Kody, Cocker Spaniel with Cushing's, Trilostane not bringing number down.

[vilya57]

My dog Kody (male, 24 pounds) was diagnosed with Cushing's last November via LDDS (do not have those numbers). We started compounded trilostane in Feb at 11 mg BID. First ACTH post # was 9, second ACTH at 30 days was 11.4. Trilo was increased to 14 mg BID on 10 April. ACTH done on 24 April post # was 8.4. Increased to 17mg BID. Most recent ACTH on 15 June was pre 7.4, post 11.2.
Symptoms are not going away- still pants constantly- PU/PD still increased as well as hunger. Pot belly still present and is now starting to have skin issues (flaky, discolored spots). He also has weak, shaky hind legs, which contributed to the ACL tear.

His other meds include Phenobarbitol- started around 1st of May for Sialadenosis, Amlodipine for high blood pressure and Gabapentin as needed for pain due to torn ACL.
I am frustrated that we are not seeing any improvement in symptoms and the cortisol numbers are not coming down.

SO my question are some dogs resistant to treatment with trilostane? Are there any other reasons why the trilo is not bringing the numbers down? Could it be because it's the compounded version rather than brand Vetoryl? It is from Diamonback, and I know a lot of you use that. My vet has given me the choice of increasing the compounded trilo or trying Vetoryl at 30mg SID. I hate to go to the once a day dosing, but can't afford the cost of buying enough 5mg & 10mg Vetoryl to do twice a day. Should I be considering a switch to Lysodren? I just don't understand why we are having such a hard time bring the numbers down and controlling his symptoms.

It is pituitary dependant Cushing's based on the LDDS test done back in November. I don't have those results though.

Thanks,

Sarah

[Carole Alexander]

Hi Sarah and welcome. I'm sure the administrators will respond with many questions but I just wanted to mention a couple of things. Was pituitary Cushing's confirmed? My IMS wanted to switch my dog Skippy to Lysodren when he didn't respond to Vetoryl after being treated with increasing doses for five months this past year. She said that trilostane and Vetoryl do not work for every Cushing's dog. But, because Skippy was also expressing neurological symptoms, i.e., severe weakness in leg muscles, distancing, lethargy, starring, refusing to walk, pressing his head against hard furniture and tremoring, I decided to secure an MRI instead. Indeed, Skippy has a growing pituitary tumor called a Macro Adenoma. These are usually benign but the mass itself can cause a host of serious life threatening symptoms. Neither Vetoryl or Lysodren are used to treat macro tumors. I am not suggesting that Kody has a macro and switching to Lysodren may be the answer. But, I hope that you will share more about Kody and tell us if he is having neurological symptoms. My best to you and Kody.

[vilya57]

Hi Carole,

Thanks for the welcome! I read your thread earlier today as it was one of the few I found where trilo wasn't bringing the numbers down. Kody is not displaying any neuro symptoms though. Just the normal cushing symptoms of increased drinking/peeing & hunger, constant panting, heat and excercise intolerance, pot belly. His energy level is fine- still wants to play ball constantly (although with the torn ACL he is not supposed to). I just don't know whether I should switch to brand name Vetoryl or keep increasing the compounded trilo. It's so frustrating not seeing any improvement in 4 months of dosing.

[DoxieMama]

Hi Sarah,

Welcome to you and Kody from me, too! I'm sorry I don't have any suggestions for you, though I'm sure the more knowledgeable admins will have some ideas, or at the very least, the pros and cons of the various options available to you.

In the meantime, please feel free to browse the forum - perhaps you will find something helpful in the Helpful Resources (http://k9cushings.com/forum/forumdisplay.php?f=10) section.

I look forward to learning more about your precious boy!

Shana

[vilya57]

Hi Shana,

Thanks! I've been lurking on here and doing a lot of reading since I found it a few months ago. It is amazing the amount of info available! The support is also amazing- it's so hard to go through this and it helps to have people who understand.

[labblab]

Hello, Sarah, and welcome to you and Kody from me, too. If it were me, I do believe I would give the once-daily dosing of Vetoryl a trial run. It is absolutely true that a number of our members use Diamondback's compounded trilostane with success. But no matter who the compounder is, I'm always anxious to see whether a switch to Vetoryl will make a difference for a dog who is having difficulty achieving cortisol control. I am wondering, for instance, if you're currently using a liquid suspension since you are able to make such small adjustments. I, myself, always wonder whether there may be any issues with administering trilo in a liquid form -- whether the active ingredient always remains uniformly dispersed throughout the suspension, for instance (especially as it ages). So if you are using a liquid, I'd be curious to see whether a switch to capsule form makes any difference. Also, we want to make sure you are dosing the trilostane along with a full meal (even on ACTH testing days) in order to insure optimal absorption.

Having had a nonCushpup who needed phenobarbital for seizure control, I also know that phenobarb can induce many of the same symptoms as Cushing's, especially during the first weeks of treatment: excessive thirst/urination/hunger, lethargy, loss of balance that could mimic muscle weakness, etc. Since Kody has only been on the phenobarb since May, I'm wondering whether there may be some overlapping symptoms that are unrelated to Cushing's itself. Also, I just checked and apparently phenobarb does not interfere with ACTH stimulation test results, but it still might be worth asking your vet to check with the lab that processes Kody's test in order to make sure that this is the case (since I know that phenobarb does interfere with dexamethasone suppression testing, for instance).

I confess that I'd not heard of Sialadenosis before -- what an unusual ailment! Does the phenobarb seem to be helping with that (and out of curiosity, how was it diagnosed?)

Last but not least, how recent is the ACL tear? Pain alone can elevate cortisol levels, so if Kody is experiencing new or increasing pain it seems possible to me that it may be skewing the ACTH results...

So those are a few of my first thoughts. Once again, welcome, and we look forward to learning much more about your little boy!

Marianne

[vilya57]

Hi Marianne! I feel like I know you already as I've read so many of these threads and your responses!

Kody's trilostane is in capsule form, so no issues with liquid suspension. I am leaning towards going with Vetoryl once a day and will update with results on that. Kody is absolutely getting his meds with a full meal- even on testing days. :)
My vet did warn me about increased/overlapping symptoms when we added the pheno- we were actually hoping that the pheno would help 'calm' him a bit as pheno has a lowering effect (didn't happen)- Kody is high-strung and anxious pretty much all the time. Whether that is all or just in part due to Cushing's- I'm not sure.
Sialadenosis is apparently a very rare thing- he has bilateral swelling of the salivary glands in his neck. we first thought it was swollen lymph nodes and fearing lymph cancer we did a fine needle aspiration- no sign of lymph cells, only salivary. did another aspiration just to make sure there was no error in the first- still no lymph cells- just salivary. The lab suggested sialadnosis which bascially is the salivary galnds are swollen for no reason. Oddly, in the few cases documented, pheno has been shown to reduce the swelling. His glands has been reduced in size since staring the pheno, and we hope to wean him off eventually once the glands are down to a normal size. I will have my vet check about possible interfence with the ACTH test.

His ACL tear happened around 10 April, so somewhat recent, he was first on tramadol for pain, then we switched to gabapentin since newer studies have shown tramadol isn't so great with reducing pain.

His panting has always been the worst of his symptoms- that's actually the reason I took him to the vet back in November and the reason I decided to start him on Trilo in February. He just seems so miserable and I dread summer as he can't tolerate the heat. My house is never warmer than 68 degrees, and he has the cooling mats that do seem to help. I just read on another thread about directing a fan at him, so we'll definitely be trying that.
Thanks so much for the response. I'ver been going through this alone and it gets so overwhelming. I have anxiety issues so it's hard for me to reach out (I'm sure Kody feeds off my anxiety so I try my best to keep that under wraps!) but I'm glad you all are here.

Sarah

[Carole Alexander]

Hi Sarah, I am exceedingly glad that Kody has no neurological symptoms and I was hesitant to even raise the possibility but felt that I should raise it. Kody's failure to respond to the trilostane must be incredibly frustrating for you both. If it were me, I would see an IMS and consider the suggestion that you switch the dosing to once a day. Or find an IMS and switch to Lysodren. I know too well how expensive this all is and finding a treatment that works with the proper dosing can take a very long time. I hope you will keep us posted on Kody's progress. You will get there!

[vilya57]

So we started Vetoryl 30 SID on Monday, and so far has not had any effect on Kody's symptoms, not for better or worse. I know it's only been a couple days, but I am just at a loss. I guess the next step is to increase his dose again... How much should we increase by? We have been doing fairly small increases each time, but I just don't know that it's been enough. I have heard that smaller dogs sometimes need higher doses. Has anyone experienced this??

[Joan2517]

Cortisol can continue to drop for 30 days after an increase, so you should wait until then. You check after 14 days to make sure it doesn't drop too low, but wait the 30 days for any increase.