Hi - New member seeking advice

[Chris&Ginger]

Hello - my name is Chris, the proud owner of an approximately 11 year old Collie-Shep mix named Ginger. She is a rescue shelter dog, so i'm not sure of her exact age, but based on what I do know she's somewhere in the 11 or 12 year old range. She's in good health, other than a recent DX of Cushing's.

She had become a little heavier with age, from the 70lb or so range up to about 75lbs - a little "chubby" but still ran around with plenty of energy. About 6 months ago i noticed she looked like she was retaining water, belly was full and kind of solid, and she drank water like a fish - she ballooned up to 88lbs, and couldn't keep up with me on our daily hikes anymore.

After going to her vet, they suspected Cushings. She went for the full day of testing and a few days later the lab results confirmed she had Cushings. The vet started her on 120mg of Vetoryl once daily. She started on Sunday and was OK the first couple days, however she started vomiting on Tuesday night, then Wednesday and again today. She's not eating very much at all and has no energy.

The poor thing I know feels bad about vomiting in the house, this is a dog that never once had an accident in the house, and i think she feels like i am mad at her, so to compound her not feeling well physically, I think she is depressed on top of it.

I have a call into my vet asking if i should skip a day of the meds. It is the highest dose, i'm wondering if maybe she should have been started at a lower dose. She goes back to the vet for her first post-med blood work testing on Tuesday.

I'd be interested to hear any comments or experiences of fellow owners on the first week or two of starting the meds - is what i'm seeing typical? Any tricks to try to get your dog to eat something...or should i just let her eat if she wants and not try to interfere?

I'm very happy to find this forum, lots of good information and i look forward to any comments or responses. Thank you in advance.

Chris

Oh - one last thing: the vetoryl is ridiculously expensive. I will be shopping around to try to find it at a lower cost, going through my vet it was $180 for a 30 day supply. That seems kind of high (?) ...not that money would stop me from taking care of my girl of course.

[Harley PoMMom]

Hi Chris,

Welcome to you and Ginger, so sorry for the reasons that brought you here but glad you found us.

Vomiting is one of the signs of a dog's cortisol going too low so if this were me, I would definitely stop giving Ginger any Vetoryl and schedule a visit with the vet ASAP.

The 120 mg dose that the vet started her on is high and even though Ginger does weigh 88 lbs, we have seen that dogs do better starting out at a lower dose. Although I am not a vet, I believe 60 mg or 80 mg would of been a ideal starting dose for Ginger.

Could you round up copies of all tests that were done on Ginger and post any abnormalities that are listed, here. We are especially interested in the results of any Cushing test that were performed.

Many members use a reputable compounding pharmacy for the Cushing meds, such as Diamondback Drugs or Roadrunner. The meds are expensive and having them compounded does save some money.

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

Love and hugs,
Lori

[lulusmom]

Hi Chris and welcom to you and Ginger,

Please DO NOT GIVE GINGER ANY MORE VETORYL and get her to the vet asap. She is showing signs of low cortisol and it can get dangerous very quickly. Your vet should have instructed you that should Ginger start showing signs of low cortisol, such as vomiting, diarrhea, extreme lethargy to stop dosing and get her into the office. Vetoryl not only reduces cortisol, it can also have an adverse effect on aldosterone, which is the adrenal hormone that maintains the body's salt and water balance. If aldosterone drops too low, electrolytes go out of whack and it is life threatening.

Please get Ginger to the vet for a stim test or at the very least, have electrolytes checked and do not give her any more Vetoryl until she is completely well and acting normal again.

Glynda

[cheydogger]

Oh, yes, quit giving her the med and call your vet immediately. I just started my girl on Trilostane/ Vetoryl and she had diarrhea after two days on 75mg and she weighs 53-55 lbs. we then laid off two days and started her on 60mg. I don't know why these vets want to start these dogs out on such a high dose. Thankfully, I started seeing an internal medicine specialist because my regular vet was going to start Chey on 120mg too. That would have been a disaster!

Chris- Dechra is the manufacturer of Vetoryl. They have wonderful customer service to answer any and all of your questions plus members on here are very knowledgable on Cushing's and the meds used. Dechra really likes to see a dog start out on ~1mg per pound. You can always work up to the higher strengths if need be.

First line of order is to call your vet now!

[mytil]

Hi and welcome from me too - sure am glad you found us.

I too would stop the Vetoryl and call your vet. Some dogs have a sensitivity to Vetoryl and although this is within the recommended range, it is a high dose.

Have them check not only the cortisol levels but also the electrolytes (as mentioned in the other's posts).

Please keep us posted
Terry

[Tina]

Hi Chris, and welcome from me also. How is Ginger today? Have you been in touch with your vet? Let us know when you can.

Tina and Jasper

[Chris&Ginger]

Hi Everyone,

First - thanks for the advice, you guys were spot on. I called the vet and explained the symptoms and they wanted to see her right away. It was within 6 hours of her last dose (even though she threw up not long after), so they had a period of time where they could run labs, so I got her over to the vet ASAP, and they kept her for about an hour and did some blood work, and sent samples to the lab.

So what they found was that it appeared that the meds were working, but they may have been working a little too well. However the main problem was dehydration at this point. So, the vet gave her some fluids and Pepcid to try to calm her stomach and instructed me to take her home and try to get her to drink and eat some belly-friendly foods and keep her on pepcid for a few days and no more Vetoryl for now.

I had questioned the vet about the dose, which seemed pretty high to me. The vet said that the meds were working well, but agreed that perhaps it is too strong (she lost 10lbs in 4 days).

So, over the last 24 hours Ginger has pretty much returned to normal, she's drinking, eating - although not quite as much as usual, and has a little bit of pep in her step. So I think the crisis has been averted. The question will be what to do next. The Vetoryl was working, so i am thinking that restarting her, but at a lower dose, will be what the vet wants to do. I don't know if they can create lower dose pills from the 120's that i already have, or if i'll just have to purchase a lower dose. Guess we'll see.

I don't have the exact lab values of the tests - what i get from the vet is basically just the invoice that states the test(s) performed and the cost. I can try to get copies of the lab work from her chart when she goes back at some point this week, and post them up here.

Thank you all very much for your support and advice - I really appreciate all of the info and kindness you folks have shared with me.

-Chris & Ginger

[Tundra's Mom]

Hi Chris,

I am pretty new here too, and I just want to welcome you and Ginger.

I don't know enough yet to really give you any advice, but I want to tell you that you are in good company here and you are no longer alone :) (Someone told me that when I joined, and it really was a big relief!).

I read all of the comments you received and actually learned a great deal from them, so thank you and thank everyone who responded!

Happy Holidays, I hope the best for you and Ginger.

-- Annie
(Tundra's Mom)

[molly muffin]

Hello and welcome. Just ask the vets office for copies of all test results going back to before the medication was started. We've all been down this road and having copies of the tests is something you'll want. If nothing else just to refer to when you have some question about something, to refresh your memory and also in case Ginger ever needs to go to the vet ER you'll have all the history at hand.
Definitely going to want to look into a lower dose and I know that several member have used a compounding pharmacy. You want to make sure it's a good one though with a good reputation. I think some have used Diamondback. Others can tell you more about that though.

so glad you found us. :)

Sharlene and Molly Muffin

[Chris&Ginger]

Thanks for the kind words and welcome Annie, and for the advice on getting the labs Sharelene. You are right, i want to see those records and the values myself. I'll see if there is a compounding pharmacy around here somewhere that has a good reputation.

I started educating myself about this disease before she was diagnosed, as it was suspected she had it. I still have a whole lot to learn about this illness - having friendly and knowledgeable folks speak up and help me along feels great.

It does feel good to know Ginger and I are not alone in this fight.

I'll be calling the vet today and see what's next and post an update!

[lulusmom]

Hi Chris,

I'm so glad Ginger is feeling better and I commend you for getting her to the vet. It would be great if you could post the actual results of the acth stimulation test or any other test that was done to determine Ginger's cortisol levels in the er. I agree with Lori that a lower dose would have been much preferrable to begin with but hindsight is 20/20. You may want to mention to your vet that Dechra's published dosing recommendations are not what they currently recommend. They suggest that you start a dog on a conservative dose of 1mg per pound. In Ginger's case, that would have been 70mg. I personally would not feel comfortable with any dose more than 60mg at this point but before I started dosing again, I would definitely want to see the stim test results. Just because Ginger is feeling better doesn't mean her cortisol is high enough to start treatment again.

We will all be interested to see what your vet suggests.

Glynda

[Chris&Ginger]

Thanks for the insight Glynda! Very valuable. So Ginger's behavior returned to normal and she started to over-drink again and i could see her start to retain water some, so i took her to the vet last night for a draw so they could check electrolyte levels and the rest of the lab values and determine if/when to start meds back up. They are supposed to have those results to me this afternoon.

I also requested a full copy of her chart, so hopefully i can pick that up in the next day or two.

I discussed the meds with the vet pretty extensively. She had said this is the first time they had a dog react in the manner Ginger did - basically showing signs of Addison's within just a few days of starting treatment. She said normally if this occurs they don't see it until later in the treatment cycle.

So, the vet is going to discuss the issue of med dose with her partner and other colleagues, and she also said she will be contacting the manufacturer about dose instructions. I'm thinking i am going to be stuck with these 120mg capsules - i asked her about a compounding pharmacy, and she didn't know about that either but said she would see if she could find something.

So...needless to say I'm not exactly brimming with confidence that my vet knows exactly what to do here. I do know that there is no way i'm giving Ginger that high a dose again, so i'm going to guess that she'll probably start back up with a 30 or 60mg dose, and i'm not giving her any meds until the lab results prove that her system is capable of handling the meds.

I'm thinking of possibly seeking another opinion. It's an expensive proposition and i don't want to put Ginger under more stress, so i'm holding off for now.

Thanks again, i'll keep ya'll updated and hopefully get those lab results to post!

[cheydogger]

You are certainly not alone:). It is a lot to consume and stressful trying to get them regulated. We are watching and constantly scrutinizing their every move. It's hard, but at least we have this community of people going through the same thing we are.

Take care,

Ro and Chey

[molly muffin]

Yay on getting Ginger to the vet. It Does sound like your vet is willing to work with others and figure this out, so that is good at least. Are you in the US? If so, the members here can give you information on the compounding pharmacies they have used.
My vet never mentioned a compounding pharmacy but when the specialist mentioned a lower dose of vetroyl she gave my vet the name of a compounding pharmacy to use. I haven't had to use it yet, but they are available here in Canada too and we know they are in the US.
Oh, also do an online search perhaps for compounding pharmacy in your area, that can repackage the 120mg pills into something else.
You're doing good. Hang in there!!
Sharlene and Molly Muffin

[cheydogger]

I am glad to hear your vet was going to contact Dechra as well. They are very helpful. Chris, you can even call Dechra if you want. They will talk to you too. A compounding pharmacy that my vet recommended and also many members on here use is Diamondback.

[Chris&Ginger]

Good morning everyone - so some good news, last night i got in touch with the distributor of the vetoryl that supplied the meds to me thru my vet - Vetsource.com. They were extremely helpful. I explained the situation to their staff pharmacist. He said that i could cut the capsuls and give her half a day, but said that was just an option if i was comfortable with that. I told him I'd rather not, which he said was understandable - considering i would have to do this for almost 2 months since i have 24 unused 120mg caps and would only be giving her half a day.

So, he is calling my vet this morning to discuss with them the best way to take back the 120mg capsules i have and supply me with 60mg instead. He said that they felt a responsibility to make sure that they took care of me and my dog the best way possible, and felt like it was on them to help me out because of all of the extra expense with the additional lab work required. They were also very interested in hearing and documenting how the situation played out, the timing of her adverse reaction, the exact reactions she had, etc. So it was a nice surprise to actually get some support from them, I had been expecting the typical customer service run-around that usually happens when you call a company.

So...hopefully i'll have a call from my vet soon to tell me the 60mg caps are on the way and i can bring them back the 120's.

As for compounding, i did read the literature Dachra has on their website about compounding and the legality of such in the US (I am in Pittsburgh, PA). It seems a little murky, as the FDA regulation indicates that compounding is acceptable in circumstances where a pre-packaged dose isn't available for the clinical requirement. So i was saving that as a last resort if I couldn't get remediation through the vet/distributor. But it sounds like i won't have to go down that road, thankfully. I did ask my local Target pharmacist about compounding since i happened to be there yesterday and they had basically no idea what i was talking about, pretty much as expected.

I'll let you all know how it goes! And thanks for the tip on Diamondback cheydogger - if i end up doing the compounding thing i'll be sure to give them a ring.

Awesome support from all of you, I am so thankful for all of your help and suggestions!!

[molly muffin]

Hi Chris, wishing you and Ginger a Merry Christmas. Have a safe and wonderful Holiday Season.

hugs,
Sharlene and Molly muffin

[Chris&Ginger]

Thank you Sharlene! Hope you had a wonderful holiday season as well.

Update on Ginger - after a lot of discussion and evaluation it was decided to give Ginger the 120mg dose every other day and see how she tolerates that method for a couple weeks, rather than try to return the 120's and get 60's. Apparently Vetoryl is rather slow acting and therefore distributing this dose level across 2 days would be similar to giving her a 60mg tab daily.

So we started her back up after her kidney function tests came back good to go and she started to show the signs of Cushing's again (she was back to chugging water pretty fast). I'm about a week into this method and so far, so good! Ginger has already lost some weight, but she has kept a pretty high energy level, actually she seems a little more peppy than usual. She has been drinking pretty normally (she loves to eat snow, and we have a bunch of it, so that has been helping). I notice she has a little bit of a crash on med days, she will slow down a bit, not much, then on the off day she's full speed ahead.

So fingers crossed, I am going to stick with this method for another week or so, barring any adverse reaction/Addison's symptoms popping up, and then have her labs run again. Not sure what we will do once i run out of 120's, whether we will stay on the same path or switch to 60's daily.

I'm still waiting for copies of her labs/chart to post....I need to nudge the vet to get that info to me.

But anyway, just wanted to let everyone know we are doing much better, and the every-other-day method seems to be working pretty good!

Take care all,
Chris & Ginger

[SoggyDoggy]

Hi Chris,

I have just read your thread and your vet sounds very similar to mine - No Idea - but at least they are willing to talk and get some further advice.

My advice to you, ring them and ask them to send you copies of all previous tests immediately, then sit down and have a read through them. I did this and picked up on some pretty huge mistakes my vet had made that could have been catastrophic for my little boy, however I managed to catch it in time and now we are going great (with help from a specialist) You mentioned at one point maybe getting a second opinion. If you can, try and do that with an Internal Medicine Specialist. The difference in advice and information you get is just so incredible, its really reassuring and gives you confidence that you're on the right path. Having worked with a vet who really didn't know what she was doing (but wouldn't admit it) I cant sing praises loud enough about a specialist!

Anyway, I will leave it to others to comment on the every other day dose, but from what I have read and heard, I don't think this is the best solution. I actually sounds pretty traumatic to Gingers system, if she is down on the dose day and then full speed the next. Sounds like she is having high and low swings, which can't be good for her. It's also going to make it very difficult to get an accurate ACTH test to monitor her progress.

I agree the meds are expensive - I am stuck with 80 caps left (100 caps cost me $460 - Vet told me they were unavailable in smaller quantities which I've also since found out is untrue) so about $400 worth of unused meds sit on my kitchen shelf, but it really is worth it to just suck it up and get the right strength and medicate properly. My boy Fraser is now on 10mg 2x a day, vs 60mg (too high) once a day. I have to say, he is now well throughout the whole day as his medication is consistently in his system and his symptoms are properly controlled. If you have someone that is willing to work with you and do a deal to compound the caps, look into it.

Anyway, that's just my 2c worth, but good luck, I hope things work out as well for you as they seem to be going for my boy now. All the best and HAPPY NEW YEAR!

Naomi and Fraser.

[Squirt's Mom]

Apparently Vetoryl is rather slow acting and therefore distributing this dose level across 2 days would be similar to giving her a 60mg tab daily.

Just and FYI - Vetoryl has a very short life in the body. It is leaving the system in 2-12 hours. For this reason, the monitoring ACTHs must be performed within a window of 4-6 hours after the last dose or the test is invalid. Vetoryl lowers the cortisol more quickly than Lysodren in most cases. So it is not slow acting and on every other day dosing, the odds are there is very little medicine in the body within 24 hours of the last dose.

I am SHOCKED that Dechra told you it was ok to "cut the capsule". :eek: From Dechr's product insert (which you should have been given by your vet) -


HUMAN WARNINGS:
Keep out of reach of children. Not for human use.
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.

[labblab]

Update on Ginger - after a lot of discussion and evaluation it was decided to give Ginger the 120mg dose every other day and see how she tolerates that method for a couple weeks, rather than try to return the 120's and get 60's. Apparently Vetoryl is rather slow acting and therefore distributing this dose level across 2 days would be similar to giving her a 60mg tab daily.

So we started her back up after her kidney function tests came back good to go and she started to show the signs of Cushing's again (she was back to chugging water pretty fast). I'm about a week into this method and so far, so good! Ginger has already lost some weight, but she has kept a pretty high energy level, actually she seems a little more peppy than usual. She has been drinking pretty normally (she loves to eat snow, and we have a bunch of it, so that has been helping). I notice she has a little bit of a crash on med days, she will slow down a bit, not much, then on the off day she's full speed ahead.

But anyway, just wanted to let everyone know we are doing much better, and the every-other-day method seems to be working pretty good.
Hi Chris,

I'm really glad to hear that Ginger is doing better, but I want to caution you against dosing longterm with the 120 mg. every other day. I am surprised you've been told that trilostane is a slow-acting drug, because this information is directly contradicted by Dechra, the manufacturer of brandname Vetoryl. In their published materials, they state that trilostane peaks in the body approx. 1-2 hours after administration, and has already exited the system after only around 12 hours. Dechra acknowledges variability among different dogs, but this is not the profile of a drug that is slow to act. Here's a quote from Dechra's U.S. Product Insert:


Trilostane absorption is enhanced by administration with food. In healthy dogs, maximal plasma levels of trilostane occur within 1.5 hours, returning to baseline levels within twelve hours, although large inter-dog variation occurs. There is no accumulation of trilostane or its metabolites over time.

And here's the source: http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

Given the way that trilostane works, it doesn't surprise me that Ginger would be "off" on the day that she's receiving too large a dose, and that she might see some symptoms return on the day that she's not getting any dose at all. This is a very inconsistent way of administering the medication, and I'm puzzled that it would have been recommended to you for any reason other than just to eliminate the cost/hassle of exchanging the capsules on the part of your supplier.

I'm also troubled that Vetsource.com originally told you that it was OK to open the capsules and divide the powder. This is also specificially warned against by the manufacturer. So if the website that sold you the Vetoryl is the source of all this dosing info, I'm afraid it is very untrustworthy. You can confirm the accurate info by contacting Dechra directly.

http://www.dechra-us.com/Default.aspx?ID=365

Marianne

P.S. I see that other members were also writing to you at the same time as me, so do be sure and go back to the previous page so as to read their replies, as well.

[molly muffin]

I agree with the others. Everything I have read, has trilostane having a short time in body, unlike lysoderm which you can use only a couple times a week. You would basically be crashing ginger for one day, and then letting the cortisol come up on the next day. Very hard on the body and not controlling the cortisol levels, which you want to keep at a steady level every day. It forces the adrenal and pituitary glands to shut down and then start back up, instead of just not putting out as much over all.

If your vet is unfamiliar with vetroyl/trilostane, then definitely see a specialist or another vet, who is knowledgeable.

hugs,
Sharlene and Molly Muffin

[Chris&Ginger]

Thanks for the replies and info everyone! I had thought the advice from Vetsource and my vet were a little contradictory from what i had read from Dachra, but the Vetsource guy was a pharmacist and my vet, well is a vet (I'm a data analyst so I"m not exactly a clinical person). So i trusted them....maybe foolishly. The Vetsource guy said i could cut the capsules and if a little spilled out then that's ok. I told him it says on the package to not do this and to not touch the powder with human hands, but he said it is nothing to worry about. He did "qualify" his statement saying "well you could do this but you don't have to if you are not comfortable with it".....ack.

So, I think I am going to go ahead and bite the bullet and get a second opinion. I've read enough and you folks have provided enough resources that it seems my vet has no idea what they are doing. I'm going to schedule Ginger for another round of testing this week and see what the levels are and make them go through her chart with me as suggested. Then get an RX for 60mg caps instead of this 120 every-other-day stuff in the meantime.

She does seem to be reacting quite well now - her energy level has kind of leveled off so it is about the same for med and non-med days, and she is drinking ok on both days too, and has lost some weight. But i'm still worried about what this could be doing to her kidneys and if this is over-stressing her needlessly.

Thanks again for all of the help guys, I really appreciate it.

[molly muffin]

I am glad that you'll be doing a test, but it's going to be hard if you do an ACTH test to get an accurate reading. For instance, an ACTH should be done, 4 hours after the morning dose, but if you give 120 mg in the morning, I wonder if that won't get the cortisol way low, more than it really is on the other day and same problem if you do the test on a day you don't give it, would it be accurate for the day you are giving it. argghh..Maybe one of the others will have a better idea about that.

Don't just have them go Through the test with you, get copies of the test.

Then, being a data anaylist - you'll love this. Enter the test and the numbers into a spreadsheet for tracking and comparison purposes. You can manipulate those numbers all over the place.:D

Sharlene and Molly Muffin

[Chris&Ginger]

LOL - yep those numbers are going into a spreadsheet!

This is frustrating and I see your point about the ACTH test and the up and downs. That does it, I'm calling the vet and getting a script for 60's, no more screwing around with these 120's. I'm tired of banging my head against the wall - it's getting frustrating.

I"m also going to take those lab results to another vet, one who saw Ginger before we moved to a different part of town and see what they have to say. I'm afraid my trust in my vet has eroded pretty far at this point.

Thanks again for the support and info, it's good to get someone else's perspective on this stuff, it really helps!

-Chris & Ginger

[molly muffin]

Yay Chris! The thing that I bet everyone on this forum has learned is that to be armed with information is a powerful thing. You are Gingers advocate. Armed with test results and data spreadsheets and pure knowledge, you can make the best possible decisions.
I love it when that happens and confidence is gained. (having been there I speak from experience! LOL)

Sharlene and Molly Muffin