Newbie Here...with lot's of questions

[Tiberius'mom]

I'm so glad I was informed about this forum. My 6 year old English Bulldog was diagnosed with Cushings a couple of weeks ago. He had the LDDST and his results were:
Pre Dex: 3.8 (Range is 1.0-6.0)
Post 4hr Dex: 1.3
Post 8hr Dex: 2.5

He just had his ACTH yesterday and his pre was 3.8 with a post of 7.1

We were started on Trilostane 30mg twice daily for the first 2 weeks and now his dosage has changed to 40mg twice daily...and that starts tomorrow.

I have been doing so much reading on this and I know bits and pieces but I really need to understand the levels.

I'm glad I have a resource to share stories and learn about what my little fella is going through.

[labblab]

Hello and welcome to you and Tiberius! Before asking you about anything else, I want to warn you that the current recommendation of Dechra (manufacturer of brandname Vetoryl) and also clinicians who are very familiar with the drug is to *NOT* increase the dose until at least the first month of treatment. This is because cortisol levels often continue to drift downward during the first thirty days, even when the dose is left unchanged.

Actually, your dog's cortisol level is already within a range that is deemed to be therapeutic as long as symptoms are resolved. So even at the 30-day mark, you might not want to increase the dose as long as you see significant improvement at that time. But the bottom line is that I would ask your vet to leave the dose unchanged for the time being. Here's published directives to back up that recommendation. Pay special attention to the "Treatment and Monitoring" flowchart near the bottom of the publication.

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

Can you tell us more about the symptoms that led to your boy's testing? And how has he been doing since starting out on his treatment?

Marianne

[Tiberius'mom]

Thank you for the information on dosages. I will have a chat with my vet today before picking up the prescription.

We had just thought he was getting older and showing the signs of aging since 6 years old is getting up there for an English Bulldog...but my first clue that something wasn't right was the excessive consumption of water and the fact that he started urinating in the house. He had been housetrained since he was a puppy so that was definitely a sign that there was something going on. He had 2 TPLO surgeries last year and the second time around, it took a year for his hair to really start to grow back. He has the pot belly and has gained weight, but the odd thing about the weight gain is that I have had to beg him to come and eat sometimes because he would just want to lie there and not move. He just wasn't his normal self.

Since being on the meds, I notice that he has a bit more energy, and I don't have to work very hard to get him to eat....but those are about the only changes I've noticed after 2 weeks of Trilostane. He had developed pyoderma late last year and was on antibiotics, which helped, but never completely got rid of it...and now it's back with a vengeance. I'm told that this will eventually clear up but that it takes quite a while for the body to work with the Trilostane in healing skin issues.

So that's it in a nutshell.

[labblab]

Hmmm...when you mention pyoderma, that makes me wonder whether Tiberius may instead be suffering from a skin condition called "Calcinosis cutis." This condition is associated with elevated steroid levels in the body and can indeed become a serious quality of life issue, sometimes quite rapidly. If so, that could be a reason to lower cortisol levels more quickly and dramatically than might otherwise be recommended for dogs without this issue.

The condition can only be definitively diagnosed via skin biopsy, but take a look at these photos taken by one of our members whose dog has indeed been biopsied. Does this look at all familiar to you?

http://www.k9cushings.com/forum/album.php?albumid=805

Here's some more photos from another member:

http://www.k9cushings.com/forum/album.php?albumid=1038

Marianne

[tank&kat]

"The full effect of this drug may not be seen for approximately 30 days, so the first recheck (ACTH) is mainly to ensure that overdosing has not occurred. The dose should not be increased at the first recheck but should be decreased if serum cortisol concentrations are too low." Canine & Feline Endocrinology 4th edition. Marianne already mentioned this but I wanted to support her statement as it very important in the monitoring stage of treatment with vetoryl.

This is the best place to be to learn all there is to know about Cushing's. A common theme you will hear is that symptoms often mimic the aging process in dogs and usually develop gradually over a long period of time. It took me nearly 9 months before I was able to piece together that my dog had Cushing's. He has been on vetoryl for 14 months so far and is doing well considering his age.

http://bit.ly/2blR5W4

~Kat

[Tiberius'mom]

His skin issues aren't as severe as those pictured. My vet stated that he may need to biopsy them but wants to wait to see how the skin reacts to the meds. His reason for upping the dosage was that he said there was a small spike in his levels with his ACTH test. I need to get copies of those lab results...I only have copies of the initial LDSST and his complete blood and urine results.

As far as the skin issue, the vet doesn't want to start up any antibiotics just yet and said to continue with my current regimen of weekly baths using Chlorhexidine PS + Climbazole shampoo, along with in-between wipes using the Chlorhexidine pads. He has several smaller patches that started out like a pimple or small insect bite that turned into the bald patch, and then one larger area (about 1 1/4" diameter) on the higher end of his back. They were all relatively smooth until a couple of weeks ago when the larger area began to get a little raised around the edge. I see hair growing back in the middle of the bald patch.

He doesn't try to scratch at it or rub around on his back as if it itches...but it looks like it would itch. I have been giving him Benedryl periodically if I think he needs it.

[Budsters Mom]

Hi,
Has he been checked for mites??? Mites can follow this same pattern if not caught and treated early. Pimple or small insect bite - bald patch - larger area. They are microscopic. A severe case can look like dandruff, due to flaking of skin caused by the mites. Mites are bugger to get rid of, but it can be done.

Do you know for sure that you are dealing with CC? Cush dogs can get mites too.


He has several smaller patches that started out like a pimple or small insect bite that turned into the bald patch, and then one larger area (about 1 1/4" diameter) on the higher end of his back

[Tiberius'mom]

He's been checked, not biopsied, and the vet said that it is consistent with Collarettes, which he said is a form of Pyoderma. I asked about mites and he said it definitely wasn't that.

[Tiberius'mom]

Well...Tiberius(aka Ti) has been on Trilostane 40mg (twice a day) for the past week. He was diagnosed 4 weeks ago and was taking 30mg, twice a day, for the first 2 weeks. I can say that the only real change I notice is that he seems to have a bit more energy to play with his sister but I haven't seen a real drop in the amount of water he drinks. His skin issues seem to look a bit worse but the vet said to continue with the medicated shampoo as he wants to avoid any additional antibiotics and wait to see how his skin reacts once the Trilostane starts to regulate things. From what I've read, the skin is one of the last things to get control of. When I pet him or touch the affected areas, his muscles twinge or tighten up...as if it tickles him...so I don't know if it is affecting nerves in his back and sides. His ears are starting to bother him as well. They're clean, but the vet said that his skin is irritated and the inner and outer ears are all skin so it makes sense that those would be irritated too. He has been having soft stools off and on....not actually diarrhea, but soft. Should that be reported to the vet or only if it's truly diarrhea?

[labblab]

Welcome back! When is Ti scheduled for his next monitoring ACTH test? If it is not within the next couple of days, yes, I would go ahead and tell your vet about the softer stools. Since Ti's cortisol level had already dropped to 7.1 after only two weeks on the 30 mg. twice daily, I would be somewhat concerned that the softer stools could be signaling that his cortisol is starting to drop too low on the increased dosage. Your vet may opt to move up the ACTH or else advise you to drop back to the original dosage level again.

Marianne

[Tiberius'mom]

Ti went in for his testing last week and I was told that they only tested for his Cortisol level...which was 3.5. He has been on 40mg of Trilostane, twice a day, for the past 30 days and I see no change in his water consumption, urinating, and he is just as lethargic as he was prior to starting the meds. We've had a few days where he has no interest in food...but then other days when he wakes up hungry. The vet wants to increase his dosage of Trilostane to 60mg (twice a day). I explained that he's not had any change in symptoms that I can notice and then the vet said that maybe he doesn't need to be on meds and most of these symptoms are just old age. I don't mean to second guess the professionals because I certainly don't know much about Cushings, except for what I have been reading lately....but I don't like the way this feels. I don't want to up the dosage and cause more harm than good. He wants to go with the higher dosage and have us come back at the end of November to re-test. Any words of wisdom for me?

[labblab]

When you say that Ti's cortisol level was 3.5, is that just a resting baseline cortisol level, or is that a post-ACTH stimulated level? I am surely hoping he had a full ACTH test, because it really is not safe to increase trilostane dosage based on baseline cortisol levels alone.

Even if the 3.5 is indeed his post-ACTH level, then no, I still do not believe it is safe to increase from a daily total of 80 mg. to 120 mg. A post-ACTH result of 3.5 is perfectly right in the middle of the desired therapeutic range of 1.45 - 5.4 ug/dL. You really do not want to risk driving it even lower, especially since the dosing increase just from 60 mg. daily to 80 mg. daily dropped his cortisol from 7.1 to 3.5.

If the 3.5 is a post-ACTH level, then I think there are two possibilities. First, unfortunately, excessive thirst and urination does not resolve for all Cushpups even after their cortisol is controlled. So Ti may be one of those dogs. Or secondly, there may yet remain another cause or contributor to the excessive thirst/urination (undetected UTI, kidney or liver problems, a condition called Diabetes Insipidus, etc.). But I don't think increasing his trilostane dose is the answer.

First things first, though. Can you clarify what the 3.5 represents? Thanks so much!

Marianne

[Tiberius'mom]

Thanks for the prompt reply. They only tested or resting cortisol. The vet never mentioned when his next ACTH testing would be. He just said to come in around Thanksgiving time to retest the cortisol levels. I asked where he should be and I was told he should be at a 1.

[DoxieMama]

Whoa. I'm sure others will reply as well but ... did they say why they only tested the resting cortisol? That's not an ACTH test, which is what must be done to monitor treatment. Gosh I wish I had time to look up the protocol and provide you a link... Oh! I see Marianne provided that earlier (http://www.dechrace.com/pdfs/vetoryl/VETORYLTechnicalBrochure.pdf).

I would print that out and discuss it with your vet. It sounds to me like they're not familiar with Cushing's treatment and monitoring.

Gotta run but I'll check back in later!

[labblab]

Yikes, that's what I was afraid of -- that it was only a resting cortisol level. :( :(

Because of the expense of the ACTH testing, there has always been a hope that trilostane dosing changes could be based on some other indicator such as resting cortisol alone. There has even been research done to try to test the validity of basing dosing changes on baseline cortisols, but unfortunately it has not panned out thus far. You can have a higher degree of confidence in using baselines to rule out cortisol levels that have dropped too low. And under certain other circumstances, research suggests that baselines may give reasonable assurance that cortisol levels are being effectively controlled (e.g., when all symptoms have resolved and the baseline falls within a particular restricted range of 1.3 - 2.9). But for a dog like Ti who remains symptomatic, you cannot determine optimal dosing increases solely on baselines. With a baseline of 3.5, he may well benefit from an increase. But you need that post-stimulated response to be able to judge by how much.

With this new info, I really do not believe it is safe to increase Ti's dose in the absence of a full ACTH. I am actually quite worried about three things that your vet has recomended: increasing the dose now, waiting until Thanksgiving for a recheck even if an increase was warranted (which again should be an ACTH), and telling you that Ti's resting cortisol level should be at 1.0. In the absence of a full ACTH, a resting cortisol level of 1.0 is too low to be assured that the dog taking trilostane is not facing an Addisonian oversuppression of adrenal hormones.

As Judy has suggested, I would print out that Dechra brochure -- especially the "Treatment and Monitoring" flowchart near the bottom -- and ask your vet why he is not performing ACTH testing as is recommended. I definitely would not increase Ti's dose in the meantime.

Marianne

[Tiberius'mom]

We've been taking Vetoryl for close to 5 months now and I really don't see any real progress in Tiberius. He still drinks water like crazy, has zero energy and literally sleeps 18 to 20 hours per day, has no real interest in food, and his eyes are starting to look like he is staring off into the distance. I don't know if it's his vision that is deteriorating or if he is just zoning out. He has also had a few episodes of urinating on his blankets during the night and we have a dog door that he's used since he was a puppy so I don't know if he just can't get up sometimes or if he was asleep and didn't realize that he was going. I know my kiddo and I can see that he is merely existing right now, which kills me, and I want to make sure that I'm doing the best thing for him. Our vet said that his levels are where they need to be and that he is on the correct dosage of meds (60mg twice daily). We're not scheduled to go back for an ACTH test for another 5 months. I am at the point of stopping his meds and letting him live as he is but I don't know if that is the right thing to do and would welcome any advice anyone would like to offer.

[DoxieMama]

Welcome back! I'm sorry that Tiberius is doing poorly now. Have you had a monitoring ACTH test done and if so, could you share the results of that test with us? It sounds to me like he may need a dosage adjustment, and that ACTH result will determine whether to increase, decrease, or stop altogether. I also hope his electrolytes were tested as well, and would be interested in those results, too. (My dog's cortisol levels from the ACTH test were within the desired range, but his electrolyte levels showed that he needed a different dosage of Trilostane.)

[Tiberius'mom]

He had his ACTH monitoring test performed on 10/28 and that was when I was told that his levels were where they should be but I wasn't given his actual number. I have a call into the vet now to ask a few questions so I will get that number as well and post here. I feel like I get more information from this forum that I do from the vet .

[DoxieMama]

I understand. I felt the same way. But we (combined) have more experience than lots of vets will ever have, so it makes sense. They can be educated, though! :)

Be sure to find out what the blood test results are too. Actual numbers for anything out of range, as well as what the reference range is...

[Tiberius'mom]

So Tiberius has a dog door, always has, and he uses it all the time but lately he's been peeing in the house...randomly...but it's on the "brand new" carpet, sofa, garage...and it just makes no sense because he knows to go outside. Just tonight he got up n the couch and I called him over to me so that I could love on him and as he walked over, he stopped...sniffed...looked at me and peed! I'm at a loss for ideas as to what to do.

[kaibosmom]

Hi. I am going to ask because it doesn't look like anyone else has brought it up but has Ti been tested for diabetes? My dog became diabetic after his Cushing's diagnosis. I would be questioning the vet about that. I remember noticing Kaibo's blood glucose going up when I saw his blood test results and asked well before he showed worse signs of diabetes. Of course, nothing was done until he really had it. Anyway, worth looking into and also testing for a UTI if you haven't recently. Also, if Ti is still having skin issues and you have access to a traditional chinese medicine vet, I would recommend it. Kaibo's skin didn't improve until we started giving him herbs to help support him. In fact, one year after starting his herbs, he finally grew hair back (after over 2 years!!).

Nikki

[labblab]

He had his ACTH monitoring test performed on 10/28 and that was when I was told that his levels were where they should be but I wasn't given his actual number. I have a call into the vet now to ask a few questions so I will get that number as well and post here. I feel like I get more information from this forum that I do from the vet .
We really, really, really need to know what the two actual numbers are from that ACTH test. Unfortunately, it is not uncommon for vets to be ill-informed regarding the proper therapeutic range for dogs taking Vetoryl. I am especially concerned since your vet only performed a resting or baseline cortisol level the last time around. Please, please get those test result numbers (there should be two cortisol levels taken an hour apart).

Marianne

[LaurieS]

I notice you are in Sacramento, which is near where I live. I have had really great luck with UC Davis, they recently diagnosed my dog Charlotte with cushings and I feel much more confident with them than my regular vet. They are also cheaper. I was lucky to get into their cushings study and save some money on diagnosis but overall the tests there seem to be a little less than what my vet charges. I sure hope since you posted last that you have been able to get some answers. This is such a hard disease to deal with since many vets aren't very educated about it. I feel so fortunate to have UC Davis close by so I just wanted to mention it to you.

Laurie

[Crazy Daisy]

I pretty much report any changes to my vet. It never hurts! I'm curious, has his thyroid ever been checked? That can also cause lethargy and similar symptoms with poor coat and pot belly. My girl has iatrogenic cushings and hypothyroid.