Dog not responding to Trilostane - switched to Lysodren

[Roberta]

Hello all! I am new to the forum. My approx. 13 year old Italian Greyhound, Emma was diagnosed with Cushing's last fall. I am not exactly sure of her age as she is a puppy mill survivor - I adopted her in 2007). Last fall, I initially brought her in to the vet because I thought she had a UTI (frequent urination). After numerous tests, an ultrasound and a low dose dex test, Emma was diagnosed with Cushing's. Interestingly, her liver is not enlarged and her liver values are fine. Because of her atypical symptoms my vet started consulting with a specialist (and has continued to do so throughout Emma's treatment).

Emma was started on 12 mg of Trilostane per day (she weighs about 14 pounds). An ACTH test was done, and it showed no change. Over the next few months her dosage was increased to 20, 30 then 60 (with ACTH tests between each increase).

After three weeks at 60 mg, her ACT pre-test number was 5 and post test 7.9. Her drinking and urinating subsided a bit, but she was still drinking/urinating excessively. She is also getting weaker, her fur is falling out and she is developing skin issues. Based on this, the specialist determined the Trilostane was not effective and we were going to switch Emma to Lysodren (loading dose of 250 mg per day).

The Lysodren makes me nervous, but Emma is deteriorating before my eyes and I feel I need to try it. I am hyper-vigilant of my dogs and know that I will notice even the most subtle change in Emma. We had to wait a week after stopping the Trilostane to start the new drug - I will give her first dose Monday morning.

I was wondering if anyone else had a dog that did not respond to Trilostane, and if a different treatment ended up working.

Thank you!

[Renee]

Roberta!

I cannot believe you are here. We need to get together. This is Renee, from Polar Pug! Unbelievable!

My girl pug Tobey has cushings and I've been here since last fall.

Who is your vet? Are they consulting with Dr Love??

Can you gather up all your test results and post the values? If your vet has not shared them with you, please call and get copies. We would like to see the progression of the results and what dosage she was on for each test.

A lot of vets don't know the protocols, so that can be a big deal.

[Roberta]

Roberta!

I cannot believe you are here. We need to get together. This is Renee, from Polar Pug! Unbelievable!

My girl pug Tobey has cushings and I've been here since last fall.

Who is your vet? Are they consulting with Dr Love??

Can you gather up all your test results and post the values? If your vet has not shared them with you, please call and get copies. We would like to see the progression of the results and what dosage she was on for each test.

A lot of vets don't know the protocols, so that can be a big deal.
Hi Renee! Great to hear from someone here in Anchorage! And I LOVE Polar Pug Rescue. You guys do such great work. You folks took Miles and Sonny in from Animal Control and I will forever be thankful to you for that.

Emma has been seeing Riley Wilson at The Pet Stop. Because Emma is not the typical Cushing's patient, he has been consulting with a specialist out of state - she no longer does consultations but she does still work with Dr. Wilson when he needs her.

Yes, I can ask for the test results. I'll do that today when I drop off Emma's urine sample. I recall that the ACTH result was 17 when she was on the 30 mg dose (0 - 5 being the desired result). On the 60 mg dose the values did improve, but because none of the physical symptoms are getting better the specialist recommended trying the other drug.

Thanks again for your response. This Cushing's business is an expensive, heart breaking process and it's nice to have the support of people going through the same thing.

[Renee]

Sonny & Miles are still in rescue, as I'm sure you know. I just saw Sonny yesterday. She is doing really well. We would love to find a long-term foster home for her, but so far, we are still looking.

There is another dog here, a boston (Lucy, I think?), that had started on vetoryl, and then switched to lysodren after not seeing the desired results. However, there is also another dog, Trixie, and her progression with vetoryl took quite a while but they stuck with it.... so, it can go both ways.

Since you started on 12mg of trilo, I assume you had it compounded? The compounding, while many do use it, is not always as effective as the brand name. Since you switched to the 60mg, I assume you are using the brand name vetoryl now? Where were you getting the compounded trilostane from?

When you get a chance, can you give a more detailed account of the symptoms that led to the diagnosis, the tests run, the results, and the progression thus far? Has thyroid & diabetes been ruled out? Have you determined if Emma has PDH or ADH?

Tobey is on vetoryl, and currently being well controlled. Dr Jen at Highland is her vet, and she has been wonderful.

There are a number of really, really well experienced lysodren people on here, so I suggest waiting for them to weigh in before you make the switch. Do know, it takes a 30 day washout of the trilostane before you can start the lysodren. You may not get a lot of replies today though, as one of the very special pups on here has just gone to the bridge and many long-timers here will be mourning her passing.

[Renee]

Just wanted to post the link to Shelly and Lucy's thread. A boston terrier that started on vetoryl and switched to lysodren.

http://www.k9cushings.com/forum/showthread.php?t=5424

[Harley PoMMom]

Hi Roberta,

Welcome to you and Emma, so glad you found us! Getting copies of all tests that were done on Emma and posting any abnormal values here would be great, we are especially interested in the results of any diagnostic or monitoring tests that were done for the Cushing's.

Could you tell us what symptoms Emma was displaying that led you or your vet to test for Cushing's in the first place? Trilostane needs to be given with food to be properly absorbed, also the monitoring ACTH stimulation tests have to be performed 4-6 hours after the Trilostane is given, has the vet been following those protocols?

Dr. Feldman, who is a renown Cushing's expert, recommends that when a dog is being switched from Trilostane to Lysodren, or vise versa, that a waiting period of six weeks is needed. Article this info can be found: Cushing's disease and other adrenal gland disorders (http://veterinarynews.dvm360.com/dvm/Internal+medicine/Cushings-disease-and-other-adrenal-gland-disorders/ArticleStandard/Article/detail/672663?contextCategoryId=40534)

We have a wealth of information regarding Trilostane/Vetoryl in our Resource thread which I am providing a link to: Trilostane/Vetoryl Information and Resources (http://www.k9cushings.com/forum/showthread.php?t=185) Please feel free to print anything out ;)

We are here to help in any way we can so do not hesitate to ask all the questions you want.

Hugs, Lori

[molly muffin]

I just want to say hello and welcome to the forum. Renee and Lori have you of to a good start. :)
I'll be looking forward to seeing the test results, see if it might give us some clues as to what is going on and why your baby isn't responding so well yet.

Sharlene and molly muffin

[goldengirl88]

I am just astounded at the switch from 12mg trilostane to 60. I am amazed the dog did not crash. Is this vet experienced with treating Cushings and using these meds? For a vet to recommend this seems scary to me as I would never start my dog at a low level and jump to almost 6 times the dosage. Pease if you go to Lysodren first find out this vets experience with it and keep the dog off trilostane for over 30 days as this dosage management has really scared me. Blessings
Patti

[Roberta]

Hello all - thank you so much for your responses. To answer some of your questions:

Renee - Yes, the 12 and 24 mg doses were compounded. The pills came from Diamondback Drugs in Arizona. The 30 and 60 mg pills were Vetoryl brand. Also, thank you for the link to Shelly & Lucy's thread.

Harley PomMom- I will see about getting copies of all of the test results. Regarding the symptoms that prompted me to bring her to the vet - frequent drinking and urination. I thought she had a UTI. As the months have passed, the additional symptoms are: weak back legs, muscle wasting (very noticeable on her head), fur thinning, skin problems. Yes, I have been giving her Trilostane with food, including on the days she had her ACTH tests. Yes, my vet performed the ACTH test within the 4 - 6 hour window. I will check with my vet today about the 6 week washout period between switching from Trilostane to Lysodren.

Goldengirl88 - Emma did not go from 12 mg to 60 mg in one jump. This happened over a period of months. We would move her to a new dose then test a month later. Because her response to 30 mg per day was so slight the specialist had us take her to 60 mg per day. She did respond a bit better to the 60 mg per day but because her other symptoms were not better she determined this drug was not working for Emma.

I do have complete faith in my vet. He does have experience with Cushing's but because Emma's case was more complicated, he decided early on to bring a specialist into the picture as opposed to playing a guessing game. She has been consulted at every step of the way, and made the recommendation to switch Emma to Lysodren. I am a bit concerned about that waiting period though (we were only going to wait a week) so I'm going to call when they open this morning. I suspect that the waiting period is to allow the dog to return to full symptoms, and since Emma is there already there is no need to wait. But I will absolutely find out!

[Renee]

I am glad you have faith in your vet - but, I must warn you that many vets, even experienced ones, can make mistakes. Point in case - waiting 30 days after a doseage change to run a stim test. Dechra (the makers of vetoryl) instruct for the first stim test after a dose change to be run 10-14 days afterwards. This isn't a huge mistake, but it shows a lack of following protocol. Second point - recommending only a 7 day wait between switching from vetoryl to lysodren. A longer wait is needed, and I do not believe that is so symptoms come back. It would be assumed that symptoms are already not controlled, hence the need for the switch. These are both very, very powerful drugs. I would want the appropriate washout period between them.

How long has Emma been at the 60mg? What were the results of her last stim test?

[Renee]

Another question - have you determined PDH or ADH?

[Harley PoMMom]

Trilostane/Vetoryl and Lysodren/Mitotane are the two drugs generally prescribed for canine Cushing's disease. These two drugs act very differently; Trilostane inhibits with the production of cortisol, while Lysodren erodes the layer of the adrenal glands that produce cortisol.

Trilostane can cause enlargement of the adrenal glands, which makes them plump, and therefore may make the adrenal glands more susceptible to Lysodren's mode of action.

Hugs, Lori

[Roberta]

Yes, the manufacturer does give their recommended protocol, but it would be understandable to expect that some of that can be adjusted depending on the situation. I trust in what the specialist is has had us do in the past, and what she is recommending for the transition to Lysodren.

I did talk to the vets office this morning and we are going to go ahead and start the Lysodren on Monday. Again, this decision was made after consulting with the specialist. Out of curiosity, aside from the Q&A article with Dr. Feldman, what other source recommends waiting 30 days? I did read on the Vetoryl info that a 30 day wait is recommended going from Lysodren to Trilostane,, but I can't find anything else that recommends a 30 day wait from Trilostane to Lysodren.

[Harley PoMMom]

Out of curiosity, aside from the Q&A article with Dr. Feldman, what other source recommends waiting 30 days? I did read on the Vetoryl info that a 30 day wait is recommended going from Lysodren to Trilostane,, but I can't find anything else that recommends a 30 day wait from Trilostane to Lysodren.


and when switching from trilostane to lysodren a washout period of one month or evidence of adrenal function on stimulation testing is recommended.

Treating canine hyperadrenocorticism (Proceedings) (http://veterinarycalendar.dvm360.com/avhc/content/printContentPopup.jsp?id=562352)


Care should be used in switching from trilostane to LysodrenTM. Allow adequate time for either drug’s effects on the adrenals to subside before switching treatments. (E.g., one month off drug; normal or increased stim-cortisol levels).

Treatment Option Considerations Steroid Profiles in the Diagnosis of Atypical Cushing’s Disease Clinical Endocrinology Service/College of Veterinary Medicine/University of Tennessee (http://www.vet.utk.edu/diagnostic/endocrinology/pdf/TreatmentInfoAtypicalCushings201107.pdf)


I also believe that the manufacturer of Vetoryl (Dechra) have recommended a wash-out period to members so I would also suggest that your vet/IMS talk directly to Dechra in order to see whether they have any feedback. The U.S. office has technical reps on staff who are happy to talk with vets, and owners too, about questions such as this. Here is their contact info, and they will respond to either phone calls or email: http://www.dechra-us.com/Default.aspx?ID=365

Hugs, Lori

[Renee]

I realize it may seem like we are doubting your vet's decisions, etc - but, if you read even a few of the threads on this forum, you will see that overwhelmingly, the 'bad stuff' has happened when a vet and/or pet owner has made a breach in protocol.

Lori is absolutely correct in suggesting your vet or you contact Dechra directly. I have contacted them myself, as have many people on this forum, and they are very helpful.

[lulusmom]

Hi Roberta and welcome to you and Emma.

You have already received some excellent information from Lori and Rene but I would like to weigh in and express my opinions and ask a few questions. Please see my comments in blue text below:


Hello all! I am new to the forum. My approx. 13 year old Italian Greyhound, Emma was diagnosed with Cushing's last fall. I am not exactly sure of her age as she is a puppy mill survivor - I adopted her in 2007). Last fall, I initially brought her in to the vet because I thought she had a UTI (frequent urination). After numerous tests, an ultrasound and a low dose dex test, Emma was diagnosed with Cushing's. Interestingly, her liver is not enlarged and her liver values are fine. Because of her atypical symptoms my vet started consulting with a specialist (and has continued to do so throughout Emma's treatment).

What do you mean by atypical symptoms? Was frequent urination her only symptom? Did your vet do a urinalysis, including a culture? Can you tell me if the urine specific gravity (USG) was low. Dogs with cushing's lose their ability to concentrate their urine. Basically the urine is like water that goes right through them, making them drink buckets of water to stay hydrated. You mention that Emma was urinating a lot but you didn't mention excessive drinking.

It is highly unusual for a cushdog to have normal liver enzymes but not impossible. It is also rare to see a completely normal liver as excess cortisol does cause changes in the liver. Were the adrenal glands normal too? Does Emma have piutuitary dependent cushing's or an adrenal tumor?


Emma was started on 12 mg of Trilostane per day (she weighs about 14 pounds). An ACTH test was done, and it showed no change. Over the next few months her dosage was increased to 20, 30 then 60 (with ACTH tests between each increase).

Was all dosing done once a day or twice a day during this time?

After three weeks at 60 mg, her ACT pre-test number was 5 and post test 7.9. Her drinking and urinating subsided a bit, but she was still drinking/urinating excessively. She is also getting weaker, her fur is falling out and she is developing skin issues. Based on this, the specialist determined the Trilostane was not effective and we were going to switch Emma to Lysodren (loading dose of 250 mg per day).

The Lysodren makes me nervous, but Emma is deteriorating before my eyes and I feel I need to try it. I am hyper-vigilant of my dogs and know that I will notice even the most subtle change in Emma. We had to wait a week after stopping the Trilostane to start the new drug - I will give her first dose Monday morning.

I must agree with the others and say that I have concerns about starting Emma on Lysodren without an appropriate washout period. It is imperative that you wait until Emma has robust adrenal function again before switching to Lysodren. You cannot use Emma's symptoms as evidence of robust adrenal function because her last post stim of 7.9 ug/dl indicates otherwise. That number falls within the therapeutic range of 1.5 to 9.1 ug/dl established by the manufacturer of Vetoryl (Trilostane).

I was wondering if anyone else had a dog that did not respond to Trilostane, and if a different treatment ended up working.

A post acth stimulated cortisol of 7.9 ug/dl is evidence that Emma is responding to the drug. It just hasn't resolved her symptoms. If you were her dosing once a day, this could have been the problem. Trllostane has a short half life and it's effects start to wear off any time after eight or nine hours which does not sustain control of cortisol long enough to resolve the symptoms.

I realize that you have complete faith in your vet and that you have decided to start Lysodren tomorrow but I wanted to share some information I learned from the world's premier expert on Lysodren, Dr. Edward Feldman. While most veterinary text books state that you use reduction in drinking as a sign of loading, it is reduction in appetite that is a much better indicator that a dog is loaded. As a professor at UC Davis, Dr. Feldman also has much experience with Trilostane and states that they have had cases of dogs who are well controlled by Trilostane but never see a resolution of PU/PD (excessing peeing and drinking). It is also a well known fact that in dogs being loaded with Lysodren, resolution of PU/PD often lags behind adequate reduction in cortisol. This is particularly true in dogs who have had chronic PU/PD for a very long time as it can take a week or two for the kidneys to regain the solute that was lost before they start to concentrate the urine again. I don't recall you ever mentioning that one of Emma's symptoms was a voracious appetite and if she doesn't have a huge appetite, that really makes me nervous for Emma. If you continue to load Emma until her drinking and peeing improves, you could easily overdose her. You could also easily overdose her in the absence of hyperadrenal activity. Has your vet discussed any of this with you and can you tell us what loading instructions your vet has given you.

Glynda

[Alison]

I just wanted to say hi and to listen to these guys on here.

I trusted our vet with our boy's treatment and we thought everything was going well but his starting dose was double what everyone else would have done and his cortisol crashed - not enough to require anything other than a stop of the vetoryl for 10 days and a retest.

Then he was started back on the dose that the people on this forum recommended from the get-go and again was doing OK, but then here in the UK, we couldnt get the drug for the stim test and I was told baseline cortisol was more than adequate by the vet - till I knew there was something wrong with Cairo and we took him back and he got a stim test (stocks of the drug were back in by that point) and his cortisol wasn't even registering - so he needed emergency treatment and he's not back on vetoryl just now and if he does get put back on it, it will be at a very low dose.

All I'm trying to say is that vets can be wrong sometimes, even though you trust them and they have experience - every dog is different. There is a combined expertise on here and it might be worth questioning the initial diagnosis - for us, Cairo's symptoms were constantly hungry, drinking and peeing loads, panting, lethargy, hair loss on the tip of his tail

[molly muffin]

Hi, so you are starting the loading phase tomorrow with lysodren? Does your vet have experience with lysodren? I'm just curious because it is a very, very different drug than trilostane and works differently. You should have prednisone on hand in case of an emergency (given to you by your vet) and your vet should be available for you in case of emergency 24/7.
Lysodren works by eroding the cortex of the adrenal gland, so be aware of the signs to watch for that shows a load, if the food is normally scarfed down, then something as simple as stopping and looking at you can indicate the load is complete. (always give the lysodren with something like peanut butter, something with a bit of fat to it) BUT give it After the morning meal. In case of a load, you won't give that days lysodren, but wait 48 hours and have an ACTH test done. You wait for 48 hours because the lysodren unlike the trilostane, works for 48 hours after the last dose and continues to erode cortex and lower the cortisol level. 48 hours afterwards gives you an accurate reading of where the cortisol is at.

http://www.k9cushings.com/forum/showthread.php?t=181

I would recommend printing this out and taping it to the refrigerator or something so you can always refer back to it. It is very helpful for going through lysodren loading and our admins and members have all used it when using lysodren.

Good luck and let us know how things are going..

Sharlene and molly muffin

[Roberta]

Hello all - I wanted to check in and let you know what has been happening with Emma. At the direction of the specialist we stopped Trilostane and started Lysodren one week later. Emma's stim test at seven days was about 7 (pre) and 9 (post) - unfortunately I don't have the exact numbers in front of me but the 7 and 9 are close. I felt that she was done loading on day 10 (her sister finished her breakfast first which was unusual) and her stim test results were 4.9 and 5.4. The specialist had me load for two more days and now she will start her maintenance dose of 125 mg. two times per week (she had been loading at 125 mg 2x per day).

She seems to be doing well - I have noticed her back legs are not as weak. The peeing and drinking has gotten better, but not like it was before the Cushings. I was wondering, is that something that will continue to improve over the next few months? She's sleeping through the night now which is such a blessing and relief!!

Emma also started obsessively licking her legs. She was doing it before, but it got really bad, right about the time her cortisol levels were down to about normal. She licked one spot so much that it started to bleed. The vet gave me Apoquel and that really seems to be working. She still licks but not obsessively like she had been. After 14 days I will stop the Apoquel to see how she does. Her eyes are also watering a lot. The vet thinks that perhaps the high cortisol levels were masking an allergy. I know that Cushing's dogs can have skin conditions though. This vet was filling in for my regular vet, who comes back next week. The fill-in vet had been in close contact with the specialist though so all of the direction was coming from her. I think I'll bring Emma in to meet with my regular vet to bring him up to speed on what's been happening (from my perspective :-) Her next stim test is 30 days after starting the maintenance dose.

Any thoughts or suggestions about what happens after starting the maintenance dose (and when the excessive drinking/peeing might fully subside) would be appreciated.

Also - it seems like when Emma has an ACTH test her symptoms (shakiness, drinking and peeing) get worse for a few days. Is that common? What is in those injections anyways? :-)

[goldengirl88]

Welcome to the forum. I just wanted to say my dog Tipper licks her legs too at times. I have on occasion seen her even pull the hair out which is very hard to watch. You are asking about the ACTH? Well the stimulating agent is called Cortrosyn. The dogs are kind of off after having it as it dumps a lot of cortisol in their systems. My dog had severe reactions the first three times, but after that she acts a little strange and then it goes away. Blessings
patti

[Harley PoMMom]

Hello all - I wanted to check in and let you know what has been happening with Emma. At the direction of the specialist we stopped Trilostane and started Lysodren one week later.

I am glad to hear that Emma is doing well, however; when switching from one drug to another the usual recommendation is to have a washout period of 30 days.


Emma's stim test at seven days was about 7 (pre) and 9 (post) - unfortunately I don't have the exact numbers in front of me but the 7 and 9 are close. I felt that she was done loading on day 10 (her sister finished her breakfast first which was unusual) and her stim test results were 4.9 and 5.4. The specialist had me load for two more days and now she will start her maintenance dose of 125 mg. two times per week (she had been loading at 125 mg 2x per day).

Was her ACTH stimulation test done 36 - 48 hours after the dose of Lysodren was given? Lysodren works for 48 hours after it is given so if the stim wasn't performed with in that time frame Emma's cortisol will have dropped further. If Emma starts having symptoms of too low cortisol, which could be; vomiting, diarrhea, inappetence, or she just doesn't act herself, call the vet ASAP, and a dose of perdnisone might be needed. Did the vet prescribe prednisone for you to keep on hand?



She seems to be doing well - I have noticed her back legs are not as weak. The peeing and drinking has gotten better, but not like it was before the Cushings. I was wondering, is that something that will continue to improve over the next few months? She's sleeping through the night now which is such a blessing and relief!!

Sometimes the increased drinking/urinating will take longer to resolve due to renal medullary washout. When a dog has been urinating large volumes it can take longer to rebuild the solute that concentrates the urine.


Her next stim test is 30 days after starting the maintenance dose.

If this were me, since the loading resumed, I would of had another ACTH stim test done 48 hours after the dose of Lysodren was given.



Also - it seems like when Emma has an ACTH test her symptoms (shakiness, drinking and peeing) get worse for a few days. Is that common? What is in those injections anyways? :-)

On the forum we have seen some dogs have a sensitivity to the stimulating agent, most vets use cosyntropin (Cortrosyn).

Please do let us know how things are going, ok? ;)

Hugs, Lori

[Roberta]

Lori, thanks for the info about the drinking/urination. I shall remain hopeful that this will resolve with time!

Yes, I do have Prednisone in case of emergency, and I am ever vigilant about the warning signs of a crisis.

[Roberta]

Good evening all -

Emma, my 13 year old Italian Greyhound was loading on Lysodren and I stopped her pills this morning when she didn't eat all of her breakfast (she has been getting 125 mg twice per day since last Sunday). I have the list of things to watch for and this was the first indication I had gotten that she was done loading. Her last pill was last night.

She wouldn't touch her dinner tonight. I brought out the big guns (canned food) and I got her to eat a few bites. I was giving bites to my other IG in front of her which I think got Emma to eat a little. :-) She also ate a few dog biscuits (her treats).

She has been sleeping all afternoon and is able to stand and walk just fine.

I do have Predinsone on hand and I'm not sure if her not eating is a reason to give it to her. My vet is not reachable by phone tonight but I've left him a message.

Hoping someone might have experience with this.

[labblab]

Hi Roberta,

Welcome to you and Emma! If lack of appetite is the only abnormality you are seeing, if Emma were my dog, I would hold off on giving prednisone for the time being. Emma should be scheduled for a monitoring ACTH on Monday morning, and prednisone given within 24 hours of the test will skew the results.

All bets are off if Emma starts acting genuinely ill with vomiting, diarrhea, severe lethargy, etc. But if her behavior otherwise remains normal, a short-term loss of appetite probably does not require immediate intervention.

Marianne

[Roberta]

Thank you, Marianne! :-)

[labblab]

How is Emma doing today?

Marianne

[Squirt's Mom]

MODERATOR NOTE: I have merged your post about lack of appetite into Emma’s original thread. We normally like to keep all posts about each pup in a single thread as it makes it easier for members to refer back to the pup's history when needed. Thanks!

I have also changed the title of her thread to indicate the switch from Trilo to Lyso.

[Roberta]

Good morning, Marianne!

I was unable to reach my vet last night (he is out fishing on the Kenai River) and I was really worried about Emma so I took her to the 24 hour E-vet. She tested Emma's electrolytes and her kidney function and both were within the normal range, thankfully. She said if either of those were off there might be an issue. Because Emma had already done her ACTH stim test that morning, she said just to go ahead and give her 2.5 mg of Prednisone.

I gave her the Pred last night and when I got up with her so she could drink and pee at 5:00 a.m. I tried to give her a treat and she just sniffed it. We went back to bed and lo and behold, when we got up at 7:30 I made her breakfast and she ate most of it! I made a gloppy mixture of kibble, yogurt and canned food.

The look of extreme discomfort is off her face and she's napping again.

This Lysodren loading business sure is stressful. :-) Especially for an overprotective doggy mom like me!

[molly muffin]

Yes once she had the ACTH it was good to give the prednisone. You're right loading is a nerve wrecking business. So glad she ate and is doing good now. We are all anxious to see what the results if the test are.

Sharlene and Molly muffin

[labblab]

I'm really glad Emma is feeling better! But I'm confused about the ACTH test. Do you mean she already had been tested yesterday morning at the time you decided not to give her the morning dose? Just so you'll know, cortisol levels can continue to drop for as long as 48 hours after a dose of Lysodren, so if she was tested only 12 hours after her last evening dose, her cortisol level may be even lower now.

Marianne

[Roberta]

Yes once she had the ACTH it was good to give the prednisone. You're right loading is a nerve wrecking business. So glad she ate and is doing good now. We are all anxious to see what the results if the test are.

Sharlene and Molly muffin

Thank you, Sharlene!

[molly muffin]

Marianne has a good point that I might have missed. Lysodren lowers cortisol for 48 hours after the last dose. That is why you test 2 days after the last dose to see exactly how low she has gone. Any sooner and you don't get an accurate result as she is going to go lower than what that test shows. So can you just clarify how long after her last test was the ACTH done?

Sharlene and Molly muffin

[Roberta]

Emma's last dose was given Friday night and her test was administered Saturday morning, 17 hours later. I did some Googling on the subject this morning and have not found anything that says the post-loading test must be administered after 36 - 48 hours. I would think if that were a hard and fast rule it would appear in other articles. I found the chart below on line and also here on this board, and it does not specify the test be administered after a certain number of hours. If a window were indeed required for the post-loading test, I would think it would have been noted here. https://www.idexx.com/pdf/en_us/smallanimal/snap/cortisol/cortisol-mitotane-protocol.pdf

I am working with a vet and specialist that I have 100% trust in. Believe me... if I had any doubts I would have gone elsewhere! :)

Don't get me wrong - I have read some pretty horrible stuff on this forum about vets who clearly have no clue about the treatment of Cushings, so I think you guys are doing a wonderful job of providing information and advising folks when blatant mistakes are being made. I'm sure you have saved a lot of lives by educating people. I am so thankful to have this board as a resource - especially when something scary is happening with my precious Emma. On the other hand, understand that a vet who is not adhering 100% to a protocol that you believe in may have years of experience in administering this treatment and based on that experience, chooses the best method of treatment for the particular dog. And I do understand that drug manufacturers also list their own protocol for the use of the drug. These are guidelines, and a good vet is going to know where there is wiggle room and where there isn't. Again it comes down to experience. Some vets have it, and some clearly don't. The scary ones are those who don't, but still proceed without really knowing what they are doing.

I am very anxious to get Emma's results tomorrow and will be sure to share them! I am going to ask him again about the 48 hour thing. I know I asked him before and he gave me a good answer, but I just don't remember what it was.:)

[molly muffin]

Hi Roberta! Did you get the results today?

That would be great if you can remember what your vet told you about the 48 hour wait. I always thought it was because lysodren works for 48 hours after the last dose to continue to lower cortisol. I guess it would depend on how much lower they go from 24 - 48 hours? or even 12 hours.
We have had members who have often reported a continued decrease over 2 day period and I know many vets test after 48 hours because of that. Weird that it wouldn't be in the literature about it though.

It is good to have a vet though with a lot of experience and that you trust. I always think a team is the best option going when it comes to this disease.

Sharlene and molly muffin

[Roberta]

Hi Sharlene!

Well, the results are good.... 2.9 and 3.4. However, she wouldn't eat again this morning (the Prednisone was now out of her system). I talked to my vet before work and he advised to give her another dose of Prednisone. Tonight she was hungry and ate - but refused her kibble, lol! I usually feed kibble with warm chicken broth, a spoon of yogurt, a canned topper, and a squirt of salmon oil. She would ONLY eat the canned food, the little stinker! I'm just glad she ate. We'll see how she is in the morning - and I'll check back in with my vet at 7:15 a.m. before I leave for work.

I told him I'd heard that the Lysodren can continue to work for up to 48 hours and asked why we don't wait to do the test. He kind of laughed and said "I do whatever Sherry (the specialist) tells me to do!" My impression from the conversation is that she has been doing this for so long that based on how long the dog took to load, the starting and ending numbers etc. she can work with test results done within a shorter period of time. He told me this is the most difficult Cushing's case he's ever had... and I appreciate so much that he knew he needed to work with someone with more experience.

So - I asked him why, if her numbers were so good, was she so listless and not eating? He asked Sherry about it and she said she has had a few dogs do this before. She thinks that the rapid drop in cortisol is just hard on their little bodies and it takes a few days to adjust. That actually makes a lot of sense to me. Kind of like withdrawal symptoms. She also said that often times the Cushing's is masking other ailments and when you take away the high cortisol, other illnesses surface.

I believe he said we are going to up Emma's maintenance dose to 250 mg twice a week (but I'm not positive about that). That seems like a lot for a 12 pound dog I think, but the 125 mg twice a week wasn't enough last time.

So - we'll see what tomorrow brings! :)

[labblab]

Congrats on those good numbers! And I'm surely hoping that Emma's appetite picks back up again. It is indeed true that the sudden drop in cortisol can leave dogs feeling yuckky for awhile.

Also, thanks for the update re: the monitoring ACTH testing. I think this is a very helpful conversation because you've prompted me to also try to track down some citations for that 48-hour testing period that we've written about. I've heard it spoken for years, but just like you, now that I'm searching for related confirmation on the internet, I've come up empty-handed so far. So I'm gonna keep looking and will add any updates as I find them. But yes, I must agree that the expertise and experience of a vet will allow him/her to make decisions and judgments that are appropriate to specific situations. I'm really glad you've got such a good team assembled to support you and Emma.

Do keep us updated, OK? (and I will do the same).
Marianne

[molly muffin]

Excellent news on the ACTH numbers. Those are just perfect actually.

We've definitely seen dogs who go through a yuk period when their cortisol drops here on the forum. It does happen, but not with ever dog. Some don't even seem to notice it, but it goes back to that, every dog is different phrase and it is definitely true.

Sharlene and molly muffin

[labblab]

Just wondering how Emma is doing, and surely hoping that all is going well!

I also wanted to drop back in to tell you again how glad I am that you prompted the conversation about the timing of the post-loading ACTH monitoring testing. Since we first spoke of it, I've continued to search the internet and also consulted with some other folks. And this is what I've come up with (Drum roll, please!!):

I can find nothing written that formalizes the recommendation we've been giving re: waiting for 48 hours to test. Based on the personal experience of seeing some dogs dropping their cortisol even lower after cessation of dosing, it appears that some clinicians do prefer waiting for a day or two to test, and it was that info that was verbally conveyed to staff here. However, you are absolutely correct that there is nothing in the printed lab protocols nor published Lysodren info that I could find that duplicates this recommendation. I went so far as to email Dr. David Bruyette with this question since he is a noted endocrinologist and at one time was an active member of this forum. His response is that to date no studies have been done that provide evidence to support waiting, and that the protocol at his own clinic is to proceed with testing as soon as loading has been completed.

So this has been a very valuable conversation, and as a result I will be altering my own testing recommendations to members in the future. Who says you can't teach an old dog new tricks?????? (Sorry, I couldn't resist.....:o :p). If it is logistically more convenient to wait for the 1-2 days, then fine, and per the anecdotal experiences that have been shared with us, perhaps that will indeed catch the cortisol at a lower level. But apparently there is no accepted formalized recommendation to wait.

Marianne

[Roberta]

Marianne - thank you so much for your note! I'm so glad you did some further checking (including inquiring with Dr. Bruyette) because it really eases my mind to have confirmation that it is OK to test prior to 48 hours. You know it's kind of funny - I did a lot of research on Cushing's once Emma was diagnosed, because I wanted to know everything there was to know about it so I could be an active participant in her healing. Sometimes when I call the vet's office and talk to one of the techs, I end up telling them something they didn't know about Cushing's or one of the medications. They are great folks and wonderful techs - but I have just one disease to focus 100% of my attention on whereas they need to know about a whole bunch of them. :)

Emma is not doing well. Her appetite has not returned and she is very listless. Pretty much all she does is sleep. She had a vitimin B12 and sub-q fluid injections yesterday but they did not help. She is eating a little every two days or so. I gave her Cerenia this morning and will give her a dose of appetite stimulant (can't remember the name of the drug) tonight. I have offered her everything under the sun. One night she ate some chicken, and another night it was Blue Dog biscuits.

However - there may be another issue. She was scheduled for a dental last March but because we were still trying to get her Cushing's under control my vet and I decided to hold off putting her under anesthesia. For the past month or so Emma has been making "puffing" sounds. My vet thought perhaps it was allergies but we had bigger fish to fry at the moment. Then she started having a yellow/green runny discharge from her left nostril. The other night when she was fast asleep I lifted her lip and looked at the tooth. I gently pressed the gums above the tooth and a big of pus-like stuff oozed out. The lightbulb went on and I realized she probably has an infected tooth.

My vet spoke with the specialist today and the game plan is this: Appetite stimulant and first maintenance dose of Lysodren tonight (yes, that sounds like a bad idea but the specialist said it should be fine. If we wait longer we risk having to re-load). Tomorrow Emma goes in for the tooth extraction (the vet has looked at the tooth already) and hopefully a cleaning if she is doing OK. The specialist still feels that her condition could be due to a rapid reduction in cortisol - but the infected tooth could be a contributor.

I am exhausted and very worried about little Emma. She is my heart dog and I'm not ready to let her go yet.

[molly muffin]

Oh my. Of course you aren't ready to let her ago. It sounds like this could be a definite contributing problem. Not sure I would do the lysodren though on day of the treatment. Infection could even be making the cortisol higher than normal. I am always pretty conservative though and I know you don't want to reload so I understand that. Hopefully those with lysodren experience will pop in with their thoughts.
We are all 100 percent Cushing's and what goes with it 365 days a year. Lol. So we totally get that.

Hang in there
Sharlene and Molly muffin

[My sweet Ginger]

I could be wrong on this but could there be any chance that Emma is suffering from low cortisol rather than a rapid drop of cortisol level at this point from multiple loadings? My pup went through multiple loadings in shorter time frame than Emma's and her Before Lysodren treatment ACTH post number was >50and it came down to a single digit in 7days and she was loaded for 5 1/2 days and two more mini loads followed. I initially thought her sickness was coming from a sudden drop of cortisol level. She became extremely picky with foods, very lethargic, wobbly, sleeps most of days, falls over getting up and while walking... along with a few more neurological symptoms. She required a therapeutic dose of prednisone almost constantly and her symptoms got worse on off days. In the meantime I had to seek a second IMS and she diagnosed Ginger as having a functional Addison's disease and she's still on pred at increased doses now mainly to keep her seizures under control and off Lysodren to this date and it happened more than 6 months ago.
The one thing that tells me that Emma's cortisol level might be too low was both times she responded to prednisone and ate better just like my Ginger did. My 2nd IMS said that was the biggest clue to her.
I know Emma's case is different from mine especially her having an infection on her tooth but I thought it's something to consider. To me Emma's body may've had enough time to adjust to her downward cortisol if her initial loading was achieved prior to your June 1st posting and her second load didn't start until 7/6 and I do think there was a chance her level might have gone lower than 2.9 & 3.4 soon after the ACTH test was done on 7/12.
I'm putting this out there in the hopes that Emma doesn't go through what my Ginger went through all the while suffering when the answer was right there for us to grab just in case Emma doesn't get better soon. I hope she will get better very soon and do well today. Song.

[Roberta]

Good morning, Song!

Thank you so much for your post. Emma did have her electrolytes and kidney function tested the evening of 7/12, nine hours after her ACTH stim test and 24 hours after her last dose of Lysodren. The tests showed her in the normal range. However, I do hear what you are saying and I'm going to ask about maybe testing those things again while she's there today.

Initially I did think the Pred was perking her up but she has had moments, like last night where she seems to temporarily snap out of her funk and follow me around, and she actually ate. I initially associated that with the Pred but since she's been doing the same thing without it I do wonder (her last 2.5 mg dose of Pred was 7/14). BUT - you do make some good points and I'm definitely going to ask about it when I drop her off in an hour or so.

Thank you again!!

[My sweet Ginger]

Roberta, I'm very glad to read your post today that Emma was (is) doing better and ate last night. Maybe her cortisol is coming back after a few days of break from Lysodren meaning her adrenals have not been damaged to the point of no return. It could well be they are starting to regenerate and stimulating again. Ginger's electrolytes were fine too after all that was going on but it doesn't seem like her adrenals are stimulating enough. I really hope she is coming back and getting better on her own tho starting her maintenance on 250mg kind of scares me a little at this point. I wish you and Emma a good luck with her appt. today.

[molly muffin]

Hi Roberta,

How is Emma doing? Did they do a recheck ACTH on her? What did the vet say at your appointment?

Sharlene and molly muffin

[molly muffin]

Hi Roberta, having heard from you and Emma in awhile and I was wondering how she is doing?

Hope all is well
Sharlene and molly muffin