Re: Has anyone treated with 9-cis Retinoic Acid?
Do let us know what the specialist says tomorrow.
It might be worth a shot to try stopping the vetroyl to see if it is a cause and if the symptom will reverse. I don't know if it will or not, or even if there is a chance so I don't want to give you false hope, but it is probably what I would consider doing too after discussing with the specialist tomorrow, who might be able to give you some definitive answers as to cause.
Re: Has anyone treated with 9-cis Retinoic Acid?
Just returned from my vet. The appointment was early and to demonstrate the difference in Datsun's gate with the Trilostane I did not give him his med and was going to demonstrate while at the vet the changes following administration by giving him the med after the doctor saw him.
After viewing the video of him walking/dragging his rear legs post dosing taken earlier this week, he didn't need to see the demonstration in person. We're going to go off the Trilostane this weekend to see the changes with regard to Datsun's myopathy. Based on the outcome we'll determine the next course of action. We discussed several options, but again to be determined based on the outcome of this weekend.
Re: Has anyone treated with 9-cis Retinoic Acid?
Well I hope you see improvements! It would definitely give you a direction and since quality of life is everything, being mobile is a huge part of a dogs life, I'd rather have them happy and mobility than not. Even if it meant vetroyl wouldn't be in the cards as a possible medication.
let us know how it goes off the vetroyl and what happens.
Re: Has anyone treated with 9-cis Retinoic Acid?
I agree that quality of life is the gold standard; I know Datsun is relatively young and I too wish there were another treatment to try, even experimentally. I ask my IMS but got nothing in response that gave me encouragement. Please let us know how Datsun is doing and what you learn.
Re: Has anyone treated with 9-cis Retinoic Acid?
Hi again, Mitchell! We'd love to get an update on Datsun and your treatment decisions; hopefully your boy is doing better these days.
Also, I wanted to alert you that we've started a new thread about novel Cushing's treatments, including retinoic acid. If you have a chance to take a look, we'd love to hear about any additional info you've gleaned about that treatment. Specifically, I'm wondering whether 9-cis RA is harder to come by here in the U.S. than is 13-cis RA? Is that why you searched out the pharmacy in South America rather than trying to purchase here? Here's the link to our new thread:
http://www.k9cushings.com/forum/showthread.php?t=8551
Thanks in advance for any additional info you can provide!
Marianne
Re: Has anyone treated with 9-cis Retinoic Acid?
Hi Mitchell,
I fear that Datsun's myotonia is continuing and that may be why you haven't posted recently. I can only hope that he is doing better and that you and Datsun are hanging in there. I saw a Drecha power point from a recent Cushing's conference for vets where they posted a photo of a dog with mytonia but I don't believe they suggested alternative treatments. You might try contacting Dr. Dave Bruyette at https://www.veterinarydiagnosticinvestigation.com to see if he could offer you any treatment options. Anyway, thinking of you.
Carole
Re: Has anyone treated with 9-cis Retinoic Acid?
Hi 'All,
Datsun's myotonia has worsened to the point of him not being able to walk. The good news is that he still try's to walk by hopping/dragging with both hind legs locked in the extended position. Here's a youtube link for anyone who'd like to see what I mean...
Title: Datsun on March 21st while on Vetoryl
http://www.youtube.com/watch?v=Cp8HPhnXUIM
Title: Datsun on March 28th looking a little better walking after taken off Vetoryl temporarily...
http://www.youtube.com/watch?v=CbRGNDNAYDU
I had to take Datsun off the Vetoryl at least for a while, 5-weeks as he became unable to stand due to weakness from the lethargy caused by the Vetoryl. He was at a dosage of 15mg 2X daily when this occurred even though he wasn't stimming in the perfect clinical range. My Vet says his myotonia is as much a result of weakness from the Lethargy as it is the myotonia itself. At about 10 days off the Vetoryl the benefits were subsiding and his symptoms started back, polyurea, polydipsia, panting more etc. In the meanwhile, after taking 5-weeks off, I put him back on a very mild dose of Vetoryl, only 5 mg, 1X daily. This dosage is enough to lessen his most noticeable symptoms. I plan to keep him at this low dosage and do some blood chemistry after about 6-weeks. I've been in correspondence with Dr. Bruyette and there is nothing known in classical veterinary medicine that can help his cushing's myopathy/myotonia. Unfortunately I'm not located in CA where he could possibly be more help.
Re: Has anyone treated with 9-cis Retinoic Acid?
Well I'm sorry to hear that Datsun's myopathy/myotonia has gotten worse and there isn't a lot that modern medicine can do.
It does sound like his spirits are still good though in that he keeps trying to get around, even when the back legs don't want to work as they should.
Re: Has anyone treated with 9-cis Retinoic Acid?
Hi Mitchell,
I was thinking of you and Datsun and just checked your thread. How is Datsun doing? Is there any improvement since stopping the Vetoryl? I do wonder if talking with the vets at Drecha regarding the myotonia; I'm not suggesting that Vetoryl caused the condition but only that they might be willing to relay the experience of other owners. Thinking of you and Datsun...
Re: Has anyone treated with 9-cis Retinoic Acid?
What about getting him one of those carts that has the wheel at the bad to help his rear legs, while he pulls with his front legs? We've had others use those with success.