Frida, Blue Heeler Mix, Just diagnosed with Cushings

[morpha]

Frida is a shelter rescue that I have had for 6.5 years, age unknown. Her vet thinks she is 9 or 10. A couple of months ago, I noticed she was starting to drink and urinate a lot more than normal. Took her to the vet for some rounds of tests and recently got a diagnosis. I don't know exactly which tests were run or what the numbers were on those tests, but Frida starts on Vetoryl on Sunday (in 2 days). I do recall that her urine was very diluted, and that the first bloodwork done showed low thyroid and some liver trouble, but I don't know what or how much.

Frida's belly is distended and I have noticed it becoming more so over the last month. She has also slowed down some and has a little difficulty jumping. I have also noticed some darkening of pigmented areas on her skin. She has always had a huge appetite and is overweight although I have tried to control what she eats. Now, it seems that her appetite is getting stronger and she has become completely obsessed with food. I have not noticed any hair loss or problems with her skin.

The past few weeks have been stressful. She gets up and drinks repeatedly throughout the night and I have to make sure she goes outside to pee every 2 hours because she has now had a few accidents in the house.

I only work part time and my financial resources are few, so one of the hardest things is worrying that I will not be able to provide her with the care she needs. I have gotten some assistance from a program at our local animal shelter, and have set up a donation page on facebook. The vet is letting me have the Vetoryl at cost and even let me take it home before completely paying for it. There are things to be grateful for.

I look forward to the time when the medication kicks in and Frida hopefully gets back to normal. I miss hiking with her in the woods.

[Bo's Mom]

I am just jumping in quickly to welcome you and Frida. You definetly found a wonderful and very knowledgeable group of individuals who can jump in at any time to answer any questions that you are going to have.
Good luck on starting the medication and we look forward to hearing more about Frida.

[Harley PoMMom]

Hi and welcome to you and Frida,

So sorry for the reasons that brought you here but glad you found us as we will help in any way we can. Bless you for giving Frida a forever home, you are a wonderful person!

It would help us a great deal if you could round up copies of all tests that were done on Frida and post any abnormalities listed along with the reference ranges and units of measurement. Cushing's is one of the most difficult diseases to get a confirmed diagnosis for since other non-adrenal illnesses share some of the same symptoms of Cushing's and not one test is 100% accurate at diagnosing Cushing's.

Diabetes and thyroid problems are two health issues that have some of the same symptoms as Cushing's, have these been ruled out?

Many members use a reputable compounding pharmacy to have their Cushing meds compounded which can save a lot of money. I am sure these members will be along to share which compounding pharmacy they use.

Please remember we are here for you and Frida so do not hesitate to ask any and all questions.

Love and hugs,
Lori

[morpha]

Thanks! Diabetes has been ruled out, not sure about thyroid. The test the vet used to diagnose Cushings took 8 hours, and involved taking blood 3 or 4 times. I will see about getting printouts of test results from the vet. We did discuss compounding, but my vet didn't know much about it and neither do I.
Oh, yes, it's pitutary Cushings according to the vet.

[mytil]

Hi and welcome from me too.

Your vet sounds like a keeper in helping you and Frida out.

Just wanted to pass on several links here. http://www.k9cushings.com/forum/showthread.php?t=212 (Financial resources that could help out)

http://www.k9cushings.com/forum/showthread.php?t=185 (Vetoryl info)

Looking forward to those test results too. :)
Terry

PS - I have a blue heeler mix too (from the shelter) - would love to see some photos of Frida :) Here she is..http://www.k9cushings.com/forum/album.php?albumid=427&pictureid=3446

[morpha]

The vet just called and due to my work schedule this week, we decided to postpone starting Frida on the Vetoryl until July 8. Also, she is going to have some Prednisone and copies of Frida's test results for me to pick up at her office next week so I will be posting that information in a few days.

Frida weighs 54lb. The Vetoryl is 120mg and the loading starting dosage will be 1/4 pill twice a day. I have experience splitting pills and capsules for myself, so am not worried about doing that.

I tried to load a couple of recent pictures of Frida in an album here but couldn't get it to work.

Thanks for your responses and kind wishes. Frida says "Woof"!

[morpha]

A little bit of Frida's history.

Frida had been abandoned by a previous owner and was living in the state forest on the hill above town. She had 4 puppies and there were sightings of them raiding dumpsters and garbage cans in an area stretching over 3 or 4 miles. Animal control were eventually able to trap Frida and 3 of the puppies in November of 2005. By then the puppies were about 9 months old. The puppies were completely feral, but Frida had been socialized to humans at some point. The father was a Rottweiler, so at time of capture, the puppies were half again as big as Frida.

I met Frida about a month after she was captured. I was a volunteer at the animal shelter at the time and met her when she was moved to the adoption area. She did not do well there; she was quiet and shy and hung out at the back of the kennel. Over the few weeks she was up for adoption, she did not do well, becoming depressed and did not present well to potential adopters. Some of the staff and volunteers were able to get to know her, however and we came to realize that she was a sweet and intelligent dog.

I had always been a cat person, but over my time at the shelter came around to appreciating dogs as well, and felt that I was ready to have a dog for the first time in my life. After a couple of months at the shelter, Frida was not doing well. She was very depressed, and nobody was interested in adopting her and. Even though it is a low-kill shelter, staff was beginning to discuss putting her down. Another volunteer and I swore that somehow between the two of us, we would not let her die.

I decided to try fostering Frida and took her home for a weekend. I never took her back.

As I had not had a dog before, it was a big adjustment for both of us. A dog is a lot more work than a cat! (Duh!) But it has been so worth it, and Frida turned out to be an amazing dog. She is smart and loving and loyal.

Frida has always had some problems with appetite. No matter how much I fed her, she always wanted more. She has always stolen food at every opportunity. Once she ate a 2 lb block of cheese that I had left out on the counter. Every time we go out in the woods, she finds bones and brings them back. She hunts, kills, and eats mice, moles, rats, and bugs and has always eaten any kind of non-dog poop she encounters. She knocks over garbage cans, has stolen entire cakes off of the table and once, made off with and ate an entire turkey carcass. I have always tried to control the amount of dog food I feed her, but even if I didn't feed her, she is perfectly capable of scrounging her own food.

In the 6.5 years I have had her, Frida has never been sick until now. Now, we can't go on long walks because she gets too thirsty and tires easily. She doesn't play as much and is listless. Never a good jumper, she often now needs help getting into the truck. Some days, she seems really off - her ears are down all the time, she doesn't want to get up, she won't play at all and she seems really down. Other days, she is almost her usual self again. Except for the excessive drinking and peeing. It is as if she has aged quickly over a period of 2 or 3 months.

I hope the medication can get her back to her usual happy, energetic self. I look forward to being able to sleep the night through again.

[mytil]

What a very nice ending for Frida to have a loving home after being dumped. Thank you for sharing her story - I am sure she was very scared and missing her pups.

I PMed you with the instructions for uploading photos.

Terry

[Squirt's Mom]

Hi Morpha,

I wanted to comment on something you said. Cutting pills is not a problem, however dividing capsules is. Since the powder in the capsules is not pure Trilostane (Vetoryl) and is part filler powder, by dividing the powder inside you cannot be sure of the balance between the drug and the filler. So dividing capsules is never a good idea as you cannot gauge the potency of each dose. So insist on pill form or have the dose compounded if needed. ;)

Sometimes dogs who have had the "opportunity" to be "wild" never quite get over the rediscovered instinct to hunt and find their own food - even if it's not that great for them. :) I have worked with dogs who were starved at one point and some of them were kinda like folks who survived the Great Depression - they could never quite accept that there would always be plenty of food from now on and would gorge, or hoard, at every opportunity. A cush appetite is still different from this, tho. When Squirt's cortisol started rising and that appetite kicked in, it was heart-wrenching to watch. I could see in her eyes that she truly believed she was starving to death...just after finishing her meals even. :( She has always been my Miss Piggy and I worried that I wouldn't know the difference between her usual appetite and a cush one. Boy! Was I wrong! :p

Hang in there! You are doing a fine job! I'm really glad you found us and look forward to learning more as time passes.

Hugs,
Leslie and the gang

[Kathy]

Hi Morpha, I am quite new to this site, but I want to welcome you and tell you that this group has been so helpful to me as I started treatment for my dog Maggie on May 14. I feel that I have also had great support from our vets in Portland, Oregon, as well as the benefit of a well respected compounder who provides us with the Trilostane liquid. Maggie is a 45-pound Aussie, will be 12 years old on 8/15, who is taking 35 mg. of Trilostane twice daily.

Maggie has done exceptionally well on the drug. Today is her 46th day. We had a little blip with a reaction to Metacam (bloody vomit) on day 21 at 4:30 a.m. on a Sunday morning. I gave her the overdose antidote prednisone as instructed by the vet in case of vomiting, etc. when her office was closed. Of course, this happened on a Sunday morning when everything was closed. Maggie seemed fine after the vomiting incident, but I discontinued the Trilostane until Monday morning when I could talk with the vet. She attributed the vomiting to metacam, and Maggie restarted Trilostane three days later. Since then all has been fine. She has a spark in her eye, the excessive thirst tamed to normal within the first few days of starting, and that eliminated the incontinence. Her excessive hunger also tamed, although she still has a pretty good appetite, except when it comes to taking pills. Her fur has started to grow in a few places. She will go for her next ATCH stim test tomorrow. Just wanted to let you know that I was so scared to start, but things are working very well. This group has been a life saver for me. I have learned so much--it's one thing to read something or hear something from the vet, but everyone in this group has lived with a dog with Cushing's. That knowledge and experience just can't be beat. Thank you everyone, and the best of luck to you and Frida. Kathy

[morpha]

"I wanted to comment on something you said. Cutting pills is not a problem, however dividing capsules is. Since the powder in the capsules is not pure Trilostane (Vetoryl) and is part filler powder, by dividing the powder inside you cannot be sure of the balance between the drug and the filler. So dividing capsules is never a good idea as you cannot gauge the potency of each dose. So insist on pill form or have the dose compounded if needed. "

Unfortunately, I already have the medication, which I have not yet completely paid for. And cannot afford to buy more at this time. What should I do?

[morpha]

"Sometimes dogs who have had the "opportunity" to be "wild" never quite get over the rediscovered instinct to hunt and find their own food"

Yes, I have thought that was the case with Frida as well as her "I'm starving" approach to food. The handful of times that I have seen her eat until she wanted no more, she would guard whatever was left until she had room to eat again.

Over the past month, I have noticed an increase in her intensity about getting food. She seems to be more desperate - has pulled over a 200lb garbage can to get at a chicken carcass. The change in appetite has been very gradual and as of now is not greatly different form the way she has always been. I have always had to limit what I feed her and she always seems to find more anyway.

[labblab]

I'm afraid I have to agree with Leslie that I would feel very worried about trying to accurately split a 120 mg. capsule into four equal doses. Plus, the manufacturer of Vetoryl (Dechra) publishes a specific warning against trying to open or manipulate the capsule contents at all. I appreciate the fact that your vet is trying to save you money, but I am surprised that the he/she would endorse dosing Frida in this way.

For a dog of Frida's weight, a daily total of 60 mg. is a reasonable starting dose per Dechra. But since Vetoryl comes in 10 mg., 30 mg. and 60 mg. capsules, I am confident they would recommend purchasing the correct size capsule rather than splitting a larger dose. For what it's worth, Dechra also recommends starting first with once-daily dosing and only switching to twice-daily dosing in the event that symptoms are not managed adequately throughout an entire 24-hour time period. Some specialists and vets do prefer twice-daily dosing right from the get-go, but in terms of brandname Vetoryl, that may make the dosing more expensive since two boxes of 30 mg. may be more expensive than one box of 60 mg. capsules. The medication is available from online pharmacies, so you may want to investigate pricing a bit more yourself.

As to what to do with the 120 capsules you currently have, one option would be to see if you can find a compounding pharmacy near you that would be willing to either professionally "repackage" the contents into smaller units or perhaps transform it into a liquid suspension that can be dosed more accurately. But that will undoubtedly involve extra cost to you. And as I say, I am wondering whether you can discuss this issue further with your vet since you really should not have been given the 120 mg. capsules with the intention of opening and manipulating the contents yourself. In my own mind, I think your vet actually owes you an exchange of capsules. And as for the future, if brandname Vetoryl in the correct dose is just too expensive for you to shoulder, I agree that you may wish to explore compounded trilostane as an alternative. It will undoubtedly be less expensive.

Marianne

P.S. Here is the warning from Dechra's U.S. Product Insert for Vetoryl:


Wash hands after use. Do not empty capsule contents and do not attempt to divide the capsules. Do not handle the capsules if pregnant or if trying to conceive. Trilostane is associated with teratogenic effects and early pregnancy loss in laboratory animals. In the event of accidental ingestion/overdose, seek medical advice immediately and take the labeled container with you.

[morpha]

What is compounding?

[labblab]

"Compounding" involves the manipulation of a drug to fulfill prescribed dosing needs or requirements that are not already available in a prepared brandname or generic form. To be legally sold within the U.S., brandname and generic drugs are manufactured en masse in specific doses and in a specific form (pill, capsule, etc.) by licensed pharmaceutical companies under FDA guidelines. But let's say, for instance, that a human or an animal needs the drug in liquid form because they are unable to swallow pills. Upon receiving a prescription, a compounding pharmacy is permitted to alter the original form of the drug in order to fulfill the needs of that specific patient. That is just one example of the benefit provided by "compounding."

As it relates to Vetoryl/trilostane, trilostane is the chemical name for the active ingredient in brandname Vetoryl. There are currently no generic equivalents of Vetoryl, and Vetoryl itself is prepared and marketed only in capsules of four dosing strengths. By combining different dosage strengths, many additional dosage totals of Vetoryl can be obtained. But this can become very expensive. So if a dog needs a dose other than what is commercially available in Vetoryl (or if the dog needs the medication in a different form such as a liquid), a vet may choose to write a prescription for trilostane in a different dose or form, and this prescription can be prepared onsite by a compounding pharmacy. However, when the compounding pharmacy prepares or manipulates the medication in this way, it is outside the scope of FDA testing or approval because the drug is being tailor-made for one specific patient.

And where things get hairy legally right now is when compounding pharmacies use "bulk" trilostane as the basis for their manipulated product (meaning a raw chemical that they have purchased themselves from whatever source they choose), as opposed to brandname Vetoryl. This is what makes compounded trilostane much less expensive than brandname Vetoryl. However, there is currently ongoing litigation between the FDA and compounding pharmacies regarding the legality of this practice. And there has also been some recent concern expressed over the accuracy and effectiveness of certain compounded trilostane products.

There are many different perspectives on these issues, and I'll give you a link to a post here that contains a lot more related information. For some dogs, compounded trilostane is their only option because they need a dose or a form of the medication that is unavailable in Vetoryl. And some vets are OK with prescribing compounded trilostane simply due to the high cost of Vetoryl. Other vets really prefer that their patients only use FDA-approved products, and therefore want to stick with Vetoryl. We do have many members here who use compounded trilostane; we have others who prefer to stick with the brandname product. Do take a look at this link so that you'll better understand the difference between the two, and then you can discuss the subject in greater detail with your vet. One last note: compounded pills or capsules cannot be sold in exactly the same dosage strength as Vetoryl, so if your vet prescribes a compounded product for Frida it will have to be either slightly higher or lower than the dose of Vetoryl that she would otherwise be taking. Here's that link:

http://www.k9cushings.com/forum/showthread.php?p=1254#post1254

Marianne

[morpha]

Thanks for the information on compounding.

I have another question. Is it better to treat Pituitary Dependant Hyperadrenocorticism with Trilostane or with Mitotane?

Hope all had a happy 4th and your furry friends didn't get too upset by the fireworks.

[mytil]

Hi again,

To answer your question on which med is best . . . . well it depends. (sorry to sound so non-committal here), here are a few things to consider. Both work well.

- how experienced is your vet in successfully treating with one over the other (this one is really important).
- understanding how each one works - with Mitotane (Lysodren) there is a "loading" period and then a maintenance dose...with Trilostane, there is no loading period and the dose is recommended to start low and build up as necessary - depending upon the ACTH results. Trilostane may raise certain hormone levels in some dogs and Lysodren does not.
- is your Frida on any other meds (specifically heart meds - ACE inhibitors? then is best not give Trilostane).

Hope this helps
Terry

[morpha]

Here are Frida's test results. I think you just want to see the abnormals? The vet says she is 9 years old.

5/30/12 - Comprehensive Chemistry Profile
Albumin 4.4 g/dL - high
Alt (soft) 320 U/L - high
SDH 22.3 U/L - high
Alk Phos. 2504 U/L - high (test repeated and verified)
GGT 15 U/L - high
CL 103 mmol/L - low
Anion gap 28 mmol/L - high
Cholesterol 344mg/dL - high
Amylase 278 U/L - low
CK 357 U/L - high

5/30/12 - Complete Blood Count
LYM% 12% - low
MCV 81fL - high
MCHC 30g/d low

5/30/12 T4 (total)
<0.5 ug/dL

6/12/12 Low Dose Dexamethasone Suppression
Cortisol (Pre) 9.2 ug/dL
4hr 7.0 ug/dL
8hr 9.6 ug/dL


"I'm afraid I have to agree with Leslie that I would feel very worried about trying to accurately split a 120 mg. capsule into four equal doses. Plus, the manufacturer of Vetoryl (Dechra) publishes a specific warning against trying to open or manipulate the capsule contents at all. I appreciate the fact that your vet is trying to save you money, but I am surprised that the he/she would endorse dosing Frida in this way."

I brought up the issue of splitting capsules with the vet. She says she has had clients that have done that by cutting the powder into piles with a razor blade. She is looking into compounding for me, but she says that in her experience, it doesn't always work as well. She has some experience with Cushing's, but not a lot. She says I can return the Vetoryl and get my money back if I want.


Re Trilostane vs Mititane:

"To answer your question on which med is best . . . .
- how experienced is your vet in successfully treating with one over the other (this one is really important)."

She is comfortable prescribing Trilostane, I'm not so sure she is with Mitotane.

"understanding how each one works - with Mitotane (Lysodren) there is a "loading" period and then a maintenance dose...with Trilostane, there is no loading period and the dose is recommended to start low and build up as necessary - depending upon the ACTH results. Trilostane may raise certain hormone levels in some dogs and Lysodren does not."

I guess I still have a poor understanding of all of this, I had thought there was a "Loading" period with both medications.

"is your Frida on any other meds"

Frida has a heart murmur, which we have known about since last year. The vet has put her on an omega 3 supplement called Omega 3-6-9 by Vet Classics. Frida is not currently taking any other medication or supplements.

My big concern here is that as my income is far below poverty level, I am not going to be able to afford to care for Frida properly over the long run. I got enough financial assistance and donations to cover some of the tests that have already been run and pay for most of the first box of Vetoryl. In the future, I know that I will not be able to continually afford $70/month for Vetoryl. There is medication that I need for myself that costs less than that and I don't buy it.
I am willing to invest what I can in Frida's health and well being and don't want to deny her something she needs. I'm just trying to figure out if there is a method of treatment for her that I can realistically afford. Not taking care of Frida is not an option here, just so I make myself clear.

I know I carp a lot about this, but it's a big worry for me. Our vet seems willing to work with me. She is going to look into the cost of compounding and get back to me. We will decide what to do together. She is supposed to get back to me by Saturday afternoon as we had planned to start Frida on the Vetoryl this Sunday.

Thanks for your advice and help.

[StarDeb55]

Here's a late welcome from me, to yu & Frida! Hopefully, I can address some of your questions in your last post. Let's address how the drugs work first. Lysodren has a loading or induction period because you are selectively eroding enough of the adrenal cortex where cortisol is produced to bring the cortisol down to a more healthy range. Once the pup is loaded, meaning his cortisol is, now, between 1-5 ug/dl, you then go to maintenance dosing where the drug is given several times per week, not daily. This is to maintain the level of erosion of the adrenal cortex so excess cortisol can't be produced. Remove the lysodren, the adrenal glands will begin to regenerate, & the result will be the excess production of cortisol. Some pup's adrenals seem to regenerate in the blink of an eye, almost, others will take longer, but with no medication, the adrenals will eventually regenerate.

Trilostane is an enzyme blocker. This means that it effects the biochemical pathway in the adrenal glands that produces cortisol, thus slowing down cortisol's production but does not stop the production, nor does trilostane have any direct effect on the tissue like lysodren does. Remove the trilostane, you have unblocked that pathway, & excess cortisol production starts up, again. The other big difference is trilo loses effectiveness in the body in about 8-12 hours. Lysodren reaches maximum effectiveness at about 48 hours after giving it.

There are a lot of different opinions in this group when it comes to the use of a compounding pharmacy. I have used Diamondback Drugs for years to have a number of my dog's meds compounded as the standard doses that were available were much to big for the little guys that I usually have. Diamondback is well know in the vet community in Arizona & S. Calif., & has a great reputation. None of my vets have ever had a problem with me getting any of my boys meds from them. I'm pretty sure they will ship anywhere in the country for a standard fee. You can do a "google", & easily locate them.

I hope this helps.

Debbie

[labblab]

If brandname Vetoryl is an affordable option, I am one of the folks here who endorses starting out with it at the time that treatment is initiated. Everything else being equal, I would feel more comfortable sticking with the brandname drug at least until the dog has been stabilized on a specific dose.

However, in your case, everything is not equal and it sounds as though the cost of brandname Vetoryl could be a major burden for you. Under the circumstances, I think it is wonderful that you are willing to pursue treatment for Frida and I endorse Debbie's suggestion that you investigate Diamondback Drugs for a compounded product. As she says, a number of our members have used Diamondback through the years and they are very familiar with our members and this forum. And I do think the cost savings would be significant.

Whatever route you choose, I wish you and Frida GOOD LUCK!!

Marianne

[morpha]

Frida has been on Vetoryl (30mg x 2 per day) for a week and a half and is responding well. Her drinking and urinating have gone back to normal levels. She is slowly getting energy back and has started playing again. I take her for short walks, but she gets tired if we go too far or up a hill. She still can't jump up into my truck.
Her vet is happy with how she is doing, according to urinalysis, Frida's cortisol levels are now in normal range. ( I will post quantitative results later)
We were switched over to 30 mg Vetoryl capsules and were allowed to return the 120mg capsules at no charge, but the 30mg capsules cost $80 for 14 days. That's a huge percentage of my tiny paycheck and I won't be able to keep paying that much. The vet is supportive of us switching over to a compounding pharmacy.
I contacted Diamondback Drugs today and got a quote. Their price for trilostane is a fraction of the cost for Vetoryl. I think I can afford this - yay!
It is such a load off of my mind to see Frida feeling better, to have us both being able to sleep through the night without numerous trips to the water bowl and outside to potty, and to know that I am going to be able to provide care for Frida after all.
Thanks for your advice. I will keep you posted.

[mytil]

I am so very glad to hear this good news :D- was wondering how things were going with you and your girl.

Please continue to keep us updated and post those numbers when you get them.

Terry

[morpha]

It's been stressful, but I wasn't ready to share. I found that posting on this site when I was stressed out about Frida made the stress worse for me. I was starting to second guess my decisions and freak out about them. It's better now with the positive things that have been going on with respect to Frida.
I have been glad that I had the resource provided through everyone on this site. It's really helped a lot.
Thanks!