need advice, going broke

[noodles mom]

Hi, I have a mix breed stray I adopted a tear ago, only to find he had Cushing's. I believe it is possible he had been under a treatment plan before I got him, because at first he seemed "normal " but not long afterwards he displayed all the usual symptoms. Panting, thirst, urination , skin problems and ravenous appetite. Took him to a vet who gave him cortisone injections for skin, put him on a diet ,and wanted to prescribe doggy diet pills. Declined the diet pills but kept up on the injections. They seemed to help with the itching. Changed vets due to another unrelated issue, and was there diagnosed with Cushing's.
He has been on 70 mg veteroyl for a year. It "helps" but is so expensive. the vet wants endless testing and as far as I observe the dosage is to low, if anything at all. I would like to try lysoderm but she is only comfortable with vetroyl.
I am a single mom of 2 about to enter college, and support my mother.
$ 200 for meds, plus testing cost every 3 months has pushed me to the breaking point. I am looking to find a new vet who will offer me cheaper treatment options. otherwise I am left with no choice but to ... well you know. Can anyone advise me? What are the absolutely bare bones testing requirements? and what is the protocol for switching from vetroyl to lisoderm? Should he go off the veteroyl for a period? I do not have the records from my vet. I am afraid to ask, she got really snippy with me when I wanted to renew his meds last time without another of her 300$ tests. Like I said his symptoms are "barely" under control. He still will eat anything like he has never seen food. He needs more medication, if anything. I would like to call various vets in the area and enquire about test costs, but I am not sure which ones I should ask about. I am pretty sure I can buy the lisoderm cheaper too. What would be a normal dosage? He is 40.5lb currently.

Thanks

[StarDeb55]

Welcome to you & Noodles! First of all, let give you a big cyber hug for giving Noodles a good home. Now, to try to address some of your questions. I won't tackle a lot about trilostane as I have never used it. I have been lucky or unlucky enough to have taken care of 2 cushpups in about the past 12 years. What I will say is that trilo does tend to be more expensive initially as the dose will take some tweaking until you get it right. Every time the dose is tweaked, you have to have another ACTH monitoring test within about 2 weeks. Could you tell us how much Noodles weighs? I'm asking because if he is a small dog there is a way to save money on the stim tests by splitting the vials of cortrosyn that are used for the test, & freezing the remainder. The cortrosyn is the most expensive part of the test as it's the stimulating agent that is injected.

When it comes to switching to lysodren, there is usually a 30 day washout period where no drugs are given, & you need to see the return of strong symptoms. The normal protocol for lysodren is you have a loading or induction phase where the medicine is given 2x per day. The dose is calculated by weight, then split in half. Once you see a reduction is symptoms, then you must have an ACTH done to see where you are. The reduction in symptoms can be something as subtle as the dog who inhales his food in literally 30 seconds, now, will pause a moment from eating, & look around. Assuming that the ACTH that is done at this point is within range, you go to maintenance dosing which is usually given about 3x per week. It's the same dose as the loading dose, but broken out over the week, instead of giving it daily. You have to have another ACTH done at the 30 day mark with lysodren to make sure that the maintenance dose is keeping the cortisol within therapeutic range. If the 30 day test is good, you may be able to go as long as 6 months between tests depending on the vet, while some vets are a little more cautious, & want the follow-up testing done quarterly.

Hope this helps.

Debbie

[Squirt's Mom]

Hi and welcome to you and Noodles! :)

Wow...sounds like the first thing I would do in your shoes is find that new vet. ;) You pay for her time, expertise, and those test results and for her to get "snippy" is not very professional...nor does that lead me to think she will work with you as a team for Noodles and that is important with Cushing's. I am also a bit concerned about her understanding of Cushing's. If Noodles was tested while on or just after coming off the pred, the tests could well be inaccurate. Prednisone causes a form of Cushing's called Iatrogenic which is cured by weaning off the pred. It is not true Cushing's and does NOT require either Trilostane (Vetoryl) or Lysodren (Mitotane). So I have many questions about how the diagnosis was arrived at in the first place.

I'll let one of the Trilo parents determine if the dose is right or not...I always get confused with Trilo dosage. :rolleyes::o

Trilostane seems to be the more expensive med to use just from observation here because it seems to require more dose changes and with each change, you have to start the testing schedule all over at 10 -14 days after the change building to the 3-6 month span between testing. It is normal to need the ACTH at the minimum of every six months IF ALL SIGNS ARE CONTROLLED. If the signs become stronger again, the the ACTH needs to be done sooner.

Switching from one to the other requires a washout period with no treatment for a period of time. Depending on who you ask that period is from 2 weeks to 4 weeks; personally, I wouldn't feel comfortable with less than a 30 day washout. In addition, you want to see the signs back before starting the other treatment.

Can you tell us what signs Noodles was displaying before she was diagnosed with Cushing's? And what signs are you still seeing? Has she had an ultrasound? Does she have any other health issues that you know of? Is she on any other meds, herbs, or supplements? If so, what and what for? The more you can tell us the better we will be able to help. We LOVE details so don't worry about the length of your posts. ;)

Hugs,
Leslie and the gang

[noodles mom]

Noodle is 40.5 lbs. If we go off the vetroyl, He would be displaying full blown symptoms in less than a week. He has been on vetroyl for a year. Seems to me if it were going to stabilize him, it should have done so by now.

[labblab]

Hi from me, too! Just want to double-check: is Noodle still getting those cortisone injections? If not, how long ago did they stop?

Marianne

[lulusmom]

Hi and welcome to you and Noodle.

Like Leslie, I'd first like to thank you for giving Noodle a loving home and doing what you can to give him a good quality of life. I'm a rescuer so I love anybody who saves a life by adopting from a rescue or a shelter.

To keep my thoughts in order, I've typed my comments and questions below in blue.


Hi, I have a mix breed stray I adopted a tear ago, only to find he had Cushing's. I believe it is possible he had been under a treatment plan before I got him, because at first he seemed "normal " but not long afterwards he displayed all the usual symptoms.

Do you know how long the rescue had him? I ask because it's completely possible that he was dumped in a shelter by his owners who may not have been able to afford to take care of him. If the rescue had for less than a few months, this is entirely possible. Any rescue who would do something as despicable as not disclosing that a dog has such a serious disease should have there doors closed and if a 501(c)3, they need their non profit status revoked. Have you talked to rescue about this?

Panting, thirst, urination , skin problems and ravenous appetite. Took him to a vet who gave him cortisone injections for skin, put him on a diet ,and wanted to prescribe doggy diet pills. Declined the diet pills but kept up on the injections. They seemed to help with the itching. Changed vets due to another unrelated issue, and was there diagnosed with Cushing's.

I am assuming that all of these symptoms were observed before receiving cortisone injections right? If so, chances are really good that Noodles was already self medicating himself with his own natural steroid, cortisol so if the skin condition was caused by cushing's, I doubt that a cortisone would have helped and may have made things worse. Did you see improvements after the injection? What skin condition did your vet diagnose?

He has been on 70 mg veteroyl for a year. It "helps" but is so expensive. the vet wants endless testing and as far as I observe the dosage is to low, if anything at all.

Did Noodles start treatment with 70mg or was it gradually increased over time? Is he getting 70mg once a day or is it split in half and given 35mg in am and 35mg in pm? I have shared my life with two cushdogs, one of which is still with us. My two dogs treated with both lysodren and trilostane (active ingredient in Vetoryl) so I'm familiar with both. Based on what you've told us, I personally would not throw in the towel on Vetoryl just yet because I don't believe you've exhausted all avenues available to you. You mention that Noodles is better on the 70mg but you think the dose is too low. What symptoms are better and what symptoms are still bothersome? Are you giving him his dose with food? Are any symptoms worse at a certain time of day? If yes and if Noodles is getting one dose a day, it could be that he will need twice daily dosing to see a resolution of all symptoms. If that were to be the case, you could try splitting the 70mg in half and give am and pm. If your vet is okay with giving you a script, it might save you a lot of money if you get your meds from a veterinary pharmacy. I wouldn't use just any pharmacy but a number of members, including me, have had great experience with Diamondback Drugs in Scottsdale, AZ. They have a stellar reputation and they ship anywhere in the U.S. I am in So Cal and I get my meds in one to two days. You can contact them for pricing at (866) 578-4420.

The endless testing you mention is the acth simulation test which is necessary if you are going to continue to treat. As Debbie mentioned before, you can save money if your dog is under 50 lbs. For a dog Noodles size, you should be able to get at least two acth stimulation tests out of one vial of cortrosyn. Cortrosyn is the stimulating agent used and we call it liquid gold because it is this agent that drives the cost of a stim test. You only need to get your vet on board with following proper protocol for storing the remaining agent for a future test. If your vet is not familiar with this, you can provide him/her with the url (below) to instructions provided by Dr. Mark Peterson, a world renown and well published endocrinologist.

http://endocrinevet.blogspot.com/2012/03/how-to-dilute-and-store-cortrosyn-for.html

I would like to try lysoderm but she is only comfortable with vetroyl.
I am a single mom of 2 about to enter college, and support my mother.
$ 200 for meds, plus testing cost every 3 months has pushed me to the breaking point. I am looking to find a new vet who will offer me cheaper treatment options. otherwise I am left with no choice but to ... well you know.

Yes I know but we're not at that point right now so let's all put our heads together to see if we can get Noodles on the right track

Can anyone advise me? What are the absolutely bare bones testing requirements? and what is the protocol for switching from vetroyl to lisoderm? Should he go off the veteroyl for a period? I do not have the records from my vet. I am afraid to ask, she got really snippy with me when I wanted to renew his meds last time without another of her 300$ tests.

You paid for the tests and it is appropriate for your vet to give you copies. We've all been to an after hours er and it's good to have all of our dogs medical records in a folder for the er vet. Don't cow tow to a vet. You are Noodles only voice. I was going to say advocate but you have a whole lot more advocates for Noodles now. :D If you paid $300 for the last acth stim test, you should be able to cut that in half by splitting the cortrosyn vial. It's up to whatever vet you ultimately settle one.

Like I said his symptoms are "barely" under control. He still will eat anything like he has never seen food. He needs more medication, if anything. I would like to call various vets in the area and enquire about test costs, but I am not sure which ones I should ask about. I am pretty sure I can buy the lisoderm cheaper too. What would be a normal dosage? He is 40.5lb currently.

If it comes down to switching to Lysodren, we can answer all your questions and provide you with appropriate reading material so that you can prepare yourself before starting treatment.


Looking forward to hearing a lot more about your boy. The more information you can provide, the better able we can offer more meaningful feedback.

Glynda

[molly muffin]

Hello and welcome. Excellent advise from all the others. Putting our heads together is the best bet.
Tell your vet, you want copies of all lab results going back for as long as you have been going there, that you want to keep your own file to refresh memory of what is going on and that you'll want copies of all testing going forward too. Whether with this vet or not, you will want copies.

ACTH, LDDS and blood panels are the test most associated with Cushings.

Another possibility for cheaper Trilostane is to go through one of the compounding pharmacies. Several members here do that.

Basically I wanted to say hi and welcome. :)

hugs,
Sharlene and Molly Muffin

[mytil]

Hi and welcome from me too.

I will not repeat what the others have mentioned on the technical side, but yes, you own those records and any good vet would not object to it. In fact if you still feel like you are getting slack from the vet, try going in the front desk people and tell them to photocopy your records for you. In fact, call them up and ask them to give you the results of the last ACTH stim test as well as any others recently and post them here.

Also here is a link that may offer some help financially - http://www.k9cushings.com/forum/showthread.php?t=212.

In addition, as a last resort there is a new trend called crowd funding on the net - simply post your information and plea and ask for donations - you would be surprised what happens. I have never tried but I have seen so many from all walks of life.

Keep us posted
Terry

[noodles mom]

Hi , Thanks for all your kind wishes.
Yes , I am sure the steroid injections probably made the Cushings worse. I took noodle to the vet at first because he was very itchy, and gaining weight. The vet thought it was probably food allergy.
He was also thirsty and panting, but I don't think I mentioned that to the vet then. I did not realize it was significant at the time.
He only received a couple of injections and he had not had any for several months when he was correctly diagnosed by the 2nd vet.

The rescue only had him a few days.

He takes 60mg vetroyl in mornings and 10 at night. The 10 was an increase. Even though prices at the compounding pharmacy s are cheaper, They still are higher than lisoderm, and still out of my budget, especially if his dosage goes up again.

I really appreciate the tip on halving the testing medium.
I am going to call around and comparison shop vet testing charges. and hopefully between a lower test charge and 2 tests from one, I'll be able to lower test costs significantly.

Veteroyl however is another story. No generics available. I know where I can purchase drugs for next to nothing, but only if they are not brand.

[Squirt's Mom]

Veteroyl however is another story. No generics available. I know where I can purchase drugs for next to nothing, but only if they are not brand.

If you are talking about Trilostane, many here us that drug instead of Vetoryl. Vetoryl is the brand name, Trilostane is the compounded name...and yes, Trilo is often less expensive. However, there isn't another drug name for this - it's either Vetoryl or Trilostane, or you are talking about an altogether different drug. Both work the same way, the dose will stay the same, the risks are the same - nothing changes except the name and cost. Several here use Diamondback Drugs out of AZ for the Trilo.

I'm going to repeat the questions I asked earlier -

Did you get copies of the testing?

Can you tell us what signs Noodles was displaying before she was diagnosed with Cushing's?

And what signs are you still seeing?

Has she had an ultrasound?

Does she have any other health issues that you know of?

Is she on any other meds, herbs, or supplements? If so, what and what for?

Thanks,
Leslie and the gang

[labblab]

I just want to expand upon what Leslie has already told you about compounded trilostane. You are absolutely correct that there are currently no generic equivalents to brandname Vetoryl. Generic drugs are manufactured by large-scale companies and are FDA-approved, just as are the brandname originals. However, "trilostane" is the chemical that is the active ingredient in Vetoryl, and certain compounding pharmacies in the U.S. are privately preparing their own versions of "trilostane" for sale at discounted prices.

Compounded trilostane is not FDA-approved, and a few recent research studies have revealed concern about the consistency of the dosing in some compounded products. However, compounded trilostane is essential when a dog requires a dose that is unavailable in brandname Vetoryl, since compounders are able to prepare their products in any prescribed dose. And if the cost of brandname Vetoryl would otherwise make treatment impossible, then compounded trilostane can provide an option that would otherwise be unavailable even for dogs requiring conventional doses. So as Leslie and Glynda have both suggested, this may be an option that you will want to explore so as to be able to continue Noodle's treatment.

Marianne

[Maya]

Hi there! Compounded trilostane is really quite reasonably priced compared to Vetoryl. I used to order mine from Diamondback drugs. 60, 32mg capsules cost me about $45 including tax+postage.

Regards, Leah

[gummysmurf]

Hi there! I just had a comment about finding cheaper meds - I don't know how it compares to compounding as I'm not on real cushings meds yet, but my dog is on heart medication and it's waaay expensive through CVS.

Mexilitine: $70.00 a month
Sotilol: $30.00 a month

But much cheaper at Costco
Mexilitine: $30.00
Sotilol: $5.00

They also let you use this discount card even on pet meds, which I think is awesome! Of course, you have to pay a $50.00 membership fee with Costco, but in my case I made that money back with just one month of savings on Baxter's meds.

Teresa

[Maya]

The only thing is, correct me if I'm wrong, I don't think that Trilostane is available from CVS, Cosco, Wallgreens, Walmart etc . When I first came to live over here in the US, I went into practically every one of them in San Diego and none of them had even heard of it-it wasn't even on the computer. There were only two options left, to buy it online or off the vet, which was ridiculously expensive, by the way. My vet was charging almost double to what they were asking online!:mad:

[gummysmurf]

gosh I don't know - you could be right about the trilostane at Costco, I haven't had to get any yet. I'll ask the next time I'm there and give an update.

[glfprncs]

I have a friend with a Cush pup who gets her Vetoryl (30 mg. box) at Costco. If memory serves correctly, she was paying around $45 for a box of 30 doses of 30 mg.

[Skye]

something that has really helped me with medical expenses for my girl is the Care Credit card. Alot of veterinary places and pharmacy's accept it. AND they often have interest free for several months. :)

[jrepac]

I just want to expand upon what Leslie has already told you about compounded trilostane. You are absolutely correct that there are currently no generic equivalents to brandname Vetoryl. Generic drugs are manufactured by large-scale companies and are FDA-approved, just as are the brandname originals. However, "trilostane" is the chemical that is the active ingredient in Vetoryl, and certain compounding pharmacies in the U.S. are privately preparing their own versions of "trilostane" for sale at discounted prices.

Compounded trilostane is not FDA-approved, and a few recent research studies have revealed concern about the consistency of the dosing in some compounded products. However, compounded trilostane is essential when a dog requires a dose that is unavailable in brandname Vetoryl, since compounders are able to prepare their products in any prescribed dose. And if the cost of brandname Vetoryl would otherwise make treatment impossible, then compounded trilostane can provide an option that would otherwise be unavailable even for dogs requiring conventional doses. So as Leslie and Glynda have both suggested, this may be an option that you will want to explore so as to be able to continue Noodle's treatment.

Marianne

Not to be an alarmist about this, but Business Week magazine just had an article that covered the history of compounding pharmacies. It's a little dodgy and regulation is NOT the same as the FDA....which can be good and bad I suppose. It's an interesting read if you have the most recent issue (or it may have been last weeks). I'd say stick to places that are well known; many on this board have used Diamondback with good results, I believe.

[Nancylynn]

Ollie's box of 30 capsules 60 mg was $145 and change at Vet's. It's his first month and half dose to start.
Oh, COSTCO --- to use their in-store pharmacy, in US, you do not have to be a member. I didn't know they do pet meds!

[rainiebo]

Hi just wanted to let you know that petcarerx.com has the vetoryl for $45 a box if you are a member. If not a member, it is around $49 a box. I joined 2 years ago for $50 because my dog has so many medical problems. I only use Care Credit for emergencies. It is a credit card and does have interest charges. I had to use it for a liver tumor procedure that cost over $5,000. Sooo - it did come in handy for that. But you cannot transfer the six months interest free discount from vet to vet. Each vet's office has to set you up with their interest free period and I could not get the interest free period for the $5,000 so I now pay interest on that amount. Hope you find a solution that is just right for you and your cush pup.

[Squirt's Mom]

Just a note to let members know we haven't heard from noodlesmom for four years. We pray they are well and hope one day to hear from them again. Just fyi. ;)

For new members, you can look to the left of any post and see the date that post was created. It is very impressive you are reading these threads and I hope you continue to do so. There is much information to be gleaned from some of these older threads - a great educational source and an educated pet parent is the best defense of all so I highly commend your efforts! :cool::cool::cool: If you see something that prompts a question, feel free to ask about it in the Everything Else section or on your baby's own thread if it pertains to their case. Keep up the good work!

Hugs,
Leslie