Advice?

[cheriw1]

My dachshund Charlie was diagnosed with Cushing’s about 6 months ago. He seems to be getting worse. We kept raising his dosage and he currently takes Vetoryl 40 mg a day. I have not seen any improvement in him. In addition to his symptoms of bad skin, pot belly, and excessive drinking he has become very lethargic, snores a lot, licks the floor and has difficulty getting up the stairs.
Here are all his results:
Jan. 29: cortisol baseline: 155, four hour post dex: 178, eight hour post dex: 158
Feb. 24: baseline: 154, post ACTH: 648
Mar. 12: baseline: 82, post ACTH: 516
Mar. 31: baseline: 50, post ACTH: 384
May 10: baseline: 119, post ACTH: 334
The vet wants to increase him to 60 mg a day but I fear that is too much. Any advice or suggestions would be greatly appreciated. I fear I am losing my best buddy.

[Jed's Mom]

Hello to you and Charlie

I am not an expert like the other amazing ladies on this site so I am going to let them ask you all of the questions but I just wanted to let you know that you have come to the right place. I think the majority of us have been where you are right now. This site and its wonderful support will help get you though the rough times and celebrate the good ones to come. My dog Jed did not really have much luck on the meds either but they do work for most given there are no underlying conditions. I would think in 6 months you should be starting to see a change for the better in your Charlie. Again, I will let the resident experts ask all of the right questions but I will be here following Charlie's story and give insight/support when I can.

xoxo
Lisa and Jed

[Harley PoMMom]

Hi and welcome to you and Charlie!

I'm sure sorry for the reasons that brought you here but glad that you found us as we will help in any way we can.

We love details, so if you would tell us more about Charlie it really help us to provide you with better feedback, so that means we will be asking a lot of questions, here are some of mine. :eek:

How much does Charlie weigh? Can you get your hands on copies of all testing that was done by your vet and post the results here. With respect to the blood chemistry & complete blood count (CBC), we need only see the highs and lows, and please include the normal reference ranges. Additionally what diagnostic tests were performed and can you post those results too? What was going on with your boy that prompted you to take Charlie to the vet and what prompted your vet to test for Cushing's? Did your vet tell you which form of Cushing's Charlie has? There are other conditions that have overlapping symptoms with Cushing's, such as hypothyroidism and diabetes. Did your vet rule these out? Does your boy have any other underlying diseases and if so what are they and what meds is he taking for it? Was an urinalysis done and if so could you post those findings too? Exactly what symptoms is Charlie displaying that are getting worse? Did your vet provide you with instructions to always give the Vetoryl with meal? And are Charlie's ACTH stimulation tests being performed 4-6 hours after his Vetoryl dose?

The goal of therapy is to control those Cushing's symptoms, however sometimes the increased drinking/urinating can take longer to resolve due to medullary washout, which means that some dogs who have had pu/pd for so long can take longer to recover/rebuild the solute that concentrates the urine.

A lot of vets are clueless when it comes to the diagnosis and treatment protocols for Cushing, and some of us learned the hard way that placing blind faith in our vets can carry a heavy price tag for our dogs and that is why we encourage all members to educate themselves. It takes an experienced vet and an educated pet owner to facilitate safe and effective treatment. It is when one or both is missing that dogs get into trouble. On that note I am providing a link to Resource forum which has a wealth of information regarding Cushing's and the treatment protocols: http://www.k9cushings.com/forum/forumdisplay.php?f=10

Looking forward to hearing more about sweet Charlie, and if you have any questions please do not hesitate to ask them.

Hugs, Lori

[molly muffin]

Hello and welcome from me too.

In addition to what Lori asked. I'd ask. Have you had an ultrasound done?

Are the ACTH results in ug or nmol measurement? I'm guessing nmol but what to be sure

Are you doing twice a day dosing or once a day mornings?

[cheriw1]

I will try to answer all your questions.
I posted his results in the original post. Charlie's results are in nmol. The vet did rule out diabetes.
We orgnally took him to the vet because he was getting a pot belly and drinking a lot of water. Can someone please explain to me what his results mean? It looks to me like he was getting better and has regressed.
He has not had an ultrasound. I am not sure how much he currently weighs. We don't own a scale. But he is a mini dachshund.
Can someone also please tell me what the symptoms are later in the disease? He seems to be getting worse.

[labblab]

Hello and welcome from me, too, although I am sorry Charlie is doing so poorly! First off, I have approved your membership so from now on, your replies will be immediately visible as soon as you post them.

Turning to Charlie, based on the results of the monitoring ACTH tests you have posted, I think your vet is doing the right thing by recommending the Vetoryl increase. Charlie's cortisol level has been steadily decreasing with each dosage change, but it is still too high for a dog being treated for Cushing's and it appears as though it was over a month between the last change/tests (end of March to early May). It is entirely possible (it is our hope!) that once his cortisol is indeed lowered into therapeutic range, he will finally get relief from his symptoms.

For the benefit of our U.S. readers, his most recent "post" ACTH result was approx. 12 ug/dl (you divide the nmol/L numbers by 27.59 in order to convert to units of ug/dl).

The first test result you listed is for a diagnostic LDDS test. I can see it is positive for Cushing's, but the way his results turned out, we do not know whether he suffers from Cushing's caused by a tumor on the pituitary gland in his head, or by a tumor on one of the adrenal glands in his abdomen. I mention this because sometimes excessive cortisol levels produced by adrenal tumors can require higher doses of medication to control. This is one reason why an ultrasound might be helpful -- to let you know whether an adrenal tumor is present. An ultrasound can also tell you about other internal abnormalities that might be contributing to his symptoms.

Initial doses of Vetoryl are based on a dog's weight. But from that point onward, dosing adjustments are based solely on the dog's response to the medication. So even though 60 mg. may sound like a lot, apparently Charlie needs a dose at least that high to control his cortisol sufficiently. As you will see from this Vetoryl Product Insert, the desired "post" ACTH goal is 250 nmol/L as long as symptoms are well-controlled at that level, or else as low as 150 nmol/L may be necessary. Charlie's most recent result was still up at 334 nmol/L, so it may still need to be cut in half in order to give him symptom relief.

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

Of course, this all assumes that Charlie truly has Cushing's. The symptoms you describe and the results of his diagnostic blood tests are certainly consistent with the disease. But it is always possible that there may be something else going on that could be contributing to his problem. That is why we ask folks whether there were other abnormalities on basic blood or urine panels. The next time you see your vet, I encourage you to ask for copies of all the testing that has been done on Charlie in conjunction with his diagnosis. Once you get that in hand, it will be very helpful if you post any abnormal values for us to see. In the meantime, I would proceed with the Vetoryl increase if Charlie were mine.

Marianne

[molly muffin]

It does take more with some dogs unfortunately. How much do you usually increase by? Like did you go from 20 to 40mg? Or are you doing smaller in increments? Could you do an increase of 10mg rather than 20? You do want that post number to come down more under 250 at least. But it might be that he is one that has to go down even more to see improvement. Once you see those improvements then you will know he is getting to the right post cortisol.

The idea with treatment is that the symptoms get better not worse and you don't see a progression of the Cushing symptoms then.

[cheriw1]

Thank you all so much for your replies! It is reassuring and nice to have a group to talk to.
Charlie started on 10mg then went to 20mg then 30mg then 40mg and now the vet wants him at 50mg or even 60mg.
I have seen a little bit more of Charlie in him lately. He still wags his tail, follows me around and loves to go outside. His pot belly, licking, heavy snoring and lethargy worries me the most.

Do you think it is a good idea to exercise him? We have two other dachshunds and we use to take all of them to the park quite often. Charlie would always be the one to run ahead and circle the others. Now, sadly he is the one that lags behind.

I think I will stay on the 40mg for a couple more weeks and then get another test done and see if there is any change. If not then I will raise his dosage. Sound good?

[tyry]

Hi to you and Charlie,

While I'm still fairly new to this disease I wanted to let you know that we also have been doing a raise in dosage month after month with our Corgi. We started at the end if January and just last week got our girl to "close enough" that the doctor did not want to raise it any more. She is about 24-25lbs and takes 20mg 2x day. Hang in there, you will get there!

[molly muffin]

That is the plan I have been following. I give it 30 days on a dose and if that doesn't work then raise dosage and start all over.

I do,think that if it is feasible to have an ultrasound I would do so. I say that because it gives you a lot bang for the buck as we say.

I would want a look at his liver, kidney, gall bladder pancrease. I'm just wondering what is making him need such high increases.

Do you have results of other blood work and urinalysis that might shed some light on the issue?

If he is interested in some gentle exercise then I would let him do so. Quality of life is always most important.

[labblab]

Hmmm...if Charlie has already been taking the 40 mg. since the end of March, my personal opinion is that you will be wasting both time and money if you wait for another two weeks and retest on the same dose. Given Charlie's dosing pattern so far, I don't think there is any reason to expect that another two weeks on the same dose will put him into therapeutic range or improve his symptom resolution beyond what you are seeing now. For the the benefit of our U.S. readers, here's a summary of his monitoring tests thus far (and I am also adding what I am guessing is his dosing history, based on what you've written):

1/29: LDDS test consistent with Cushing's

2/24 (after treating with 10 mg.?): 154 nmol, 649 nmol; 5.6 ug/dl, 23.5 ug/dl

3/12 (after 20 mg.?): 82 nmol, 516 nmol; 3.0 ug/dl, 18.7 ug/dl

3/31 (after 30 mg.?): 50 nmol, 384 nmol; 1.8 ug/dl, 14.0 ug/dl

5/10 (after 40 mg.?): 119 nmol, 334 nmol; 4.3 ug/dl, 12.0 ug/dl

After 4 1/2 months of treatment, Charlies is still not within therapeutic range and the last 10 mg. increase only dropped his "post" ACTH result by a bit. It looks as though he had already been on that 40 mg. dose for over a month at the time of testing, so even though it is possible that it could still drop a little more, there is little reason to believe it will fall significantly. Remember, in terms of units of ug/dl, your desired "post" ACTH ceiling is no higher than 9.0 and that is only if all symptoms have resolved. Otherwise the target may be as low as 5.0.

If you don't mind paying for yet another ACTH test prior to increasing the dose, that is certainly your decision. But if it were me, I'd want to save that money and use it for testing after another increase. Charlie is indeed responding to the trilostane, but it looks as though it will take a bigger dose to get his cortisol level down where you need it to be.

Given his dosing/testing pattern thus far, I do see why your vet is feeling bold enough to increase up to 60 mg. Plus, you can buy brandname Vetoryl in a single capsule strength of 60 mg. That may make the dosing cheaper than if you are combining multiple capsules of smaller strength. However, if you prefer going slower and increasing to only 50 mg., you can certainly do that.

Compounded trilostane is also an option for the 50 mg. dose -- you could get a compounded capsule made up in that dose. I have to say, though, that in a situation like this where you have been working so hard to get Charlie's cortisol lowered accurately and consistently, my personal bias would be to try to stick to brandname Vetoryl until you've finally gotten him to the dose that seems to be best for him. I am fearful that compounded products sometimes vary in effectiveness, and I would hesitate to switch at this stage of the game. Once you get him stabilized on a given dose, then you might consider switching to the less expensive compounded alternative. However, that is just my personal opinion.

So if it was me, I'd go ahead and increase either to 50 mg. or 60 mg., and then retest Charlie. By the way, just as a sidebar note to our other readers, Charlie's "pre" ACTH values are a perfect example of the variability that can arise from day-to-day, up and down, with those baseline cortisols. This is why you can't accurately use "pre" values for making decisions re: dosing increases

Marianne

[molly muffin]

Ugh, somehow my brain was thinking he'd only been on this dose for 2 weeks, but Marianne is right, if it hasn't dropped by now, it is likely it won't on this dosage. So, i'd increase and also get the ultrasound.

[cheriw1]

Thank you all so much for the advice! I think I will increase him to 50 mg and ask the vet for an ultrasound. How long do you think we should wait for the next blood test at the 50mg? My fear is that he will overdose which is why I have been hesitant to raise his dosage. He gets his meds in the morning but then my husband I both have to leave for work. The vet gave us prednisone in case he does overdose but if were not home how will we know?
I am a teacher and will be off in another month so I can help him more.

[molly muffin]

I'd retest in 2 weeks after starting him on the 50mg. I think you will notice when the cortisol is dropping.

I noticed things like a big of stiffness in back legs from her luxating patella, her tail wasn't being held up as high, just little things that because you know them so well, you will notice.

You can of course wait till schools out if you feel more comfortable, but that will be soon right. So if you time it to start and have the 2 week test when school is out, then you'll feel more comfortable if you have to do another increase, but lose this time by not doing an increase.

[cheriw1]

Hi, So Charlie has been on the 50 mg for just over 2 weeks and we had him retested. Here is his results:
baseline: 101
Post: 408
I also had his liver tested and his results have doubled since he started the meds.
His liver values, the ALB is normal
the ALT is 427 (was 213 when we started)
is ALP is 1134 (was 570 when we started)

Can you help me understand what these valued mean? I don't think the meds are helping. Vet wants to increase to 60 mg now.

[Harley PoMMom]

There are some important protocols to follow with the Vetoryl: it has to be given with food to be properly absorbed; the ACTH stimulation monitoring tests need to be performed 4-6 hours after the dose of Vetoryl is given, are these being followed?

Regarding the high ALP, 80% or 90% of dogs have a steroid induced isoenzyme of ALP so if one of those dogs has Cushing's, you are gonna see anywhere from a mild to severe increase in ALP. These increases are not because the excess steroids are killing liver cells, it's because the steroids are causing an abnormal accumulation of fat in the liver and it is having to work a bit harder.

Hugs, Lori

[cheriw1]

Yes, those protocols are being followed.

[Squirt's Mom]

Would you mind telling us the protocol your vet is following? It sounds like he wants to increase the dose based on the liver values? If so, that is terribly, terribly wrong and very risky. Also, just for clarity on those ACTH results, would you edit the post to include the little letters that follow those numbers? You will see something like mnol/l, ug/dl, etc following the numbers and that will help us convert to a form we are used to seeing. Thanks!

[labblab]

I believe the vet is wanting to raise the trilo dose because Charlie's monitoring ACTH has actually increased rather than decreased subsequent to the increase to 50 mg. Per earlier testing, Charlie's ACTH results are reported in units of nmol/L, so here is the conversion for the most recent test:

Pre-ACTH: 3.7 ug/dl
Post-ACTH: 14.8 ug/dl

Previous to this, Charlie was last tested at the beginning of May after taking 40 mg. since the end of March, and his result in May was:

Pre-ACTH: 4.3 ug/dl
Post-ACTH: 12.0 ug/dl

So even though the trilo has been increased from 40 mg. to 50 mg., the post-ACTH result has worsened. Unfortunately, Charlie has never been within the desired therapeutic range since starting treatment in January. So I believe this would/could account for the continuing elevation of his liver enzymes, due to the fact that his cortisol remains under-controlled.

I believe he has been taking brandname Vetoryl all this time, right? So that eliminates the possibility of any issues with a compounded product. So the question is, why is he not responding as desired to the Vetoryl? I do understand why your vet wants to increase to 60 mg. now. But if increasing the dose again does not result in a lowered cortisol level at the time of the next testing, you may want to consider shifting Charlie to the other Cushing's medication: Lysodren. Not every dog responds favorably to trilostane (just as some do not do as well on Lysodren), so it is fortunate that the two alternative drugs are available; some dogs just do better with one rather than the other.

Off-hand, I don't remember whether you already know whether Charlie's Cushing's is caused by a pituitary tumor or an adrenal tumor. That is one other possibility, I am thinking -- that if he has an adrenal tumor, the excess cortisol production can sometimes be more unpredictable and difficult to regulate with either drug.

Anyway, I do understand giving the 60 mg. a try. And I surely hope you'll see better results this time around.

Marianne

[cheriw1]

Thank you so much for the advice. It is the brand name he is taking. Never thought about trying a different kind of medication! We don't know what kind of cushings he has. Maybe an ultrasound would help with that?

What do you think about his liver levels? They are really really high. I am afraid he will go in to liver failure before long. Could the Vetoryl be causing this?

Thanks again!

[labblab]

No, I don't think it's the Vetoryl. I think it is the uncontrolled cortisol. Liver elevations of this magnitude are not uncommon among Cushpups -- we have seen even much higher. They do reflect fatty changes in the liver caused by the excessive steroids in the system but they do not necessarily herald future liver failure. The enzymes may never return to entirely normal range, even with successful treatment. But this may never present a serious problem, especially if additional physiological changes can be halted.

Marianne

[molly muffin]

I think it might be worth it to get an ultrasound and see what is going on, if there is a tumor on the adrenal gland, how the liver, kidneys, gall bladder, pancrease look. There has to be a reason the post ACTH number went up.

[cheriw1]

Charlie had a another blood test last week. Here is a summary of all his tests:

Jan. 29: cortisol baseline: 155, four hour post dex: 178, eight hour post dex: 158 Diagnosis of Cushings
Feb. 24 @ 10 mg: baseline: 154, post ACTH: 648
Mar. 12 @ 20 mg: baseline: 82, post ACTH: 516
Mar. 31 @ 30mg: baseline: 50, post ACTH: 384
May 10 @ 40mg: baseline: 119, post ACTH: 334
June 18 @ 50 mg: baseline: 101, Post: 408
July 13 @ 60mg: baseline: 154, post: 472
Normal values: baseline: 28-120, post: 220-550
Can someone please explain what is going on? Is the Vetoryl working or not? What do you suggest as our next step?
He only weighs 24 pounds. He has been having blood in his stool lately as well. Going to see the vet tomorrow but would like to know what you guys think.

[Harley PoMMom]

Blood in the stool is worrisome, is the blood bright red or tarry? Has there been any vomiting episodes? Is he drinking and eating normally? Are any of his Cushing's symptoms controlled?

Hugs, Lori

[Renee]

Blood in the stool could be pancreatitis. Maybe the chronic type, not acute. This could account for continued elevations in his cortisol.

Just a thought.

[cheriw1]

Never thought about pancreatitis! The blood is red and with mucous. I will ask the vet about that tomorrow. I haven't seen any improvement in Charlie's behaviour.
Should we continue with the Vetoryl? What would you do?

[My sweet Ginger]

Or colitis. My pup has colitis and gets this (red and mucousy stools) from time to time. Maybe a course of metronidazole or Tylan powder will take care of it, hopefully.

[Harley PoMMom]

When a dog is feeling or acting unwell the Vetoryl should be stopped, if I were in your shoes I would not give Charlie anymore Vetoryl until the reason for the blood in the stool is known and has discontinued.

Since Charlie is not responding favorably while on Vetoryl treatment, which can happen, I would be inclined to switch to Lysodren, after a 30 day wash-out period, of course;) What does the vet think about Charlie's situation?

Hugs, Lori