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BrittanyandJJ
12-20-2016, 02:55 AM
Hello there.
My canine has recently been diagnosed with Cushings after a lot of testing and a long drawn out process. I live on an island in WA state and am finding that the vets in my area have no experience with the disease. I work part time in San Diego, so on my last visit south I visited a vet who completed an ACTH test and prescribed JJ .5ml Trilostaine 2x a day. On the 10 day retest day I was back in WA and had to explain to my vet what test to run (ACTH). She had to call the vet down south to confirm that I was right in what test needed to be run. This is concerning to me because if she doesn't know what test to run, how can she know what she is looking for in the results. JJ seems to be doing okay internally on his current dose... ACTH response normal. His appetite and thirst have become less ravenous and he is no longer potbellied. I got no instruction from my vet as to what this means. Do I leave his dose the same and when do I have his next ACTH test run? I know it is in specified intervals to monitor how he is doing. Also, JJs skin is a mess. He is suffering Calcinosis Cutis pretty badly. Currently he is on antibiotics to prevent infection. I bathe him every few days in medicated shampoo and try and keep him clean. The bathing seems to help tremendously and the hard spots are becoming less rigid. However, he bleeds periodically has some areas that look like they could easily abscess (pockets of blood, but little or no puss, yet) Battling the wounds is disheartening and seems like eventually infection is inevitable if I don't get it under control. I am wondering if anyone here has had success with the Calcinosis Cutis clearing up after their dog started Trilostaine. I have read on this forum reports that Lysoderm would have been a better drug to start him on, but now that he is on the Trilostaine switching is a big ordeal. None of the vets in my area seem to know much at all about Cushings and certainly not about the Calcinosis Cutis. He had the skin condition before he was prescribed the Trilostaine. Im hesitant to make any rash decisions with the lack of knowledge I am dealing with from the vets available in my area. They never explained CC to me, nor did they seem to know about it themselves... so Im worried they are not prepared to give me the best advice. I am making an appointment in San Diego to consult with a vet to ask these questions, but when he saw my dog he did not know what the CC was either right off... he is also the one who prescribed the Trilostaine. My main query is whether anyone here has had success with CC clearing up whose canine's Cushings was treated with Trilostaine and how long did it take to see results in the skin?

Harley PoMMom
12-20-2016, 10:48 AM
Hi and welcome to you and JJ!

We do have members whose dogs have CC (calcinosis cutis) and are treating them with Trilostane with success. One thing with CC is it usually will get worse before it gets better, also to get some kind of control of the CC a dog's cortisol should be 5 ug/dl or less.

One of members, Renee, is our resident CC expert and I'm sure she'll be along to offer her support and advice, in the meantime I'm including a post from her to another member regarding CC and also here's a link to her thread: http://www.k9cushings.com/forum/showthread.php?t=5908


Hi and welcome. I am so sorry that you are dealing with CC. My pug was first diagnosed with CC in Oct of 2013. Before it was all said and done, she had open lesions from the top of her head to the base of her tail. She is now what I would call in 'remission'.

First, I'll just put this right out there - there is NO cure for CC other than bring the cortisol into proper therapeutic range and keeping it there long term. The proper range is a post of below 5 ug/dl. And, when I say long-term, I mean staying in range for months or for life. My pug stopped her meds for about a month during a bout of pancreatitis. In just 3 weeks, I saw lesions recurring.

There are things you can and should do to help manage the CC, but none of these items will cure it. They can help, that is all.

CC lesions are very susceptible to secondary infection, so I do suggest you run a course of abx on occasion, especially if things are looking particularly bad. In combination with the abx, I also suggest you add a high quality probiotic.

I did use tramadol for pain, as needed. I think they are painful. Or, at least they were painful for my pug.

You may be told that DMSO is a treatment. My personal belief is that it does nothing and is an outdated treatment. But, that is only my opinion, and there are those that have reported good results using DMSO. It will not cure the CC though, so don't think it will. It smells horrific and you'll need to wear gloves when using it. I used it on my pug for about 2 weeks then stopped. I could see it was doing nothing but making her uncomfortable and making my other pugs treat her like she had leprosy.

What I did find helpful for topical treatment was using tea compresses. Not tea tree oil! Just tea bags, like lipton or chamomile tea. I did clip the hair around the areas as well, to keep them open and exposed to air, and I did peal away the scabs that were ready to come off, otherwise they just rotted over the skin. I never covered the lesions up, although I understand covering them may be necessary to prevent your dog from itching them.

Another CC mom, Dawn, had success using a spray she purchased on amazon. I cannot recall the name, something like cetochlor? I think this helped keep infection down.

Some people have used weekly medicated baths. I'm not opposed to this. My personal choice was not to bathe my pug until her lesions were in a significant stage of improvement. I didn't think the sores needed anymore moisture and I didn't want anything else topical on them to irritate the skin more.

I actually think some time in the ocean may not be a bad idea, especially if the sores are crusty right now. If they are open and oozing, then I would not recommend it.

The lesions will bleed, crack, ooze, peel away, look raw and angry, then eventually start to dry out. When they begin to flake and dry out, I believe they are on their way to getting better. Also, keep in mind, they will get worse before getting better, and even as you bring the cortisol down, the lesions that are below the surface will continue to bust through and break open. This went on for about 6 months for us. Hopefully they will not be as angry as the ones that you may be dealing with now though.

Sorry I've typed so much. I'm working a lot right now, so I am not on all the time, but I always watch the CC threads.

There are certain protocols that have to be followed for safe and effective treatment for Cushing's and unfortunately many general practitioner vets are not Cushing's savvy. So many of us have put blind faith in our vets and our poor pups are the ones that suffered for that mistake. Educating yourself with regards to Cushing's is the best help you can do for JJ. And often our members have a specialist brought on board to help with the medical care for Cushing's.

Now, we love details so if you would share more information about your boy that will help us in providing you meaningful feedback, and we get that info from asking a ton of questions, so here are some of mine ;)

Could you get copies of all tests that were done on JJ and post any abnormalities that are listed? With respect to the blood chemistry and complete blood count (CBC), you need only post the highs and lows and please include the normal reference ranges. Would you post the results of the diagnostic tests that were performed on JJ that diagnosed the Cushing's? Does JJ have any underlying illness that he is taking medication for? And if so, what is it and what is the medication? Is JJ's urine diluted and does he have a low urine specific gravity? Is he taking any supplements or herbs? Was the CC diagnosed via a biopsy? Also I see that his Trilostane dosage is in ml so I'm assuming this is a liquid suspension. With the liquid suspension on the label is should state how many mg are in a ml, could you post that for us. And, finally, how much does he weigh?

Just remember you are not alone and we will walk this journey with you. If you have any questions please do not hesitate to ask them.

I am providing a link to our Resource forum which has a wealth of information regarding Cushing's and also includes articles written by some of the most renown veterinarians that specialize in endocrinology http://www.k9cushings.com/forum/forumdisplay.php?f=10

Hugs, Lori

BrittanyandJJ
12-21-2016, 02:42 AM
Hello and thank you so much for your interest and reply. It brought tears to my eyes as prior to this forum I felt very much alone and in the dark. I have compiled all of JJs records by calling the vets he's seen and having them emailed to me. I have quite a bit of blood work and will post abnormalities at the end of this message.

JJ weighs about 11 lbs. He is a large chihuahua. With the pot belly he was up to 13lbs but has since lost the potbelly. He is currently in the care of my friend as I am traveling for work and with his skin in bad shape he didn't come along- this means all his medication is with HIM, but I had her look at the Trilostaine bottle and she says the suspension is 30mg/ml. He is also on a Chinese herbal supplement prescribed by my vet to help with his symptoms which I do not know the name of without looking at the bottle. He takes Liver Happy as well, which is an herbal supplement. Currently, he is also on antibiotics for his skin and bladder, Cefphadrine, I believe it is called. He was taking Ursidol for about a year because his liver enzymes are abnormally high and the vet thought it may be due to his gallbladder working to hard.I have since taken him off of that medication. Yes, the CC was diagnosed via biopsy however the vet never told be the details of what CC is. I had to look it up and then ask for record of biopsy.

Is it common for bladder issues to come along with Cushings? He was having large amounts of blood and protein in his urine. Now he still has protein in his urine and small amounts of blood, which I did not know without having the culture done. Is this "normal" with Cushings?

Thank you for your questions: Here is the blood work results I have. Not sure what all would be helpful for you to know- so I included the whole list of abnormalities. His levels are so off that most of his values are abnormal.

Initial ACTH results are as follows
Cortisol pre 8.0 with reference 1.0-5.0
Cortisol post >50 with reference 8.0-17.0

Follow up ACTH results 10 days later
Cortisol Pre 4.3 with reference 0.0-10
Cortisol Post 8.6 with reference 8.0- 22.0

The bottom of the test states that I should continue with the same dosage if his response is still out of range- but it is not out of range. I have not been told to take any action regarding dosage- so I have continued with the same dose... hoping his decrease in the post ACTH test is not too rapid but it seems very rapid to me. Any thoughts? I have an appointment tomorrow with the vet who prescribed the medication to go over my results.

I have also sent all my records to a specialist in Seattle, who my Canine has seen before. He says he doesn't know much about CC and will have to look into it. He has experience with Cushings but says the CC is not so common?

JJs Urine Specific Gravity is within range at 1.019 reference 1.005-1.055


CBC Test abnormalities
WBC 20.7 High Range 6.0-17.0 k/uL
RBC 4.93 Low Range 5.5-8.5 M/uL
MCV 85.1 High Range 60.0-77.0 fL
MCH 26.2 High Range 19.0-25.0 pg
MCHC 30.8 Low Range 32.0- 36.0 %
PLT 879 High Range 200-500 K/uL
Couldn't get accurate platelet count due to clumping, estimated increase

Manual Differential Abnormalities
Polys# 16982 High Range 3600- 11500 /uL
Bands# 207 High Range 0-0 /uL
Lymphs# 828 Low Range 1000-4800 /uL
Monos# 2278 High Range 150- 1350 /uL
%Bands 1.0 High Range 0-0 %
**Marked polychromasia

Geriatric Chem Screen Abnormalities
Glucose 143 High Range 65- 130 mg/dL
Creatinine 0.2 Low Range .6- 1.6 mg/dL
Na/K ratio 25 Low Range 27- 40
Phosphorus 7.5 High Range 3.0- 7.0 mg/dL
A/G Ratio 1.4 High Range .6- 1.2
ALP 1384 High Range 10- 84 U/L
GGT 55 High Range 0- 10 U/L
ALT 206 High Range 5- 65 U/L
CK 471 High Range 50- 300 U/L
Cholesterol 299 High Range 150- 275 mg/dL
Lipase 1563 High Range 109- 707 U/L

Also, I will include the results of JJs Dexamethasone test which was run BEFORE any of the ACTH test or blood panel. I was told by the vet that it didn't look like Cushings based on that test.

Pre Dexamethasone 8.9 High Range 1.0- 6.0 ug/dL
Post 4 hr DEX .5 ug/uL (normal)
Post 8 hr DEX 0.7 ug/dL

These results were "normal" if they did the low dose test but indicative of PDC if they did the high dose test and no where on the page does it say which test they did.

Thank you, thank you for your response. I am feeling very alone and desperate watching my little guy go through this and feeling responsible for not having educated myself before it got to this point. Finding this forum has changed my approach and I am becoming proactive on JJs behalf.

I hope I got you the information you were wondering about and look forward to hearing anything you have to say- advice or otherwise. I check this thread often, but with my work load have time to post only at night.

Thank you again and I look forward to your thoughts on my situation.

-Brittany and JJ

labblab
12-21-2016, 07:37 AM
Hello Brittany, and welcome from me, too. I see that Lori has gotten you off to a great start, and you've also done a wonderful job of supplying us with helpful info (and with advocating for your little boy!).

There's a lot to talk over, so I'm going to focus on a few things this morning. First, here's a link to a brochure published by Dechra (maker of brandname Vetoryl) that I believe will answer a lot of your questions about both Cushing's and also trilostane treatment:

http://www.dechrace.com/pdfs/vetoryl/VETORYLTechnicalBrochure.pdf

First off, yes, recurrent urinary tract infections are very common in Cushpups. Findings of blood and protein in the urine are common in the face of active infection, and some Cushing's dogs end up with chronic leakage of protein in their urine even when infection has been treated. This is due to some changes that can occur in the kidneys themselves. If chronic protein loss is consistently high enough, then there are some changes that may be recommended, such as adding an ACE inhibitor medication and lowering dietary protein intake a bit. But for the moment, I think we can put that on the back burner as we sort out the more pressing issues such as the calcinosis cutis.

I think many of JJ's lab irregularities can be consistent with Cushing's. Two values that bear watching are his glucose level and his lipase. Cushing's and diabetes are not uncommonly found together, and I would want to be monitoring his glucose level carefully, especially if this blood test was performed on a fasted blood sample. JJ's glucose level is a bit higher than normal, and this may merely be the result of the effect of his previously elevated cortisol level (steroids increase glucose levels in the body). However, if his glucose level persists or increases further now that he's taking trilostane, that may bear further treatment in its own right.

Also, his lipase is elevated. This may also resolve with Cushing's treatment, or it may indicate the presence of co-existing irritation to the pancreas. Acute pancreatitis is associated with abdominal pain, vomiting, and diarrhea. So if JJ is not exhibiting those problems, it's a good thing. But there is additional blood testing that can be done to confirm active pancreatitis if that lipase level does not also improve with Cushing's treatment.

Speaking of fasted vs. nonfasted blood samples, having a fasted sample can be important for the accuracy of certain blood chemistries such as glucose and cholesterol. However, it is important that for dogs taking trilostane, follow up ACTH tests should be performed 4-6 hours after the medication has been given along with a full meal. This allows the trilostane to be metabolized properly. If testing occurs after fasting, the results may appear to be higher than they usually are when the med is given with breakfast. This may lead to the false assumption that the drug needs to be increased in order to lower the cortisol further.

Finally, turning to the cortisol level...it appears as though JJ is taking 15 mg. of trilostane twice daily. That would seem to have been a bit high as a starting dose for a dog of his weight, but his first monitoring ACTH test indicates that as of that time, the dose was fine and his cortisol was not dropping too low. However, it may continue to drop some more during the first month of treatment, so a repeat ACTH is recommended at the 30-day mark. When you look at that link I gave you, you'll find a wonderful monitoring flowchart that tells you exactly what to be looking for in terms of cortisol values.

Because this is the thing -- the norms given on that lab report are for the use of the ACTH for diagnostic purposes. After treatment has begun, an entirely different range is expected. What you'll see is that JJ's follow up of 8.6 ug/dL is desirable longterm, BUT only if clinical symptoms are resolving. If not, even a lower post-ACTH is desired. In the face of JJ's calcinosis cutis, you may indeed want to increase his dose a bit more. But not without another ACTH test to indicate where his cortisol has fallen after at least a month of treatment.

OK, I'm going to pause and take a breath right now ;). Once again, please do look over that brochure. I think it will help prepare you for your appointment tomorrow. And of course, feel free to ask any additional questions in the meantime.

Marianne

BrittanyandJJ
12-22-2016, 02:40 AM
Thank you Marianne!

Your reply was very helpful. Had I not had the information you provided me about watching JJ's Glucose and Lipase I would not have know to bring it up. Had I not brought it up to the vet it would have never been mentioned. I will now be keeping a eye out for changes in those values with treatment (fingers crossed). I feel like it is beneficial to know that Lipase levels are related to the Pancreas as I know Pancreatitis can be avoided if caught in time. No mention had been made to me about checking JJs blood panel again in conjunction with the ACTH retest or checking his electrolytes. The brochure you sent me was very helpful and I will be using the flow chart within it to request the testing suggested. Also, I had to point out to the vet that the two blood draws need to be done at separate times as one requires fasting for accuracy and the other needs to be done within a 2 hour window 4 hours after eating and taking meds. No vet had mentioned those parameters at all. So frustrating... being treated like a hyper vigilant mother when I ask questions and all while being told this is a "tricky" thing to deal with and then having to go over the step by step with THEM.

If there is anything I have learned from my experience with this whole ordeal it is that there is definite value in looking at test results yourself and learning what they mean. It is discouraging that if I do not know what questions to ask nothing will be explained to me. Even more frustrating when I feel like I am explaining things to the people who are supposed to be guiding me through JJs medical decisions.

Thank you so very much for your input.

Many Thanks!
Brittany and JJ

Harley PoMMom
12-22-2016, 11:45 AM
Also, I had to point out to the vet that the two blood draws need to be done at separate times as one requires fasting for accuracy and the other needs to be done within a 2 hour window 4 hours after eating and taking meds. No vet had mentioned those parameters at all.

This dratted disease with all the testing needed can be so frustrating and confusing so I just want to clarify the protocol with the monitoring ACTH stimulation test. ;)

When using the ACTH stimulation test for monitoring treatment the morning of this test the dog will eat his normal breakfast meal with the Trilostane/Vetoryl.

The ACTH stimulation test has to be done within 4-6 hours after the Trilostane/Vetoryl was given.

So, if JJ had his breakfast and Trilostane/Vetoryl at 7 am that would mean that the ACTH stimulation test has to be completed by 1 pm...using the time-frame above as an example: the first blood draw can be taken at 11 am which is for the pre or baseline value; the stimulating agent (usually Cortrosyn) is injected and then an hour later another blood draw is taken which is the post value.

If your vet does use Cortrosyn as the stimulating agent for the ACTH stimulation test and s/he is agreeable to learning, you can save quite a bit of money on the tests and I mean hundreds of dollars. Cortrosyn is what makes the stim test so dang expensive and most vets don't know that you don't have to use the entire vile. You only need to use a fraction of it for smaller dogs who can have multiple tests out of one vile. Dr. Mark Peterson, a renown and very well published endocrinologist created a Q & A website to help educate vets and pet owners. One of his Q & A pages is instructions for vets on how to split and store cortrosyn for future use. Many of our members have helped educate their vets who were happy to learn and save their clients money. Here's is a link to that article: http://www.endocrinevet.info/2011/03/how-to-extend-your-supply-of-cortrosyn.html

I'll keep my fingers crossed that your vet will take advantage of an opportunity to learn and more importantly, save you some big bucks.

Hugs, Lori

BrittanyandJJ
12-23-2016, 02:47 AM
Thank You Harley PoMMom!

I spoke with the specialist today and he says I am on the right track. I am going to have JJs ACTH response tested again at 30 days and will follow protocol. He doesn't check the rest of the blood panel or the electrolytes until 90 day mark if JJ is clinically doing well and feeling okay. He did recommend visiting a dermatologist for the CC if I am still worried about it because they may be able to recommend how to better manage it until it starts to clear. I am out of town right now and am missing JJ so very much. I can't wait to get home and check on his progress! I will post his progress.

Feeling better now that the specialist has agreed to be in charge of checking all the blood work and being in charge of dosage decisions.

Thank you, thank you, thank you!

You have no idea how much finding this forum has helped my whole scene. My questions have been answered and I feel like I am on the right track. It gives me comfort to know you guys are here and thank you for sharing your knowledge. JJ and I are feeling less alone.

Hugs!
Brittany and JJ

labblab
12-23-2016, 08:58 AM
Hey Brittany, we're so glad you guys have joined our family, too! :)

Definitely keep us updated and give JJ a big hug for all of us here. ;)

Marianne

molly muffin
12-25-2016, 12:51 AM
Hello Brittany and JJ and welcome to the forum. Lori and Marianne have a wealth of knowledge.

One thing with CC that we have noticed is that it takes a long time to clear up usually. All those calcium deposits need to come up through the skin. So, it tends to look worse before it looks better. Another is that keeping the post ACTH level down below 5ug, seems to be helpful for cc. I don't think there is any literature stating that but it is something we have noticed on the forum here.

Keeping the lessions dry and clean is important, cut any hair around it and have a good anitibiotic spray that you can use so no antibacterial infections can set into the wound areas.

I'm fully confident that you will become a very good advocate for JJ's care, look what you have learned already! Soon you will know what the numbers mean, which one to keep an eye on and those conversations will be much easier with the vets and specialist as you will be able to have an exchange of ideas for JJ's care. I've always found those conversations to be beneficial and educational in a give and take sort of way.

I'd probably retest the glucose and pancrease not long after the 30 days test, because they were trending higher, so peace of mind I think would dictate checking those out to make sure there is no trending upwards.

Welcome to the forum! You are never alone now. :)

BrittanyandJJ
12-28-2016, 07:27 PM
Hi there and thank you for your response!

JJ is due for his 30 day test the first week of January and I am anxious to see how his levels are. I have talked to a specialist who is aware of the 5 ug/dL goal to start clearing the calcinosis cutis! Yay! He has agreed to be the one making dosage decisions for the Trilostaine.

JJ also has a dermatology appointment on January 16th so that maybe I can learn how to better manage the condition in the meantime and possibly recommend some products.

:-)

For now I am off to pick up a refill of oral antibiotics and prepare JJ for his soak in antibacterial bath. He likes the warm baths.

Happy Holidays from JJ and Brittany

kaibosmom
01-02-2017, 07:26 PM
Just stopping in today and read a few of your posts. I hope you get good results this week. My dog was on trilostane and his CC cleared up eventually. It took time. What seemed to help us as well was the addition of Traditional Chinese Medicine herbs. Kaibo had a lot of skin issues, severe hair loss, very thin skin, and just a small area that was tested to be CC. Over time, his skin improved dramatically and with much more time, finally hair grew back! Wishing you all the best!

Nikki

Bluester
01-03-2017, 05:31 PM
Hello and thank you for your post. My Beagle Blue has a lot of skin lesions and even though she is being treated for her cushings I don't feel any of the Vets she has seen have paid much attention to her skin. Worst part is the hair loss and open wounds.

She has been on Vectoryl since July and no improvement with her skin issues yet. Looking forward to hearing about your next appt.

Best of Luck!

Laura

BrittanyandJJ
01-09-2017, 05:30 PM
Hello All!
Updating on JJ. Clinically he is doing okay I think. His appetite is less ravenous and his thirst has calmed as well, in fact I find myself putting water in his food to make sure he is getting enough. His bladder is no longer causing him trouble. His energy level is up and he seems overall pretty happy although sometimes he squints like he has a bit of pain. His skin hurts I think as the CC is still prominent on most of his head and down his back legs. He is however sprouting new hair in places and the eruptions are not bloody like they were. The CC seems less red and angry with the antibiotics and soaking in the antibacterial bathe weekly. I have not noticed any NEW eruptions in the past 2 weeks, so yay for that. To further address the CC JJ has a dermatology appointment upcoming on the 12 of January and per Dr. request we have stopped both the baths and oral antibiotics for the week.

Just received results of JJ's "30 day on Trilostaine" ACTH Stimulation test. I will post below. The specialist I talked to says he doesn't usually do the full blood panel and electrolyte test until the 90 day mark. Any thoughts on whether I should wait until then or go ahead and run the blood panel/ electrolytes before then? I will post the 10 day test results and the most recent because the more recent test shows a higher "post" level than the 10 day test. Is this normal?

10 day ACTH test results
Pre 4.3 range 0.0- 10.0 ug/dL
Post 8.6 range 8.0-22.0 ug/dL

30 day ACTH test results
Pre 3.4 range 0.0-10.0 ug/dL
Post 11.6 range 8.0-22.0 ug/dL

It appears to me that the CC is starting to clear. I know Harley PomMom you mentioned that for this to happen JJ's cortisol need to be at 5 ug/dL or lower. Is this "Pre" value Im shooting for?

Should I be concerned that JJs "Post" levels increased since his last test?

Thank you all for your support and I look forward to your responses.

Much Love,
Brittany and JJ

BrittanyandJJ
01-09-2017, 05:43 PM
Also, one more quick question. Should I be concerned about the Trilostaine hurting JJs liver? Before the Cushings diagnosis I knew about JJ's elevated liver enzymes. We did an ultrasound of the liver and found that he has a course liver... Im not sure how serious this is or if the Trilostaine may hasten any decline of his little organ?

BrittanyandJJ
01-09-2017, 06:00 PM
Okay, one more question. Cruising other people's threads really gets your mind going. :-o

If JJs skin is showing this much trouble from the CC is it possible he also has CC internally? If so what part of his body most likely affected? Is it possible that internal CC can be causing him pain or worse, some sort of internal function issues? EEK!

DoxieMama
01-09-2017, 06:28 PM
Hi - I just wanted to share a link to Dechra's website with a page that might help answer some of your questions, especially regards to the desired test results.

http://www.dechra-us.com/therapy-areas/companion-animal/endocrinology/canine-hyperadrenocorticism/treating-cushings

On that page is a link to their treatment and monitoring flowchart, which I am going to link below as well:

http://www.dechra-us.com/Admin/Public/DWSDownload.aspx?File=%2fFiles%2fFiles%2fSupportMa terialDownloads%2fus%2f01TB-VET50030-0615.pdf

Hope this helps!

Shana

molly muffin
01-09-2017, 11:12 PM
It is the post number that usually should be under 5ug to help with clearing up cc. So, yes it can be a concern that the post is going up and could mean that that it is possible to have new calcium deposits forming under the skin.

Can they get calcification internally. yes it is possible, and they would probably need to do like an ultrasound to determine that. I think it will show up on an ultrasound. You look for the areas internally that are closest to the cc on the outside I think.
Not every dog though gets internal calcification. Only some and not all dogs with cc. I don't know that it is a high risk, but is something to discuss with an IMS I would think to get their take on the risks for that.

BrittanyandJJ
01-10-2017, 07:16 PM
Hi All!
Update on JJ. Spoke to my specialist and he has increased JJs trilostaine dose from 30ml per day to 40ml per day (20ml 2x daily). Hoping this will put JJs post in the "controlled" range of 2-7 ug/dL.

I have a question and it may be silly but tossing it out there. During the ACTH test does it matter what JJ does during that one hour between blood draws? The 10 day test I went and got lunch so he rested and then the 30 day test I took him on a walk longer than any of the walks he has been on in the past few months. Would this have any effect on his levels?

labblab
01-10-2017, 07:48 PM
Hmmmm....yes, I would really worry that going on a long walk could indeed elevate ACTH results. I don't know for certain that it affected JJ's post-number, but we've always been told that stress of any sort can heighten cortisol production and I would think that physical exertion would constitute physiological stress. I think you would want to keep a dog as calm and physiologically relaxed as possible during the course of an ACTH test. I would let your vet know about JJ's long walk during this past test and in the future, I'd just let him rest during that hour.

Marianne

Joan2517
01-10-2017, 09:02 PM
I would sit with Lena in the waiting room in between the blood draws. I would read or talk to others there and she would sit and look out the window or nap. If she needed to go out and pee, we took a short walk. It was less stressful on both of us that way. The first time I left her, they never walked her and she was wet and very unhappy when I picked her up.

BrittanyandJJ
01-11-2017, 12:56 AM
Hello there. Thank you both for your input. :-)

I spoke with the specialist who is reviewing all of JJs tests as they are done and adjusting (or not) his Trilostaine doses. When I told him about JJs walk between blood draws he told me that "For testing a dog for treatment effectiveness, it doesn’t alter the results in a meaningful way so no problem." I am hoping he knows his stuff because JJ's dose has been increased based on those test results. I will post JJs clinical progress (or otherwise) after I begin the new dosing. I am hesitant to change his dose because clinically I think he is doing well- his CC is even clearing up which doesn't normally happen unless the post ACTH is on the lower end. This made me worry further that the walking had altered his test results... my experience thus far has made me skeptical when vets tell me things, but this specialist has experience with Cushings. I am going to continue with the current dose but when JJs new batch of Trilostaine (40 mg suspension)comes in I will begin the new regimen.

For future tests I will let JJ rest during the hour between blood draws to avoid this possible skew in test results...

Still not confident I should switch doses based on this test, but I can always decrease dose again if need be. Right?

Also, I asked if I should retest at 10 days after the change and was told that usually, yes but that if JJ is clinically doing okay I can wait until the 30 day mark. Feedback?

Thank you all for your feedback as I am overwhelmed by all this and do not want to make any decisions unless they are the best for JJ. Although the tests are really expensive here (almost $300 a pop) if waiting could cause problems I will go ahead and test.

Cushings aside JJ has a dermatology appointment on Thursday to address the CC and best course of treatment when it is acting up to avoid infections... since it is looking much better than it was I am wondering if this appointment is necessary. However, since I have the appointment and the information I may learn can possibly benefit us down the road I will keep the appointment and post anything I learn.

Much Love,
Brittany and JJ

Joan2517
01-11-2017, 08:50 AM
Testing is supposed to be done after any increase in the medication. Since you really aren't sure if the walk skewed the test results last time, I would insist on testing after the increase if you do indeed increase to the higher dose.

BrittanyandJJ
01-13-2017, 07:04 PM
Hi There!
Just updating after JJs latest appointment. JJ visited a dermatologist yesterday for his CC. I was told it doesn't look infected and that it should clear up after we get his cortisol under control. They pulled some hair samples to test for mites and found evidence of adult demodex mites but no larva. These mites are the cause of the bleeding wounds JJ was experiencing last month! Started a monthly oral treatment for mites/fleas/ticks called Simpirica. Also, received Douxo drops to apply topically to the CC outbreaks. This is supposed to relieve inflammation.

The dermatologist (who has treated many dogs with CC due to Cushings) reassured me that the walk JJ went on during the course of his last ACTH test would not skew the results as I had worried and that Upping his Trilostaine dose is the right move. So, started JJ on his new dose last night.

We will post progress in 10 days. :-)

lulusmom
01-13-2017, 09:16 PM
We'll be looking forward to your next update.

Crazy Daisy
01-13-2017, 10:52 PM
So glad you're seeing some progress! What are Douxo drops?

molly muffin
01-13-2017, 11:38 PM
Douxo drops seems to be for the skin. (looking it up on google) and is used in addition to a medicated treatment I think.

Definitely looking forward to the update on hos JJ does on the 40ml

BrittanyandJJ
01-14-2017, 03:16 AM
Yes, Douxo drops are applied once a day topically to soften the skin around the CC deposits and reduce inflammation. I have applied it twice so far (last night and today) and already see less redness around the CC. There are a couple spots of CC on JJs head that may have turned to bone already and thus will never go away however, according to the dermatologist most of it should clear up with Cushings treatment.

JJ little hairs are popping up and growing back around the spots where he was shaved in November for the skin biopsy. Yay.

Fingers crossed this new dose takes effect. The dermatologist said it can be very hard to get a dog's CC under control in a case of what he called "live Cushings" when a tumor is causing the Cushings. I believe JJs Cushings is pituitary as he has had ultrasounds of his abdomen. Dermatologist seemed satisfied and said that the Trilostaine should theoretically be effective in our case...seemed more worried about adrenal tumor than pituitary for some reason.

Also, upon the dermatologist review of medications that JJ has been prescribed over the past few years I learned that I had been given a STEROID spray with no caution that is was a steroid. Always important to do a quick look up on what vets are prescribing! I was given this spray when JJs nose was cracking and super duper dry for reasons unknown. The vet shrugged and gave me the spray for really lack of knowing what else to do. That same day I expressed concern about JJs ear possibly being infected. The guy said it looked fine however 2 days later on a Sunday I was making an emergency appointment with a local house call vet because JJs ear was so infected he was yelping if I even looked toward it! My point of this rant is to be wary of what vets are sending home with you and READ up on them. The dermatologist told me he sees this more often than he should... health problems caused by topical sprays sent home to unknowing owners that keep using them because they do not know they are causing more harm. I do not have the immediate name of this steroid spray, but will post when I look at the bottle. The dermatologist says he has see Cushings develop in canines as a result of this spray.

labblab
01-14-2017, 08:08 AM
Hey Brittany, I'm copying the same question I posted to you over on Erin and Daisy's thread. I'm hoping you'll see it in one place or the other. ;)


Hey Brittany, I believe Douxo is just the name of the manufacturer -- can you tell us exactly what else is on the label of the topical? Douxo makes lots and lots of different products, including a wonderful chlorhexadine shampoo that I use on my nonCushpup who has suffered from recurrent staph infections on her skin. If the topical is helping JJ's lesions, we'd really like to know exactly which Douxo product it is. Thanks so much!

Marianne

BrittanyandJJ
01-14-2017, 01:38 PM
Ah, yes! Sorry I did not notice that- I copied what was written on my clinical report. :-)

It is Seborrhea Spot- On
http://www.douxo.us/documents/DOUXO-SEBORRHOEA-SPOT-ON.pdf

molly muffin
01-18-2017, 06:31 PM
It's been a couple days now are you seeing progress in JJ's condition? The sores, etc?

BrittanyandJJ
01-19-2017, 12:55 AM
Hi Sharlene!
JJs skin is doing okay. I haven't seen much change either direction, so thats better than it worsening. I am washing his head every day with medicated shampoo because a vet friend of the family told me it looked like it could have a secondary infection. If it doesn't clear he will be on another round of antibiotics. It doesn't look terribly infected to me.
He has been on the new Trilostaine dose now for 6 days and is handling it well. I am going to push his ACTH stimulation test to the 30 day mark as all 3 vets I'm working with told me this would be okay if he is doing well clinically.
If his results at the 30 day mark are stable and there is no dose change do I schedule his "90 day test" at the 90 mark of his very first day on Trilostaine or the 90 day mark of his new dose?

labblab
01-19-2017, 07:27 AM
Hi Brittany, if it were me and there is no additional dosing change at the next test, I'd schedule again for three months after beginning the new dose. At that point, if all is well, I'd count the 90 days from test-to-test. I'm so glad to hear that JJ is doing well so far.

Marianne

molly muffin
01-19-2017, 05:37 PM
You can also you as antibiotic spray on any areas to help keep them from getting infected. I do hope everything starts clearing up soon! Can't wait to see the next number!

BrittanyandJJ
02-14-2017, 02:55 AM
Hello all!
Just a note to update on my little guy. His skin is clearing up slowly and hair is growing back. He has had no new CC outbreaks and the previous ones are softening and healing slowly. JJ had his "30 day" ACTH stimulation test today to mark how he is doing since being switched to 40mg of Trilostaine. I also had them take blood to run a blood panel and check electrolytes. I will update once I have the results from the blood test!

Hope all is well with all of you and your little ones.

Much Love,
Brittany and JJ

Squirt's Mom
02-14-2017, 10:30 AM
That sounds great! Clearing skin is always a wonderful thing to hear with our CC babies so YAY!! Good job, Mom!! :cool::cool::cool:

Joan2517
02-14-2017, 10:49 AM
Wonderful news~

BrittanyandJJ
02-22-2017, 02:06 AM
Hi there! Just an update on JJs latest ACTH stimulation test and blood panel. Good news! His specialist say all the values look good and t continue on with the current dosage. His values for his blood panel are mostly ALL NORMAL! YAAAY! First test in 2 years with normal liver values! YAY! I will post the few abnormalities, but the vet doesn't seem concerned about them. Next blood work will not be for another 3 months.

ACTH Stimulation
Pre: 1.2 ug/dL ( a bit low, but vet doesn't seem concerned) Any thoughts?
Post: 3.7 ug/dL

Abnormal results in blood panel
Lipase 921 Reference 138- 755 U/L high
Chloride 104 Reference 108-119 mmol/L low
Na/K ratio 27 Reference 28-37 Low
Platelet 587 Reference 143- 448 High


Thank you all so much for your support. If I had not found this forum I would have had no idea how to proceed with treatment or how to find a vet knowledgeable enough about JJs 2 conditions to guide me through the process. We are so grateful for you all. I don't know where we would be with treatment now if we had not had the guidance of this forum. Thank you thank you thank you.

Hugs
Brittany and JJ

DoxieMama
02-22-2017, 07:05 AM
Those ACTH results are fantastic! The pre number isn't as important as the post number, though we have definitely seen some lower than JJ's. The post number is perfect!

I would be a little concerned about some of those abnormal results, particularly the Na/K ratio being low. I must admit, my concern is likely due to my own pup's issues and will defer to others with more experience.

How is JJ doing clinically?

labblab
02-22-2017, 09:01 AM
Thanks so much for this update, and I agree with Shana -- those ACTH results are great. :)

I think that, overall, those remaining lab abnormalities are probably not a big deal, just as your vet says. For the most part, I believe they can be explained by the lingering effects of Cushing's. The one that would likely bear the most attention is the ratio of sodium to potassium (Na/K), because in addition to lowering cortisol, trilostane also can lower aldosterone which is the hormone that controls the balance of those two electrolytes. Right now, the balance is just slightly out of range so it is likely OK. However, you don't want that imbalance to worsen.

In looking back over past lab results, do you see a trend in that ratio (or in the individual readings for Na and K)? As long as it stays pretty much constant, it is probably fine where it is, especially since it sounds from your earlier report as though JJ is behaviorally doing well. But if he needs to return to the vet for any reason within the next three months, you might ask that a simple blood chemistry panel be run at that time, just to keep an eye on those values.

Marianne

BrittanyandJJ
02-22-2017, 01:45 PM
Hi there. Thank you for your input. I will keep an eye on JJs Na/K ratio. Looking at his past blood work I see that value was low before he started on the Trilostaine as well. In November it was at 25 and now it is at 27- moving slightly closer to range. I will be sure to run a panel the next time he is in for testing to keep an eye on it.

Clinically JJ is doing well. He is a much happier pooch than he has been for the last couple years. His fur is growing back and he enjoys walking again! He prefers short walks however he now leaves the driveway on his own four legs. Previously I had to carry him away from our starting point to the half way mark of our walk and then put him down... he would only walk TOWARD the car or house. Now he is leading the way again- happy to be out. He is no longer thirsting or starving to death and his little pot belly is lessening everyday. While he is still over weight we are working on this issue with his new found appreciation for walking again. The CC is clearing up however the skin all down his back is still hard and callused. It doesn't appear to bother him but I am wondering if it will ever return to normal or if he will just have hard skin down his back for the duration? He has a sensitive spot somewhere that causes hm to yelp when I go to move him sometimes... I was originally worried it was an internal issue but upon lots of "pressure here, pressure there" I have concluded that it is probably soreness from over doing it sometimes. No sign of extreme distress and only occasional flare ups.

Thank you for your interest. We will keep you posted on any testing in the future. :-)

molly muffin
02-22-2017, 11:00 PM
This is all such good news. It's great that JJ's skin is clearing up and hair growing back and yay for a good stim test!

BrittanyandJJ
05-05-2017, 05:04 PM
Hi all,
Just an update on JJ. His thirst has increased a bit again as well as hunger. I had an ACTH stimulation test done along with blood panel to make sure his Cushings is not getting out of control. The stem test came back within range, although a bit higher than previous test. The more worrisome symptom I am noticing is the amount JJ is urinating at one time. Huge puddles again and yesterday he had a little leakage on bed again. This has not happened since his numbers got down into range. Any suggestions? I am posting his latest results below.

April 2017
Pre 2.4 ug/dL Post 4.3 ug/dL

In February his values were
Pre 3.4 ug/dL Post 3.7 ug/dL

Also latest blood panel abnormalities along with Februaries values (any input appreciated)

MCHC 41.0 (high) range 32.6- 39.2 g/dL Feb value 37.9 Jul 2016 37.4
Platelet 638 (high) range 143- 448 K/uL Feb Value 587 Jul 2016 597
Creatine Kinase 232 (high) range 10- 200 U/L Feb value 161 Jul 2016 155


Thank you all for your support JJs skin is still hard with Calcium but no new outbreaks and we are still applying drops to soften deposits. My most worrisome issue is his little bladder. Any insight? Also, his values, while still in range seem to be rising again. Ack!

Harley PoMMom
05-06-2017, 10:28 AM
Regarding the increased thirst/urination, has Jake's urine been cultured to check for an UTI?

If an UTI has been ruled out than it could be that his Trilostane dosage may need to be increased, is he still on the 40 mg dose?

Lori

molly muffin
05-08-2017, 10:27 PM
yes I'd want to rule out a UTI, with a culture if his urine is dilute.
If there is a UTI, that could also cause the cortisol levels to go up a bit.

BrittanyandJJ
09-21-2017, 02:24 PM
HI Harley PoMMom and molly muffin. I hope you both are doing well. Thank you so much for your responses. JJ has been doing quite well aside from bladder infections every couple months. My vet says this could mean he has an underlying infection in his prostate and has recommended I have him neutered to possibly remedy this. I do not want to do this because it most likely will cause weight gain that is hard to get rid of and JJ is overnight as it is. My question is do you think these infections could be caused by his Cushings. Also, more pressing is that I just got his latest ACTH response test back and his levels are up again. Shit. I am wondering if you two think I should test for another bladder infection before increasing his dose (under doctors instruction of course) or if it would not cause such a significant increase if it was just bladder related? I will list his most current few results... His goal is a post of 5 or below to keep the CC under control. EEK!

4/15/17 Pre: 2.4 Post: 4.3

7/19/17 Pre: 1.7 Post: 4.0

9/20/17 Pre: 3.1 Post:6.6

What can cause this increase? Does this mean I am losing control of the disease? Worried about my boy. The only clinical signs so far Ive noted is his hunger has increased.

Thank you guys for your thoughts in advance. Life savers.

DoxieMama
09-22-2017, 08:42 AM
I'm no expert, but it could be from a bladder infection since he seems to be prone to them. It could also mean that he needs an increase in his dosage ... that is not uncommon.

molly muffin
09-22-2017, 09:42 PM
Yep, my first suspect is another bladder infection. He's having them so often that it makes me wonder if one as vet suggest there is an underlying infection somewhere else but also if perhaps it isn't being fully eradicated and needs a longer antibiotic regime. We've had dogs that have been on antibiotics for over a month or so to get rid of persistent infections

BrittanyandJJ
06-23-2018, 10:16 PM
Hi everyone!
I have a question. Has anyone noticed a correlation between stressors (good or bad) and an increase in symptoms? I go back and forth each week from where I live and work during the week to where I play and live on the weekends. I am skipping my weekend this week because I think maybe the excitement of going causes JJ's symptoms to act up. He has had a couple med increases in the last 6 months but has been stable for a couple months. I notice this week though a rise in thirst and hunger. I am wondering if I should avoid too much excitement (we went fishing last week and he LOVED it but was WAY excited). Do you think this excitement could cause a flux in how well he is stabilized or should I let him get so excited? He loves going on our weekends and was hoping to go today... I am on the dance about taking him or skipping our weekend... we have to take a ferry and we stay on my boat... I do not want to continue taking him if it may be what is causing his fluctuation toward worsening symptoms, but I also don't want to restrict him from fun if this is NOT what is causing a flux. Any thoughts?

Harley PoMMom
06-24-2018, 05:08 AM
Were ACTH stimulation tests performed after every dosage increase? And could you post those results? I do believe that stress can make the cortisol rise but it should eventually normalize. If this were me, I wouldn't restrict his fun time with you especially when he really loves it. You could ask the vet if melatonin will help as it does have a calming effect.

Lori

Squirt's Mom
06-25-2018, 10:11 AM
What you are seeing - signs that require an increase in dosage - is common with Vetoryl. I doubt the weekend activities are causing an increase in cortisol. Nor do I think they should be stopped or moderated at all. If JJ enjoys those trips, and it sounds like he loves them, I would continue doing just that for as long as he was able and found joy in them. It is my opinion that continuing as you have been will extend his life by keeping him active and stimulated....and happy. ;)

But it would really help if we could see those ACTH results Lori mentioned. :)

BrittanyandJJ
11-13-2018, 01:36 AM
Hi everyone!
Just checking in with you guys because this forum really saved JJ and me a couple years ago and I thank you all for that!

JJ is doing well right now. His Cushings is in control and his CC has not flared up. Over the past 2 years I have had to adjust his medication a few times- last winter was a little rough with a couple dose increases and talk of a possible ultrasound being done if this continued to make sure he had not developed an adrenal tumor. JJ's dermatologist (who works with a lot of dogs with CC due to Cushings) explained to me that this can sometimes happen and that if JJ continued to need more trilostaine increases I should definitely get the ultrasound. Since then I watch JJ even more closely and put energy out for perfect ACTH tests! JJ is super sensitive and begins showing symptoms if his post number rises above 5. I learned (from this thread, in fact) that for dogs with CC keeping the post below 5 is ideal for controlling the CC anyway. I have found that keeping his post below 5 is best overall for JJ overall, for all his symptoms. I also work hard to keep him from necessary stress because I think too much stress can give him a flare up... either that or the stress I feel worrying about it makes me extra paranoid.

Also, I was reading an interesting article on dogs, their humans, and cortisol. An interesting tidbit I read is that if a dogs person's cortisol rises, there was a positive correlation in their canines cortisol... so basically our stress is felt, to some degree, by our dogs. This has caused me to try and maintain my own stress levels around JJ (I have anxiety issues) and I DO believe that me being in a good place helps JJ's stress levels- and consequently his cortisol levels. Anyone think this has merit?

I am getting ready to go south for the holidays (my work takes me south for the winter). I am debating about whether or not to put JJ on a plane (we usually fly, it is a long drive- he flys in the cabin with me and last year it okay except for one flight when JJ got really hot and stressed out- normally he does well). I was planning to drive originally but feel like 3 days in the car and me stressing out may be worse than one day going through airports and 3 hours on a plane? Last winter we were going through dose changes and I was trying to see if these correlated with air travel (We flew 6 times last year over a 5 month period). This year I will not go back and forth- just down and back one time. Any thoughts on whether the fairly high stress of 1 day of travel will have any effect longterm on JJ's Cushings Control or if his cortisol will most likely return to normal after we land and I get him into a routine again down south? Either way, I am fearful the change in pace and location is going to be rough on JJ's cortisol- but initially do you think flying or driving would be the best choice? I want to make this as easy on JJ as possible. He does know the people and houses down south- so he will be comfortable once we get there, just really excited and surrounded by a lot more action than up north.

Thank you all so very much. This forum made a HUGE difference in JJ and my life when we found it and we just want to express our gratitude for you all!

Oh, Jj is next due for an ACTH test at the end of December and we will keep you posted on how he is doing!

labblab
11-13-2018, 08:56 AM
Hi Brittany, and thanks so much for this great update on JJ! We surely appreciate your kind words so very much. But we also know what a huge role your own loving care has played in his treatment success. So lets give pats on the back all the way around ;-)))))))).

As far as your trip south, I would honestly take your own stress level very much into consideration, too. If making a one-day trip by air reduces the number of hours of anxiety involved for you both, then that’s the route I’d go. Either way, a few hours or days of added stress/excitement shouldn’t result in any permanent harm for JJ. His cortisol level may indeed temporarily elevate, but once everything else settles down, the cortisol should quickly follow. So I’d pick the travel option that is easier for you, overall. And I think you’re right — whichever option keeps you the calmest may also keep him calmer, as well.

Thanks again, so much, for this update. And please do keep checking in whenever you have the chance. Sending my warmest wishes to you both.

Marianne

Squirt's Mom
11-13-2018, 10:16 AM
Hi Brittany!

Good to hear from you and JJ again! It is especially good to hear he is doing well but with you as his mom I would have expected nothing less. Like Marianne said, your love has played as much a role in his well-being as anything else ever could.

I agree with her assessment about the travel plans as well - which ever approach will be the least stressful for you both is the way I would choose. JJ may experience a bit of stress at first with the trip and new surroundings but remember - THE most important factor in calming him is you and he will have you by his side no matter where he is staying or how he got there. ;)

Hugs,
Leslie