Newbie here! About to start meds & have a question.

[Mara242]

Hello,
I have a white Boxer/Pit Bull mixed named Lucky. She is 12 (almost 13 years old), but in great health. The Cushings symptoms came on pretty suddenly (at least it seemed that way). She was prescribed Trilostane in liquid form. 50 mg and she is 55 lbs, so that sounds like a good starting dose from what I've read. I just want to share the results of the low-dose dexamethasone suppression test because I don't understand it. Can you tell me if it looks typical with a cushings dog?
Her symptoms:
Drinking more
Peeing more
Hungrier than usual
Slight "potbelly" appearance
Her coat has thinned out
Her skin underneath her coat has darkened in some areas and feels thinner
Her test results:
She had a urinalysis that showed a little blood and crystals in there. We thought it was a UTI at first so she took 2 weeks of antibiotics.
When she was still peeing frequently, I took her back and we did a blood panel. The only change was one of the liver values. The Alk Phosphatase was 275 (range was 5-131). We then did an ultrasound which showed her adrenal glands to be slightly enlarged. Finally, we did the low dose Dex test. Here were the results:
Pre - 3.6 ug/dL
Post 4 hour - 5.4 ug/dL
Post 8 hour - 3.9 ug/dL
"Low-dose dexamethasone suppression test:Normal: Cortisol level less than 1.4 ug/dL 8 hours post-Dex.
Hyperadrenocorticism: Cortisol level greater than 1.4 ug/dL 8 hours post-Dex.
If the 8 hour post-Dex Cortisol level is greater than 1.4 ug/dL, the following can be used to differentiate pituitary dependent hyperadrenocorticism (PDH) from an adrenal tumor: 1. Cortisol level less than 1.4 ug/dL 4 hours post-dex is consistent with PDH. 2. Cortisol level less than half the baseline level at either 4 or 8 hours post-dex is consistent with PDH."

I can not understand that at all. What does it mean? Maybe I should be asking my vet, but he simply told me it meant she has PDH and should start Trilostane and come back in 2 weeks for more tests. He usually explains everything super thoroughly to me, but he was giving me these particular results over the phone. I was kind of in shock and crying, so I didn't ask a lot of questions. I'm very worried about my girl. This diagnosis scares me as well as the side effects from the medication. I just got the meds in the mail today. I want to start them tomorrow, but I'm worried. I just wanted to see what you all thought of these test results? It's definitely Cushings, right? Don't want to give her these meds unnecessarily...
Thanks for reading this.

[Mara242]

Oh, she had just finished her 2 weeks of Cephalexin about 3 or 4 days prior to taking the low-dose Dex test. Could the antibiotics have affected the results?

[Dixie'sMom]

Hello and welcome to our family! You have come to the right place to get help for your baby. She is very cute. Hopefully we can also put some of your fears to rest. Cushings isn't curable, but it is treatable and there are many dogs who have lived out their normal lifespan and died of age-related illnesses and not Cushing's. My doxie is on trilostane (Vetoryl) and is doing very well as are many dogs on this forum. The danger with treatment lies in the dosage and the possibility of overdose and it appears that your vet has prescribed a good starting dose for her weight.

I am very new myself to being the Mom of a cushpup so I will let the experts read your labs and explain the results. It will not matter if you delay a day or two, or 10 in starting the medicine, so try to relax and get your questions answered so you will feel better about starting the meds. If you feel better and more positive about things, Lucky will too. :)

From what you've written Lucky does appear to have Cushing's symptoms, but with crystals and blood in the urine there could be another issue that raised her cortisol and caused a false positive. On the other hand the ultrasound results with the enlarged adrenals do also suggest Cushing's. But, as I said earlier, this is not a death sentence.

We have all been exactly where you are right now and felt what you're feeling. I promise as you gain more knowledge about this disease, you will begin to feel better and be less afraid. And you don't have to do this alone. We will all help you help Lucky, and make sure she gets the best possible care. So hang on! Help has arrived. The others will be around shortly to welcome you and comment on the vets findings.

[labblab]

Hello and welcome from me, too! From what you have described, for the most part, Lucky's symptoms and test results are indeed consistent with Cushing's. The blood in the urine could be associated with a UTI, and untreated Cushing's dogs are vulnerable to chronic UTIs that are difficult to resolve. The antibiotic should not have affected the LDDS results. The one "wild card" for me is the sudden onset of symptoms. That is atypical of Cushing's which is usually a gradual disease. However, perhaps the symptoms were slowly building but did not become so noticeable until recently when the severity increased?

At any rate, the symptom and labwork profile does correspond to Cushing's. The LDDS was pretty strongly positive since the 8-hour result of 3.9 greatly exceeded the cut-off of 1.4 (meaning a dog without Cushing's would have suppressed the 8-hour cortisol reading to a level below 1.4). The LDDS results do not array themselves in a way that allows you to conclude whether Lucky has pituitary vs. adrenal Cushing's, but the ultrasound image points to pituitary Cushing's because both adrenal glands were enlarged. For a dog with adrenal Cushing's, tumors or growths will be seen on at least one adrenal gland which is typically enlarged far greater than the other gland.

So overall, Lucky's profile is consistent with Cushing's and the starting dose is a reasonable one. If Lucky was my own dog, I would proceed with treatment. Just remember that if she appears "off" at any time after starting the drug, you can temporarily discontinued while things can be checked out.

Marianne

[Mara242]

Thank you for the replies!
I'm thinking, maybe the symptoms didn't come on suddenly, but it just felt that way. I attributed the peeing more often to getting older. Then when she had an accident in the house (the first one since she was a pup!) I knew something was wrong. That's when we did the first urinalysis, which saw some blood. My vet gave me 2 weeks of Cephalexin and then told me to drop off another urine sample when she finished the meds. The next sample showed some crystals in the urine. This led them to doing an ultrasound to look for possible stones or a tumor. The Cushings test came next.
I had been noticing her hair loss and skin changes over the past few months. I thought maybe it was also possibly age-related.
Anyways, I'm nervous about starting the meds.
So you don't think the LDDS results could be a false positive, right? Just worried that what if she was misdiagnosed and then I give her the Trilostane. Probably just being paranoid and in denial...

[addy]

I think denial is very common. Marianne seems to concur with your vet. We will be here to hold your hand.

[Spencersmom]

My Chi has been on Trilo for the most part of this year! One of the Vets where I take my baby recently went to a seminar that discussed Vetoryl and she was really impressed with the medication and the company that manufactured it even more than she had been prior to the seminar!

I'm certainly not as experienced with this disease as so many others, but I hope my little window of exposure can help!

[Mara242]

Thanks all! I gave her the first dose of Trilostane today with her breakfast. I think my hands were shaking while I was pulling the liquid through the syringe. Then of course checking that it was the right amount several times before putting it on her food. She ate it right up. She's been fine all day long, so day 1 was a success!! So far, so good..

[Dixie'sMom]

YAY! Let us know how things are going. And read, read,read up on Cushing's in the resource section. You will feel better when you have more knowledge. Good job Mom!

[addy]

If you get worried or scared about anything,just come here and talk to us ok. Every dog reacts differently, when in doubt withhold the pill.

You will do just fine.

[apollo6]

You are not alone. We are hear to help,guide and support you.
Sonja andAngel Apollo

[Mara242]

Lucky had her second dose of Trilostane today. I've been reading about it and I am just getting more worried. She's been fine so far, but it's still so soon.
What if she went into Addison's crisis and I was at work!? What would happen if I wasn't there to rush her to the vet?
I'm gonna be too scared to leave her home alone.

[Squirt's Mom]

MODERATOR NOTE: I have merged your post about the cortisol going too low while at work into Lucky’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!

[Mara242]

Ohh, ok, thanks!
I have 2 more questions about Trilostane.
1) Does it have to be given at the exact same time every day? Or is there a couple hours of wiggle room?
2) Is it ok to give monthly Sentinal (heartworm preventative) with Trilostane?
Thanks

[molly muffin]

Hello and welcome from me too. :)

Usually you want to give it approximately the same time of day. I don't always give it at the same exact time but I do within an hour usually.

If giving once a day, give it with breakfast as the follow up ACTH tests needs to be done with 4 - 6 hours of dosage, if giving twice a day then with breakfast and dinner could work. As long as there is food with the medication so it is absorbed better.

[labblab]

I am not aware of any problems with the combo of Sentinel and trilostane. I gave my own Cushpup both. ;)

Marianne

[Chief]

Hi there, my 10 yr. old German Shepherd has been on liquid Trilostane for 8 weeks and the results have been amazing. He has went from 120mg per day down to 80mg per day. His symptoms are controlled and he appears to be in complete "remission". I noticed a change in his drinking and peeing almost immediately and it just got better as the days went by. His energy level is through the roof. Hang in there. There is light at the end of the tunnel.

[molly muffin]

Hi, checking in on your and Lucky. How is she doing?

hugs

[Mara242]

Awww, thanks! We're doing good! Today was day 5 on the Trilostane and no problems so far. I also talked to my vet about many of my concerns and I'm feeling a bit better. It's still scary, but my mind is starting to ease a tiny bit. :o)

[Dixie'sMom]

It sounds like Lucky is doing good. Now you have got to relax, Mom... she is going to be fine. :)

[Mara242]

Lucky has been on 50mg of Trilostane for a little over 2 weeks. She had her first ACTH test yesterday. The vet called me with the results today. I don't remember the exact numbers, but I'll get them and post them here. He told me that we should decrease to 40mg a day. I was sure I was going to have to increase the dose because her symptoms don't seem to have decreased. He said it could take a couple more weeks to see some changes. I will go back in another month for a 2nd ACTH. Well, I guess I have less to worry about with a decrease in meds as opposed to an increase! Lucky has shown no negative side effects so far and I'm super thankful for that. :)

[addy]

Please make sure to post the ACTH test results, ok? If the vet is decreasing the dose, the vet must think the numbers are on the low side. We have had some vets misinterpret tests so usually we ask for the tests results.:):):)

If I scan your thread, it looks like on November 30th, was the second day of starting the meds, so this was your first ACTH test, right?

Their cortisol can drop like a ton of bricks in the beginning and can keep dropping those first 30 days.

[Renee]

If you have not seen symptoms resolve, but your vet wants you to decrease ... I would be concerned that he/she does not know the proper range for a cushings pup (as opposed to a regular dog without cushings). Please get those exact numbers and share them here so we can help.

[Mara242]

Ok, here are the numbers from the ACTH test.
Time 1 - Pre
Time 2 - 1 hour
Sample 1 - 1.7 (1.0-5.0 ug/DL)
Sample 2 - 4.8 (8-17 ug/DL)

Can you tell me what that means?
Thanks

[Mara242]

Yes, that was her first ACTH test. She had a low dose Dex test, an ultrasound, urinalysis, and a blood panel to diagnose her. Then we started meds. It's been about 2 1/2 weeks on Trilostane.

[molly muffin]

That is where you want Lucky to be and where most people are trying to get. I think your vets concern is that in 2 weeks you are already controlled range, so you don't want to go down any further.

That is why the vet wants to decrease the dose. I would be inclined to consider reducing a bit since gaining full control in 2 1/2 weeks means that by the time you reach the one month mark, the cortisol will probably be too low. Seems that the symptoms actually have to catch up with the numbers in this case.

Lets see what the others think, but I probably would go down a bit in dose if it was me.

[Renee]

I agree with Sharlene. If the post cortisol has dropped to 4.8 in only 2 weeks, then I would back off a bit, and retest in a few weeks. It could be that the numbers initially drop, then climb back up (my pug did this), but with a post number below 5, with only 2 weeks of treatment, I would back off a bit as well.

As for resolving symptoms - even with perfect control (in range), the symptoms will not resolve overnight. They can take weeks or months to fully clear.

Also - good call on your vet's part! I was all ready to think they didn't know the proper range.. but, surprised me by making a conservative and safe analysis of the numbers.

[labblab]

I agree with Sharlene. ;)

If this was the test result at the end of a month, I'm betting your vet would have been happy to leave things status quo. But as Sharlene says, there is a great likelihood that the cortisol will continue to drop further during the next couple of weeks even if the dose remains unchanged. So it also makes sense to me to back off a little bit for the time being.

Marianne

[Mara242]

Thanks guys! I'm feeling a lot better. I don't really understand the numbers and what they mean, so I'm glad I can get other opinions (besides my vet, of course). :)

[Mara242]

Guess what!? Last night, Lucky slept through the night! No waking me up to pee! It's been a while since that has happened. Also, I'm noticing that she's not frantically eating grass on our walks or obsessively licking the floor for crumbs. I think I'm starting to see results here!! :)

[addy]

Great news, Keep up the good work,

[Squirt's Mom]

Good news! Hope this trend continues!

[Dixie'sMom]

Hey, that is great news! And it sounds like you have a great vet too. You and Lucky are.... well LUCKY! :)

[TotesLove]

Hi Mara. I am sorry about Lucky. I have learned that it's best to start larger dogs out on LOWER doses of Trilostane, such as 1mg of Trilostane per kg of body weight, so since Lucky weighs 55lbs or 25kg, then I would start her out on 25mg of Trilostane per day, since you have the liquid (or 20mg or 30mg if you're doing the capsules, since they come no lower than 10mg each). It is best to give Trilostane TWICE per day, so give her half of the total dose each time (or 12.5mg) and always with a meal. Too many vets out there are not up on the research and do not realize that new studies have shown that the larger the dog is, the less Trilostane the dog needs per kg of body weight. It's always best to take any medicine at the lowest dosage that will do the job. My 14+yr old 45lb (or 20kg) "dogter" has been on 20mg of Trilostane for 18 months now and it has controlled her Cushing's symptoms very well. I know others who have overdosed their pets on the large doses of Trilostane that their vets unwittingly recommended (just as mine tried to argue w/ me in the beginning until the follow-up blood work showed the lower dose was working fine). Thank goodness I had read the research and was up to speed on what was going on in the world of Cushing's at the time! I hope this information helps you.
A great vet specializing in endocrine issues explains a lot on his blog here: http://endocrinevet.blogspot.com/search/label/ACTH%20stimulation%20test

[molly muffin]

Sending holiday greetings to you and Lucky.

[Mara242]

Lucky is doing great on the 40mg so far. I am definitely seeing improvements in her symptoms. :)

[addy]

We love great news, keep us posted!

[Mara242]

New update!! Lucky is doing great and her second ACTH results were even better. Her test results after being on Trilostane for 9 weeks:
Cortisol Sample 1 (Pre) 1.5 (1.0-5.0 ug/dl)
Cortisol Sample 2 (Post) 3.7 (8-17 ug/dl)
Because of these results 9 weeks in, we went down a tiny bit from 40mg to 35mg. (So we've gone from 50mg to 40mg to 35mg)
Her Alk Phosphatase has gone from 275 to 211 (range is 5-131)
Her symptoms are improving as well. :o)

[Harley PoMMom]

So happy that Lucky is doing well!! And although her stim results are perfect according to Dechra, I think going down from 40 mg to 35 mg is a good idea. You're doing a great job!!! Please do keep us updated!

Hugs, Lori

[Squirt's Mom]

Great job! So glad things are looking up!