Compounded Trilostane?

[MugsysMom]

Hello,
I am new to this forum. My dog Mugsy (Brussels Griffon, age 10)was just diagnosed Friday with Cushings. I am a bit overwhelmed #1 by the fact that he has this serious illness and #2 by the cost of treatment and testing. In my research on the web, i find various sites who offer compounded Trilostane in a much wider dosages than the commercial ones which seems to make sense in regulating dosage for a 15 lb. dog amd the cost looks a lot more affordable. I also read that the AVMA does not approve of compounded meds. I would like to hear from thos of you who use these, problems with vets approving the useage.

I saw a different vet in the clinic than the one who originally saw him and the one who gave me the results said, "Oh, you don't HAVE to treat him. It is very expensive for the meds and all the tests. Think about it and give me a call." Why in the world would she suggest I NOT treat my dog??? I am going to call the other vet who seemed a whole lot more sympathetic, etc.

There is so much information on this forum, I hardly know where to start. Thanks for your help:confused.

[Harley PoMMom]

Hi and welcome to you and Mugsy!

Cushing's is one of the hardest diseases to get a confirmed diagnosis. This is because not one test is 100% accurate at diagnosing Cushing's so usually mulitiple tests are performed to verify a Cushing's diagnosis. Usually the major expense is in the diagnostic phase. Since Cushing's is a slow progressing disease one does have time to get a proper diagnosis.

Strong symptoms are a huge part of making the diagnosis, and a Cushing's savvy vet will not initiate any treatment without strong symptoms and a proper diagnosis. What symptoms is Mugsy displaying that led you or your vet to test for Cushing's in the first place? Could you post the results of all test/s that were done on Mugsy. We only need the abnormal results with the reference ranges and units of measurements. If any Cushing tests were done like an ACTH stim test or LDDS test, could you post these results too.

Please know we will help you in any way we can so do not hesitate to ask any questions.

Here is a link to a Thread where members were discussing compounded Trilostane: http://www.k9cushings.com/forum/showthread.php?t=2620&highlight=compounding+trilostane

Love and hugs,
Lori

[jmac]

I saw you posted a question in the thread Dr. Bruyette had been writing in. I was just advised by someone on the forum to contact him with a question I had a couple of days ago. I looked back and he has not been active on the forum since 2009. She did give me his email address too, and he did respond to me.

Here it is: david.bruyette@vcahospitals.com

Good luck to you and your pup!

Julie & Hannah

[addy]

Hi and Welcome from me and my pup Zoe,

Cushings is scary and confusing when you first are faced with it. It gets less scary as time goes on though it can still get confusing. :):)

Our resource section has many articles by some of the top specialists in the field and is a good place to start.

Many of our members use compounded trilostane purchased from Diamondback Pharmacy in AZ. It is reputable. I have not had a problem getting a prescription from my specialist. The cost varies, depending which compounding pharmacy you use. Diagnostic tests can add up because you need to test after 14 days of starting treatment, again at 30 days and then 3 months thereafter unless there is a dose change. Any dose change and the 14 day and 30 days cycle is repeated. Tweaking of doses is sometimes necessary.
In addition to the ACTH test you really should check electrolytes. We have a poll going where you can see what some members have been paying throughout the country.

As Lori has already asked our usual questions, I won't.;);)

Hugs and welcome again,
Addy

[ThreeJacksMom]

Hello and welcome. I just joined here, too, as my little Sassy (10 year old Jack Russell) was diagnosed with Cushing's this week as well.
You will find the most kind and caring people on here and a wealth of information for every question you can think of.
This is the best source of info I have come across and just knowing I am not alone is comforting.
Sending you hugs,
Lauri and Sassy

[Maya]

Welcome! Great site, great people and loads of useful information!:)
Leah and Maya

[Roxee's Dad]

Hi and a belated welcome to you and Mugsy.

Just a few questions to start :o :)

What symptoms does Mugsy have that led to the Cushings testing and diagnosis?

Excessive Water consumption?
Excessive Urination?
Excessive hunger?
Food stealing?
Pot belly looking stomach?
Any hair loss?
Panting?

As has been mentioned, there are many here that use compounded Trilostane. Usually the diagnosis and first few months of treatment are the most expensive. Once the cushings in under control... the cost comes down significantly. Hope to hear more about Mugsy :):)

[MugsysMom]

Thank you to all who have responded to my post ;>)

I first took Mugsy to the vet thinking he might have diabetes because he was drinking so much and had increased urination. He also is panting all the time and the pot-bellied look. I need to get copies of his test results to share those with you.

Mugsy had the low dosage dexamethasone 8 hr test. His first draw in the am was within normal range but the 8 hr test showed the cortisol had increased about 3-fold.

Talked to the vet today and she agreed to my using the compounded Trilostane and starting at 15 mg/day.

[addy]

Hi,

That sounds like a reasonable starting point, 15mgs for a 15 pound pup.

Did you only have the one test done? If you had an blood work done please post any abnormal results along with the normal ranges.

Symptoms are a big part of the diagnosis. It does sound like Mugsy is presenting some of the more common Cushing symptoms.

Did you order your Trilostane?

Hugs,
Addy

[MugsysMom]

Hi Addy,

Haven't ordered the Trilostane yet. I wanted to check out which pharmacies are cheapest. Tomorrow is my day off, so I can make some calls. RxPetDirect has all the prices listed but haven't found other sites that do. I read that most on this forum use Diamondback. Do you use compounded? If so, where do you order it from?

I will post test results when I get a copy.

Thanks for your well wishes!
Ginny

[MugsysMom]

Mugsy and I are having a battle of willfulness. He is very resistant to getting his Capsule in the AM. He knows when I want to give it to him, hides, won't let me catch him and then, when I do, I have to try to give it several times before he will swallow and by that time the capsule is dissolving! I've tried rubbing his throat, blowing on his nose to no effect. Anyone have any advice. He has only been on the trilostane one week.:confused:

[littleone1]

I've had the same problem with Corky, but he's taking other meds. I now put his Trilo and other meds in chcken flavored capsules and mix them in with his food. Are you giving the Trilo with food? It should be given with food. You can try wrapping it in ham, chicken, or turkey. I also coat some of his pills with cream cheese.

Terri

[Squirt's Mom]

Hi Ginny,

There are a couple of things you can try...peanut butter, butter, cream cheese, Am cheese...anything soft enough to form around the capsule. It sometimes helps to give a small bite with no med first, followed immediately by the second bite with the med and maybe followed by a third bite with no med. You can also use Pill Pockets which you can get at PetCo, PetSmart, your vets, and maybe even WalMart, etc. Most pups love these and they are soft enough to form, too. It may also help to use different things each time to keep him from catching on. ;)

Hope this helps!

Hugs,
Leslie and the gang

PS. I merged your newest post about giving pills with Mugsy's original thread. We like to keep all the info about each pup in one thread so it is easier to keep up with the history. If you would like the title of this thread changed, just let a moderator or administrator know! :)

[MugsysMom]

Hi Terri and Leslie,
Thank you for your prompt response and your helpful ideas. I am worried about him biting into the capsule if I use the peanut butter/pill pockets, etc. With a tablet once, I coated it with peanut butter and thought I had succeeded until I found it in another room. One thing I'm going to try tomorrow morning is to put it in a small slice of hot dog that I will put the capsule in. I cut a tiny slit on the edge of the slice and then poked a chop stick in to make a little place for the capsule. I gave him a piece of hot dog tonight and he was chewing it, so I realized it needed to be smaller so he would gulp it down. Am I being overly concerned about him chewing the capsule?

I used to feed Mugsy once a day in the evening when I got home from work, but since his testing next week needs to be 4 hrs after his medicine, I needed to start feeding him a small meal in the morning and then some more at the usual time.

Thank you so much for your help ;>)

Ginny

[MugsysMom]

Terri,
Chicken-flavored capsules? Where do you get those and how do you transfer the med into it?

Thanks,
Ginny

[littleone1]

Hi Ginny,

I originally got them from a friend. You can get them at www.capsuline.com, or call them at their toll free number-866-536-2277. I have the 1 inch, and all I do is to put the Trilo capsule in the chicken flavored capsule.

Terri

[Harley PoMMom]

Another thing you may want to try is pill pockets. Here is a link about them: http://www.greenies.com/en_US/products/dogpillpockets.aspx I found that the chicken flavor worked best.

[MugsysMom]

I do not want to sound morbid here, but I am curious as to what a Cushing's dog actually dies from, i.e., breathing issues, kidney failure? My Mugsy is on Trilostane and doing OK but pot belly has gotten bigger, he is short of breath when going for a short walk and has lost weight from 14 lbs to 12.4 lbs. He is a Brussels Griffon. I would appreciate any input in regards to cause of death.
Thank you and all the best to all the dogs out there with this troubling disease.

[Budsters Mom]

Hello and welcome:)
I am sorry for the reason that brought you here, but so glad you found us. You have come to the right place! There are many K9Cushing's angels standing by to help and stay with you every step of the way. They love details, test results, any information you can get your hands on. The more the better. We will do all we can to help. Others will be popping in to welcome you also. So again welcome to you and sweet little Mugsy.:)

Hugs,
Kathy

[frijole]

I assume your dog has pituitary cushings which is the most common form. Most cush dogs, once you treat the disease and the cortisol is reduced die of something other than cushings. I've been here for over 8 yrs so I've seen alot of dogs die - but it's usually of non related illnesses or old age. My Haley was treated for 4+ years and she died of old age at 16 1/2.

This disease is absolutely now a death sentence. And the 2 yr rule is pure hogwash too. All you have to do is treat the disease and your dog can live a very normal life.

Dogs that aren't treated for cushings might end up with heart disease, diabetes for example but here most members are treating the cushings. Kim

[labblab]

Can you please tell us more about your dog's trilostane treatment history -- what dosage for how long, how much does your dog weigh, what were the most recent monitoring ACTH test results? If your dog is developing these recent problems, it may be the case that the trilostane dose needs to be adjusted.

Marianne

[goldengirl88]

Hi:
Welcome to the group. Could your dog have heart disease? Cushings can cause tracheal disease, which causes difficulty breathing. Some dogs lungs lose elasticity when they get older, and also develop calcium deposits in the lungs. My Tipper is also experiencing breathing problems especially at night when she lays down. I video taped it and am waiting for the Dr. to call me after she has seen it early next week. So if you watch my thread I will post what she says. Good luck. God Bless you both.
Patti

[SoggyDoggy]

This disease is absolutely now a death sentence. And the 2 yr rule is pure hogwash too. All you have to do is treat the disease and your dog can live a very normal life.
Typo alert! Kim meant NOT a death sentence. It is most definitely not a death sentence, and many dogs here lead full and healthy lives when treated and well managed. In fact there is even an agility and obedience champion amongst the ranks here somewhere.

[Harley PoMMom]

Hi Ginny,

I just wanted to let you and everyone else know that I went ahead and merged your recent Thread into Mugsy's original Thread so that it would be easier for us all to go back and read info about sweet Mugsy.

Love and hugs,
Lori

[frijole]

Typo alert! Kim meant NOT a death sentence. .

OMG thank you! That might be the worst typo I ever did. Thanks for catching it. Kim