My Dixie has cushing

[Freida]

Hi My corgis mix rescue Dixie has just been diagnosed with Cushings. She is 12 weighs 63 lbs. and has bad hips. Vet has perscripted Vetoryl for her. The problem is a box of 30 (60 mg at 2 a day)would last her 15 days. The price would be 140.00 a month plus tests. We are on social security and can't afford this. What other options are there? We love her so much. I think we caught her quickly drinking a lot, peeing a lot and very hungry. Her urine is clear. Help.

[lalosmom]

I have just been going through this and no doubt the mods will respond to you. The second forum which is about helpful information has some links to pharmacies like California Pet Pharmacy, Lambert Vet Supply, and Diamondback Pet Pharmacy which is a compounding pharmacy. If your pup can take the regular dose size, you will probably find a better price at CPP or Lambert. I have noticed that a lot of people are shocked at the price of treating Cushings; this is my second Cushings dog but I was still upset to find what my vet quoted me for a one month supply.

[Dixie'sMom]

Hello to you and Dixie! My Dixie has Cushing's too. :) I can smile about it now but not so long ago it terrified me.

You have found a great place to get information and support for you and Dixie. When you get a chance, check out the Resource forum. There is tons of great information there that will help you understand Cushing's better and all that it brings to the party.

There are quite a few of us on here with limited incomes so hopefully we will be able to help you do this in a more cost effective way.

The most important thing that jumped out at me is that for a weight of 63 lbs. your pup should start at ONE 60 MG TABLET PER DAY... not two. Dechra, the maker of Vetoryl, has determined that dogs have less adverse effects when they are begun on a dose close to 1mg per lb of body weight. They have not updated their product inserts so your vet may be unaware of this information. Here is the link to that information. You may want to send it to your vet or print it out and take it with you to your next visit.

http://www.vetsonline.com/news/product-news/140722-new-lower-starting-dose-for-vetoryl.html

Please do not start your baby on more than the 60 mg. She could become very, very ill.

Did your vet tell you that after 10 days of the medicine you should return for an ACTH test to see how her cortisol is doing, and then again at the 30 day mark? They will be able to decide at the 30 day mark if Dixie's meds need to be adjusted.

Once you get to the proper dosage where her cortisol is in range and her symptoms are under control, you can then switch to a mail order compounding pharmacy which is MUCH, MUCH cheaper. I use Diamondback and they are very prompt and easy to work with and their prices are very reasonable.

As Lalosmom has said, the experts will be around shortly to welcome you and ask loads of questions. :D I know they will ask you to post any blood work that Dixie may have had done or the results from her tests used to diagnose Cushing's. Just post the values marked as out of range or abnormal.

For example ALP 431 u/l (23-212)

If you do not have a copy of her tests, please request a copy from your vet.

Again welcome to you and Dixie and please, please speak to your vet about starting at a lower dose more in line with the manufacturer's new recommendations. Do not take no for an answer on this. It is very important. Also make sure that you are given some rescue prednisone to keep on hand just in case you ever need it.

Help has arrived. We'll get you thru this. :D

[Freida]

Dear Suzie, Thanks so much for answering my post. I had a feeling that was too much to start her on. So thankful that I listened to my inner voice. I will be stopping at the vets today and getting her test results so I can answer all the questions. I have been so upset with this whole deal. If she was taking just one pill a day I could find away to buy. And will be looking into having it mixed once she is stable. So happy I found this forum.

[molly muffin]

Welcome! I'm so glad that Suzie got you the most important information right off the start. No more than one pill a day, given in the mornings with a meal.
Compounding trilostane is definitely cheaper than vetroyl in the US. My specialist didn't even go to vetroyl but straight to trilostane but many like to start with the brand name and then switch to compounded.

yes we like to know test results, so anything that is abnormal, high/low and the range would be helpful. This helps us to help you better to understand what is going on with your furbaby.

I'm glad you found us too. It's good to have support at your fingertips. :)

welcome!

[Freida]

Ok I went and got test results. Here is what I see:
ALK Phosphatas 817
GGTP 13
Cholesterol 374
triglycerides 322
platelet Count 455
monocytes 12

urine test
PH 7.5
Protein 2+

she had Zoasis cortisol series 2

Sample 1 8.0
Sample 2 45.0
Hope this helps

[Squirt's Mom]

Would you mind editing those values to show the normal ranges for each? Different labs use different normal ranges so it helps us to see what that lab calls "normal". ;)

[Freida]

Ok
Alk phosphatase normal 5-131 u/l. Dixie 817
Ggtp normal 1-12 u/l Dixie 13
Cholesterol normal 92-324 Dixie 374
Triglycerides 29-291 Dixie 323
Platelet count normal 170-400 Dixie 455
Monocytes normal 3-10 Dixie 12
Absolute monocytes normal 0-840 Dixie 1248

Urine
Ph normal 5.5-7.0 Dixie 7.5.

Zoysia- Cortisol series 2
First sample normal 1.0-5.0. Dixie 8.0
Second sample normal 8-17 Dixie 45.0

Hope this helps.

[molly muffin]

hmm, have they suggested a bile acid test? I wonder because of the GGTP being slightly elevated as this is more indicative of a bile obstruction problem, which could be like some sludge in the gall bladder.

The ALKP elevation is certainly in line with cushings and bile and sludge with the liver can go hand in hand with that.

The symptoms of being so hungry and drinking/peeing do go along with cushings diagnosis.

Have you started her on the vetroyl yet? Definitely no more than one a day, not two and as we have mentioned compounded trilostane would be much cheaper on your pocket book if you want to pursue that. Many of our members use Diamondback for compounded.

Others will be along to give their thoughts too.

[Freida]

Thanks for your feed back. I have contacted diamondback and they have quoted me a price that I can afford. Will start her on pills Sunday because I will be home to watch her.

[lalosmom]

I also went with Diamondback. And wasn't that a shock when you compared what they wanted for the trilostane vs what your vet wanted. When I actually have a few spare minutes, I am going to allow myself some anger at my vet, who is an excellent, almost intuitive diagnostician, because as I handed the information to be faxed to Diamondback, the office manager said to me that many clients used them and that they were very familiar with them. But they could not tell me that!

[molly muffin]

That is frustrating as vets should tell you the most economical way to get the medicines.
I know. I too have taken a moment to be angry at the pricing I am given vs what I have found online.

[Freida]

I will be talking to my vet tomorrow. Can't wait to see if he tells me. Have any of you had trouble getting your medicine shipped in time. I live in Florida.

[Dixie'sMom]

Diamondback has a pretty quick turnaround. Usually I usually get my in 2-3 days from the time I order and I'm in NC.

I was shocked also huge difference in the price. Since my Dixie is taking 20 mg, I get 100 at a time and its about the same price for 100 days (including shipping) as it was 15 days of the Vetoryl (@ 2 10mg/day) . I'm not kidding. And it was a huge relief to know I could afford her medicine.

Just make sure that when you are down to about 10 days worth of capsules you get your vet to send the refill RX to Diamondback and you should have no problem.

[labblab]

Of course I cannot speak for any vets or pretend to know their reasoning about this. But in some screwy way, some may feel as though it is OK to submit Rx's for compounded trilostane as long as it is the patient who has requested it rather than the vet who has suggested it. If so, this may relate to the ongoing legal battle here in the U.S. re: whether/how much oversight the FDA can levy over veterinary compouding pharmacies. Right now, according to FDA guidelines, it is illegal for compounders to prepare trilostane using anything other than brandname Vetoryl as the base. And it is only OK for the compounding to occur if no combination of the brandname product capsules can supply the appropriate dose. So I believe many of the compounded trilostane products used by our members here in the U.S. would be considered illegal by the FDA if push came to shove. Here is an excerpt from a publication of the American Veterinary Medical Association that discusses the problem with "Mimic Drugs." In many cases, the compounded trilo purchased by our members falls within this category because the sole reason for buying the trilo over Vetoryl is price (the requested dose is altered by a teeny bit solely so that it doesn't overlap with an available Vetoryl dose) and also non-FDA-approved bulk chemicals are used to prepare the drugs.


Q: What is a "mimic" drug?

A: A mimic is a compounded drug that is produced to copy an FDA-approved human or animal drug, but avoids the drug approval process and is usually compounded for economic reasons and not medically necessary therapeutic reasons. It is clearly outside the bounds of traditional compounding and it is illegal to produce mimic drugs. In addition, although these mimic drugs may appear identical to the FDA-approved product, there may be differences that affect the product's efficacy or safety. The production and prescribing of compounded mimic drugs is illegal.

Use of a mimic drug is bad for several reasons:
It denies the patient treatment with an approved drug proven to be safe, effective, pure, potent, stable and made under FDA-mandated "good manufacturing practices."
It exposes the patient to substances that have not been proven safe and effective and could be contaminated, sub- or super-potent, or unstable.
It exposes parties involved in mimicry to unnecessary liability.
It undermines the incentive for research and development oriented animal pharmaceutical companies to market new animal drugs. Without a healthy animal pharmaceutical industry veterinarians will have fewer approved therapies.

https://www.avma.org/KB/Resources/FAQs/Pages/Compounding-FAQs.aspx

Again, this is just my own speculation, but I do believe many vets turn a blind eye to this warning because they recognize that the cost of brandname drugs are often simply out of reach for their patients, especially in a situation where you'd have to be combining multiple capsules to arrive at the desired dose. Plus, many compounding pharmacies dispute the FDA's position on this and have instituted lawsuits over the years to challenge the FDA's authority to limit the scope of their compounding activity, with varying outcomes. So the regulatory water remains murky to this day. However, most all American professional veterinary associations remain aligned with the FDA in terms of current recommendations, and veterinarians do assume considerable professional liability when prescribing compounded drugs. So depending on their own past experiences, some vets may be more wary than others when it comes to suggesting and/or prescribing compounded knock-offs of FDA-approved brandname medications.

Once generic forms of Vetoryl can finally be manufactured (perhaps within the next year or so when the patent on Vetoryl expires), the whole situation will ease. Generics will likely still be more expensive than compounded mimics, but cheaper than Vetoryl. And thankfully, they will be unquestionably legal because they will be FDA-approved.

Marianne

[lalosmom]

That is really interesting and does make sense when you consider how much everyone is afraid of lawsuits. My vet did tell me initially that the herbals, which I am currently declining, would be supplied by a compounding pharmacy, but never discussed the trilostane situation...just gave me the very, very high price and left me to it. If she had told me all this and said that the ball had to be tossed to me on this one, I could have saved at least a week of trying to determine dose, price, and supplier on my own.....with the exception of the fact that this website basically filled in the blanks for me.

[Freida]

Talked to my vet today and was very surprised that I had more info than he did. Thanks to this forum I made him stop and do research. He concurred with starting her on one pill aday. Which I had already done. Looked into Diamondback and said they had a good reputation. Thank you all for this forum and the helpful advice posted here. My girl will now have a fighting chance. Will let you know how she is doing.

[molly muffin]

Awesome! Very happy to hear this news. :) Keep us updated now as to how it is going. We get to be worry warts. :) :)

[Dixie'sMom]

Great news! I'm so glad you have the kind of vet who is willing to work with you and listen. And as Sharlene said, let us know when you start the Trilo. We'll want to hear all the gory details (pees, poops, eating, drinking, etc.) LOL.

[Freida]

Ok she has been on the meds and doing Ok during the day but about 7 pm she starts to get restless. Can't seem to get comfortable was up last night till 11:45 till she finally went to sleep. Has anyone else had this?

[Harley PoMMom]

I saw from a prior post that Dixie is receiving her Trilostane twice a day, is this still being done? If so, is she getting her AM & PM Trilostane with some food? Also, when is her next monitoring ACTH stim test?

[Freida]

Dixie is receiving one 60 capsule everyday in the morning with food. She just isn't feeling good since starting. She is restless at night and now can hardly move her hips are so bad. Her next testing is Thursday that will be 10 days. She isn't drinking as much and pee is a yellow color now. I hate seeing her struggle to get up and down the stairs.

[Harley PoMMom]

For some reason, larger dogs seem to be more sensitive to Trilostane than smaller ones, so it could be that Dixie's dose might need to be decreased. Letting her cortisol run a bit higher may also help with her hips, especially if it's arthritis.

Will be checking in for those ACTH stim tests results, and I hope she is feeling more like herself soon. How is her appetite? Normal poops?

[Dixie'sMom]

Is Dixie feeling any better? How are things going?

[molly muffin]

Oh poor thing, hope she is feeling better by now. Might look into an shot for the arthritis in her hips if that doesn't improve.

[Freida]

Dixie went for her test today she has been on her meds for 10 days. She seems to be tolerating the medicine a little better now. Still real stiff in her hind quarters but I am giving pain meds 2 times a day. I really am not dealing with this well. Lost it today when I left her off. So thankful for grandson he comes and loads he into the car for me. Will let you know what they say when test results come back. Thanks for all your support.

[Harley PoMMom]

Sweety, we are here for you at all times, when ever you want to talk, vent...anything, you just come right here, ok?

Yep, as soon as you get those ACTH stim results post them ;)

Hugs, Lori

[molly muffin]

As Lori said you can come here any time at all and just let it out. We've all been there. I have days when I just want to cry, some days I do and others am fine.

We know, because we all have walked this path too.

What a nice grandson. :)

HUGS!

[Freida]

Thank you all for support. The vet called today and said the pills were working and her numbers looked good. Keep doing what I was doing and we'll check again in three months. I will get a copy of the report Monday and post. Told him how lame she was and he told me to up her pain pills. Feeling better tonight.

[Dixie'sMom]

I know its hard. As much as I try to stay positive about my Dixie and how well she is doing, sometimes I am just so sad that she is not "normal" and never will be again. Even when looking at all the positives and the bright side of things, we still grieve that that our furbabies are not at their best health. I'm glad to hear your Dixie's numbers were good and will be interested in seeing them when you get a copy of the results. It sounds like once her pain is better controlled, she may feel better all around, and if she feels better, you will also feel better.

It takes a while for everyone to adjust to the new "normal". Hugs for you and a big snuggle for Dixie. Hang in there. You're doing great, even tho it may not feel like it at times.

[molly muffin]

What where the numbers from the ACTH test? There should be 2 numbers a pre and a post. If the vet didn't give them to you, then can you call and ask for them?
We'd really like to know what those numbers are especially with the weakness in the legs.

[Freida]

I got the results from Dixie's test
Cortisol sample 1 is 1.6 regular 1.0-5.0
Cortisol sample 2 is 7.1 LOW regular is 8-17

I am concerned about the low. So glad I did not start her on 2-60 mg tablets. Thank you all for warning me that was too much.

[molly muffin]

Okay, the range you gave, 8 - 17 is for a dog not being treated. A dog being treated with vetroyl/trilostane the range you want to see is under 1.5 - 5.0ug up to 9.0ug with symptoms controlled.

So after 2 weeks, at 7.1ug you can expect it will come down a bit more. I just don't want that pre sample going too low. My dog has one pre that showed up low and the other pre have all been fine.

yes, 2 - 60mg would have been too much.

How are symptoms now? Any changes noted?
And as always keep an eye out for the not eating, lethargy, vomiting, diarrhea signs.

You're doing fine!

[Harley PoMMom]

As long as Dixie's symptoms are controlled, those ACTH numbers look good!

When treating with Trilostane the therapeutic ranges are 1.5 ug/dl - 5.5 ug/dl with a post as high as 9.1 ug/dl if clinical symptoms are controlled.

Hugs, Lori

[Freida]

She is eating but having trouble with her hips. She is falling but just waits for me to help her. She is a very happy dog, always wagging her tail. I am giving a little more pain meds. Not drinking as much so not peeing as much. She pants a lot but we are in Florida it's going to get really hot but keep the house cool with ac. Thanks everyone for your help.

[judymaggie]

Hi! Sharlene had mentioned your considering shots to help with Dixie's hip pain. My Abbie is getting a series of Adequan shots to help with arthritis/inflammation in her spine and back legs. After just two injections, I have been able to stop giving Abbie tramadol. Tomorrow we go for her first appointment with a veterinary acupuncturist. It sounds like one or both of these options would be good for Dixie. If you look for an acupuncturist, make sure he/she is a certified Chi therapist. They are trained in several different types of therapy. I am also in Florida and really want to get the arthritis under control before the hot, humid weather hits.

[Dixie'sMom]

Those numbers look good. Now if she can get some pain control with those hips your little girl will really be happy. :) :D

[Freida]

Thanks to all you loving people. I will keep you up to date with her progress.

[Freida]

Dixie seems to have settled down with her meds. Still very sore in her hips but seems to be dealing with it with pain pills. We will be trying the mixture from diamondback this week. Praying everyday but things are ok. Thanks to everyone on this forum.

[Harley PoMMom]

Glad to hear that Dixie is doing better with her Trilostane treatment, and I will be crossing all fingers and toes that this continues. ;) Keep us updated, ok?

Lori

[molly muffin]

Good to hear! Also don't forget to ask the vet about the shots I mentioned. Those are taken in a series to begin with and then gradually reduced and then a maintenance shot given once or twice a month. So that is a possibility for the hip problem too.

[judymaggie]

Hi -- just to reinforce Sharlene's reminder ... my Abbie has almost finished her initial series of Adequan shots and has had two acupuncture treatments. She is now not on any pain meds and is much more comfortable.

[Freida]

Dixie seems to be doing good with medicine from diamond head. Legs are a doing ok will talk to vet about shots when she goes back for her next visit. With that all said we have a new problem. She looks like she has flakes on her coat when I brush her. Any suggestions on what I should do for this?

[molly muffin]

Well I add in some omega 3 or some straight fish oil pills, like krill, you can also add in coconut oil.

Is she scratchy or itchy, like with allergies? Sometimes as the cortisol comes down, allergies can show up that one wouldn't know she had before. But it isn't uncommon for dogs to go through dry skin cycles, with cushings.

Good to hear from you!