at all with the drip dispensor. Food for thought... Is there a reason you aren't using pills? Thanks!! Kim

[kyork9489]

I never got a reason as to why the Lysodren is in the form of a liquid, maybe it is because of the concentration. If it could be in the form of a pill, I think it would be so much easier. I normally have to shake the bottle vigorously and I have a syringe to administer and have to make sure there are no bubbles in the syringe, it's not easy. :(

[lulusmom]

Lysodren comes in 500mg tablets and unless the dose can be split in half (240mg) or quarter (100mg), those of us with smaller dogs have to have to use a compounded form of Lysodren. Forest's Lysodren is suspended in beef or chicken broth which some vets think is easier to administer. It was easy to give to my Jojo...he went crazy at dosing time and would lick the syringe clean. We switched to compounded capsules for the reasons you mentioned. It gets gunky and you have to shake it up really well. All you have to do is tell your vet that you prefer to med in capsule form.

Lysodren has a cumulative effect for up to 48 hours so if Forest had his acth stimulation test only 24 hours after his last dose, his cortisol levels would have continued to drop even further. We'll all be interested in seeing the results of the acth stim test.

Glynda

[papaoats]

Hi
I have been reading your thread and wanted to tell you that you and Forest are in my thoughts. Seems like you both have been through a lot. Please keep an update as soon as he gets home. I hope he is doing much better.

My baby is just beginning this process and the more I read the more I am petrified.

[StarDeb55]

Karen, I have not posted to you before but have been keeping track of Forest as I have a soon to be 15 y/o Tzu, Harley, who is rapidly approaching the 2nd anniversary of his Cushing's diagnosis. I wanted to encourage you to talk to your vet about having Forest's lysodren compounded. Harley only weighs 13 lbs, & it would totally insane to try to cut those 500 mg tablets accurately to get the dosage he needs. I would have concerns about how accurate the dosing is with lysodren in liquid form. To show you how small Harley's doses are, he gets 250 mg. of lyso weekly, split into doses of 75, 100, & 75. I have his medicine compounded by Diamondback Drugs in Scottsdale, Az. I know Glynda, along with several other members, use them for their meds, but lysodren & trilostane. They have great customer service, will ship anywhere in the country for a flat fee.

http://www.diamondbackdrugs.com/

Debbie

[kyork9489]

He had only been on Lysodren for 1 week and his levels went to 1.5 which I guess was too low for him since he stopped eating and was very listless. My vet wanted his levels to be between 2 and 5. My vet wants to stop for a month and then do another ACH stimulus test and then he will start maintenance. I guess she didn't realize that he would be very sensitive to the drug.

I spoke to my groomer this weekend and she says she sees so many dogs with cushing's and whenever they go on meds their quality of life diminshes. I don't want him to suffer on this drug and I don't want to quicken his lifespan by doing so. I am really now having 2nd thoughts on this.

[kyork9489]

I know how you feel and now I am having 2nd thoughts on treating him with drugs, I don't want to kill my dog by doing this. I do want him to live but not by making him suffer.

[kyork9489]

Forest is now on 1 mg of prednisone per day and now will stay off Lysodren for a month. I am so scared of Lysodren right now, I am really thinking of not going back to it. I love my dog and do not want to kill him faster.

[frijole]

Hi Karen, I totally understand your fear but wanted to share that my 16+ yr old schnauzer has been on lysodren for over 3 yrs now. Doing great. The hardest part is getting to the point where you are on maintenance. That is after you get to the level between 2 and 5 your vet mentioned. Once you are there you most likely coast and forget about the fear you now have.

We were all afraid of lysodren in the beginning but that is because we didn't understand it. It is hard because unless a vet has a cushings dog they don't really understand how tricky getting that dosage right can be. I agree with Glynda that getting the pills made in smaller doses (called compounding) would make your life soooooo much easier and that way you know that you are giving the right amount without having to measure and use the syringe etc.

Giving the prednisone will make the cortisol levels go up. That is fine right now but you need to be careful because youwant them to end up between 2 and 5. Waiting a month and giving prednisone I fear you will go too far in the other direction and have to do another load. So I would keep a close eye out and if you see any signs of hunger/excess thirst coming back... do the acth test again asap and don't wait for 30 days. There is no exact science to this drug because all dogs are different.

Also regarding the drug itself - it is a life saver. I understand your fears but not treating would be much more harmful to Forest and I know you don't want that. So hang in there and know that we have all been in your shoes and understand. Feel free to ask questions, cry, get mad, whatever you have to do to feel better about this. Once treated and within that 2-5 range your Forest can live a very normal life. Please trust me on this. Most of our dogs die from old age or other illnesses.

Big hugs,
Kim

[kyork9489]

We are not planning on him taking the prednisone for the whole month, just right now since his level was low and affected him so fast. I also just heard some info from my groomer who thinks these meds are just making the dogs she sees much more sicker. I am really confused and I don't want to make a drastic decision and then hurting him more than he already is.

[frijole]

I do not mean to knock your groomer by any means but your groomer doesn't know if the dogs being groomed are on the right dosages etc. A dog that isn't treated will not have a quality life because the organs give out. A dog that is not on the right dosage can have similar issues.

You don't have to trust my word but you can read thread after thread after thread here and see that after treatment dogs do just fine. You can also go to our important thread section and read lots of information from world renowned specialists in cushings. You will see that they talk about getting the dosage right on lysodren and what happens if you don't.

Forest got too much lysodren either because the prescribed dosage was too high or because the amount coming out of the syringe was too much. That is why I recommended using a compounder. Glad to hear you aren't using prednisone for 30 days. I do still recommend you keep a close eye because the numbers can creep up quickly. Loading is the hardest, most stressful part of the process. You made it through that. Even though the numbers were too low, you can still resume dosing once you are between a 2 and 5 and life will be so much easier.

I just wanted you to know that Forest truly can lead a normal happy life and that while your groomer's intentions are good - it is not fair to say that all cushings dogs have a bad quality of life. If that were the case this forum wouldn't exist and we would have all sent our beloved furry ones to the bridge.

Here's a link to our resources if you want to check it out. Hang in there! Kim

http://www.k9cushings.com/forum/forumdisplay.php?f=10

[Harley PoMMom]

Hi Karen,

All dogs respond to Lysodren different, some are more sensitive to the drug but Lysodren is a life-saver to a cushingnoid pup if used properly.

According to Dr Feldman:


Protocol. Page 1570

Maintenance therapy involves choosing a regimen and altering that regimen as required. Dogs that respond to daily o,p' -DDD therapy within 9 days or that have a post-ACTH plasma cortisol concentration less than 2 ug/dl are classified as sensitive and begin a maintenance schedule of 25 mg/kg of o,p' -DDD every 7 days. Those that initially require more than 10 days of therapy or with a post-ACTH plasma cortisol concentration greater than 5 ug/dl are classified as resistant and recieve 50 mg/kg every 7 days. In either situation, the dosage is divided into two to four treatments per week.

http://www.io.com/~lolawson/cushings/articles/feldman5.pdf

My boy Harley is on Lysodren, his treatment plan is geared specifically toward him only. Harley's GP called Dr Oliver, who heads the lab in Tennessee and one of his specialty areas is Endocrinology, to discuss Harley's case with him. Harley's Lysodren is a compounded form.

Please hang in Karen, I know how scary this can be, trust me I was exactly where you are now but educating yourself is the first step to helping Forest...so ask all the questions you want, tell us all your fears and we will try our best to help you in anyway we can.

Love and hugs,
Lori

[kyork9489]

I am glad you are telling me this. I'm sure his dosage was just too much for his system. The liquid isn't too bad to measure but it would have been much more easier to have a pill. My vet is not planning on going on another round of lysodren every day again, it will be just a maint program by giving it to him once or twice a week. Maybe that would have been good enough for the initial round and would not have affected him so much by making him sick. She said his body is very sensitive to it and other dogs she has treated had to be on it for more than a week. I guess she didn't realize his body would have reacted to it that fast. Maybe his maintenance level will be a very low dosage.

[Harley PoMMom]

The one thing with a maintenance dose schedule it should be split up at least 2-3 times a week, the adrenals can grow back fast, that is why it is wise to give the maintenance dose at least 2-3 times a week...JMO and Dr Feldman. ;):)

Love and hugs,
Lori

[kyork9489]

Hi Lori,

How long has Harley been on Lysodren and how long has he had Cushing's?

[lulusmom]

Hi Karen,

I just went back through your thread and noticed that we have no information, other than the Lysodren dosage, Forest was getting during the loading phase. It is very difficult for us to provide meaningful feedback without the benfit of Forest's medical history. Please request copies of all test results your vet did to confirm a cushing's diagnosis and post those results here. Your vet should be happy to provide copies to you. It is always a good idea to keep copies of our baby's records in a folder in the event we ever need to visit an after hours clinic/hospital. Vets on call appreciate having their patient's medical history at their finger tips. It can also save us money so that unnecessary tests are not done. Lastly, it comes in really handy for when members ask questions. :D

Cushing's is one of the most difficult canine conditions to diagnose as no one diagnostic test can be assumed to be 100% accurate. For this reason multiple tests need to be done for validation as well as differentiating between pituitary dependent disease and an adrenal tumor. Speaking of which, did your vet tell you if Forest's cushing's was pituitary or adrenal based?

A huge part of confirming a diagnosis is how the dog presents with clinical signs. Even if all testing is positive for cushing, an experienced vet will not treat a dog that has few or mild symptoms commonly associated with cushing's. A lot of us have had horrible experiences with our gp vets' inexperience so we are always interested in looking over shoulders to make sure a correct diagnosis was done and whether proper protocol was followed. We are not medical professionals but I dare say that many folks here are probably more well versed in the disease than a good majority of gp vets out there.

I have two cushdogs and have immersed myself in the research for the last five years. Experience here shows that most dogs that have adverse reactions to Lysodren and Trilostane can usually be attributed to an inexperienced vet that has not followed proper protocol and has not fully counseled the pet owner about the drug they are administering. Part of that discussion should start with how serious the drug is so that the pet owner understands how important it is to monitor their dog for the slightest sign that loading has been achieved.

We loaded my dog, Jojo, with liquid compounded Lysodren but we were given no more than 9 or 10 days worth and were properly instructed to administer with or after meals, to watch him like a hawk and discontinue dosing if we should see the slightest change in water intake or eating habits, such as finishing his meal in 30 seconds rather than 10 or pausing to look up before finishing his meal. I also received daily calls from the vet until we stopped dosing. Did your vet cover all of this with you?

My cushdogs are 4.5 lbs and 6.5 lbs and have been successfully treated with Lysodren for over a year. Both actually started treatment with Lysodren, switched to Trilostane and switched back to Lysodren a year ago. They did well on both drugs but Trilostane is not a always a good drug of choice for Pomeranians.

I also don't want to knock your groomer but chances are you shouldn't place much stock in what s/he has to say. Cushing's is a difficult disease for us laymen to wrap our heads around so I really think that unless your groomer has lived with the disease, is intimately familiar with the medical history of the dogs she grooms and has researched and understands the mechanism of the drug being administered, s/he is ill equipt to form an opinion as to whether or not a drug is helping or harming her patrons. If my groomer were to form an opinion on cushing's treatments based on my dogs and foster dog, she'd have glowing reports on the miraculous changes as a result of treating with Lysodren and Trilostane.

I know how frightening all of this is but I promise that the more you learn about the disease and its treatments, the easier it gets, the calmer you will become and the end result will be that you will be an excellent advocate for your boy. Please let us help you get to that point by helping us come to know Forest a lot better. A great start would be by posting the results of his testing. We're all here to help you understand what the tests are and what the results mean. We're also here just to hold your hand and support you in any way we can. You're both part of the family and we want to get you through this without any more discomfort for either of you.

Glynda

[StarDeb55]

Karen, I want to reassure you that lysodren is a safe drug when the monitoring dosage protocols are strictly followed. My 1st boy, Barkley, was successfully treated with lysodren for nearly 8 years, crossing the bridge at 15 from medical causes not related to his Cushing's. He had a wonderful quality of life & was my Lhasa/Tzu mix. Harley, my soon to be 15 year old Shih Tzu, has been successfully treated with lysodren for not quite 2 years.

The 1.7 ml you were giving twice a week works out to 340 mg. lysodren as a weekly maintenance dose. Dosages for lyso are calculated based mg./kg. body weight, with the range being from 25-50 mg/kg. For the 340 mg. that calculates out to 41.5 mg/kg which is at the upper end of the range. I would talk to the vet about dropping the mg./kg. dose lower, probably to 300 mg. per week. I would also like to suggest that you go to a maintenance regimen of dosing 3 times per week so the doses are smaller. It might possibly be that the 170 mg. in a single dose was too much for Forest. Each dog is different as to how fast their adrenal glands will regenerate, so you want to make sure you maintain a consistent blood level of lysodren to prevent them from regenerating. The other thing I would strongly suggest is to have the lysodren compounded when you start back with the lysodren. I'm just not all that confident that measuring with a syringe is all that accurate no matter how careful you are.

Last, but not least, no matter when you decide to resume the lysodren, it will be extremely important that you have another ACTH done to make sure that Forest cortisol levels have risen no higher than 5. If you wait to long, as Kim has already mentioned, I would be very concerned that you will end up having to do a re-load.

Please keep us posted. It will get better & we can help you every step of the way.

Debbie

[kyork9489]

I will need to request his copies of his files so that I have them. Yes my vet did go over all the info you discussed in your post. We had been in contact on and off for the week that he was on it. It was odd though, because he eating habits did not change, however, he did throw up the morning of January 14th and I did call my vet and also emergency number. I did give him the lysodren that morning after I fed him and his appetite was still good. He spent the day at the vets office on that Thursday and he still got his Lysodren dosage that evening after his meal but I noticed he was not feeling that well that night, though it was his UTI which they did tell me he had. His next ACH test was on the next day,Friday, January 15th and he was feeling good, no Lysodren that day at all because of the test. On Saturday, January, 16th is when I started noticing signs of less of an appetite and listlessness. He was like that all weekend and went to the vet on Monday, January 18th and was put on an IV since he was a little dehydrated and stayed there for 3 days. He is now on 1 mg of predisone daily since Thursday, January 21st. I'm sure it will be cut down. He is also on baytril for his UTI. I have to call my vet this week to give her an update.

[Harley PoMMom]

Hi Lori,

How long has Harley been on Lysodren and how long has he had Cushing's?

Harley was dx'd in April 09 from a LDDS test and since then his had 2 ultrasounds, a full adrenal panel, 2 endogenous tests, ACTH tests...all to confirm his PDH cushings and he has elevations in all his intermediate/sex hormones. :eek::(:)

In the beginning Harley's cortisol was not elevated, just his estradiol, so his treatment plan was different, but in the end of Nov. we had another full adrenal done and all his intermediate/sex hormones were elevated and his cortisol was elevated also. Since Harley has pancreatitis his GP felt we had to treat Harley differently and that is why she conferred with Dr Oliver.

Harley started his Lysodren Jan. 4th of this year. He gets 80mg 3X a week and is doing well on it but I won't know how well it is controlling the cortisol until his stim test results come back next week. If his cortisol is still high, we adjust his Lysodren up alittle.

Hope this helps.

Love and hugs,
Lori

[kyork9489]

He was actually on the lysodren for 7 days. 1.7 ml every 12 hours. The bottle says at the bottom: 100 mg/ml (120ml) Chicken

[StarDeb55]

Karen, the 1.7 ml based on 100 mg./ml., calculates out to 170 mg, so for the day that's 340 mg. Both a loading dose & maintenance dose are the same, the only difference is that the maintenance dose is the same as the loading dose you were using, but the maintenance dose is split into 2-3 equal doses over the week for the same total dose of 340mg, that you were giving daily. Both loading & maintenance doses need to be between 25-50 mg. / kg.. Based on the weight of 18 lbs. that you gave for Forest when you initially posted which is 8.2 kg., (divide lbs. by 2.2), that is how I got the 41 mg./kg.

Unfortunately, the vomiting that Forest experienced was probably a clear sign that Forest was loaded. Did your vet indicate that any sign such as nausea, vomiting, lethargy, or diarrhea was a sign of loading, if not a possible overload? The other issue is that lysodren is a long acting drug, lasting in a pup's system for about 48 hours, so once the dose is given you can't take it back. The other thing is that you also need to try to time you stims for about 48 hours after a dose of lysodren, so you are checking the cortisol when it reaches its lowest point.

As Glynda has asked, please post those diagnostic test results as soon as you can. We have seen it on more than one occasion in this group that a pup gets into trouble for one of two reasons. The vet is inexperienced with proper protocol when using either trilostane or lysodren, or the diagnosis of Cushing's is flat out suspect.

Debbie

PS- Did your vet tell you to load for a set period of days, since you mentioned you loaded for 7 days?

[kyork9489]

Yes my vet did indicate to me the signs, and gave me information on it also which we both went through, that is why I called my vet when he threw up. What I am surprised about is you saying that the ACH stim test should be given 48 hours after the last dosage of lysodren, he took his last dosage on the 14th and his test was the next day, so it clearly was not 48 hours. I was not told about this. I was only told to give it to him twice a day until his test on the 15th. I think he had to be loaded since he had all the classic signs.

[frijole]

This is all very helpful. So the last dose as you said should have been as soon as you saw the vomit. Then the acth test 48 hrs (more or less) later. Since Forest got continued doses that is most likely what caused the issues.

Your vet was probably reading the information from guidelines and unfortuneately most vets do not have a lot of experience treating this disease. They look at charts that give daily dosing amounts and 7 days. Some dogs load in 2 days! Some, like mine, take forever! (3 mos!)

So it really isn't unusual that Forest loaded in just under 7 days. We see this alot so you are not alone. Hang in there. Glad you found us. Get those test results and know you are not alone in this. Kim

[StarDeb55]

As Kim as said, all dogs are different & can load in widely varying timeframes. When we have a new member who tells us that their vet has told them to load for a specific number of days, this raises a big red flag for us as to the vet's experience in treating Cushing's. To show you have variable the timeframes can be, my 1st boy took 8 days. Usual protocol states that if there has been no change in appetite or water consumption on day 8, you get a stim to see where you are. This is what my vet did, as Barkley showed absolutely no apparent sign , she also told me to hold the lysodren until we got the results of the ACTH back. She calls me the next day, asks me to check the water consumption, & all of sudden there's a 40% drop in water consumption. I had noticed that Barkley was awfully quiet, & he didn't seem quite right when I got home. The vet told me that she wasn't surprised as his ACTH numbers were borderline Addisonian. The vet told me to give prednisone right away, then prednisone 2x daily for 5 days, then we re-stim to see where we are. Barkley got through this small upset just fine, & as I said, lived a wonderful life for 8 more years.

I don't want to sound like I'm bashing your vet, but if they're a GP vet you might want to consider a consult with an internal medicine specialist to help get this sorted out, & get Forest on the right track.

Debbie

[lulusmom]

Hi again,

I'm so glad to hear that your vet gave you good instructions and that you two were in communication through the week. That sure upped the comfort level for me and I'm sure the others as well.

I failed to mention to you that the first time we loaded Jojo he never showed any sign of being loaded until he tried to bury his food one morning. I quit giving him Lysodren until we got the results of the stim test back which came back really low...post stim was .7. What's really scarey is that the acth stim test was done at least 24 hours before the Lysodren would have peaked so that stim number would have been even lower had I waited another day to do the test. :eek: The second time we loaded him, I don't recall that he ever showed any signs of loading and after 8 days we stopped dosing and his post stim was really low, I believe .7 again. He was never listless, no change in water intake and certainly no change in appetite the second time around. He's one of the few that has a perfect poker face through the whole ordeal while mom is standing there every day with a knot in her gut and feathers about as ruffled as you can get looking for anything that makes her go ah ha!!! :D Luckily he never got sick, didn't require prednisone and has done very well on maintenance.

I'm glad to hear that you will be getting copies of Forest's test results and am anxious to see them.

Glynda

[kyork9489]

This is my vet's info:

Dr. Pamela Richard, a Massachusetts native, earned her undergraduate degree in Biology from the University of Massachusetts. Her areas of professional interest include, but are not limited to, internal medicine, general surgery and animal behavior problems

[StarDeb55]

Is this the Dr. Richard at Lockridge Animal Hospital? I have looked at the hospital's website, & I don't see anywhere that it's stated that Dr. Richard is an IMS, internal medicine specialist. The site states she has an "interest" in internal medicine, but that does not me she is certified, going through the speciality training required for IMS certification.

Debbie

[kyork9489]

Yes this is the vet at Lockridge animal hospital. I don't know any vets here that are certified. This is the first I am hearing about this certification.

[frijole]

I learned about IMS specialists when my dog was diagnosed. Vet medicine isn't as advanced and the main specialists are IMS vets. They tend to work the more advanced cases including cushings. Here is a link to locate the ones in your area.

http://www.k9cushings.com/forum/showthread.php?t=182

[MiniSchnauzerMom]

Hi Karen,

Here is a link to Animal Medical Center Emergency & referral of New England. They are located in Nashua, New Hampshire and do have Board certified Specialists. Dr. Kintzer is their Internal Medicine Specialist (was awarded the status of Diplomate ACVIM in 1991). Your regular vet can give you a referral.


Info on the Internal Medicine Dept.
http://www.amcne.com/referralCenter/internal.htm

Info on Dr. Kintzer
http://www.amcne.com/about/staff_kintzer.htm

Louise