Re: FDA-approved medication for RSD ??

[Guest guest]

nancy,

If you are on medicare their is usually a prescription plan that is free through the state especially if your meds cost more then 400 a month. I would call your local ssdi office and tell them you want the # in your state. I didn't know about it until last month and I know that I will get it due to the fact my prescriptions come to 1600 a month. She can also apply for medicaid in your state..they will cover all scripts totally...even if not fda approved because the dr can say this is the only med that works and that she already tried the fda approved meds. Hope this helps...If you need more information let me know...Have a Happy Halloween...Hugs..GinnyElusive704@... wrote:

My dr told me that every treatment and medication is considered experimental when it comes to RSD..nothing is FDA approved to cure, help or manage RSD.

Thanks for the response, Ginny. In fact, Neurontin and Avinza have been approved by the FDA for RSD. Unfortunately, neither of those work for the Big Sis (she is the one with RSD). The issue we have is that since neither of those work, we have to come up with something specifically approved by the FDA for RSD in order to get them on an indigent basis directly from the drug manufacturer.

One that she has been taking -- and that has done a wonderful job with the RSD -- is Keppra. Given her rathers, she would be content to take Keppra forever. Unfortunately, she is on SSDI/Medicare (which means no prescription coverage, really), and Keppra is very spendy. In checking with the manufacturer of Keppra, we found out that while the manufacturer does have an indigent program whereby they provide the drugs free of charge, unfortunately that would only work for her if she had been prescribed the Keppra because she is epileptic (which she is not). The FDA has approved Keppra for epilepsy.

IF she wanted to take Neurontin (which she totally does not!!), we could probably get it through the manufacturer on an indigent basis.

And that is why I go back to my original question of whether anyone knows of anything that has been specifically approved by the FDA for RSD. (I'm also researching it to see what I can come up with. I'll be sure to share the information when/if I find it.)

Hope everyone is doing well.

Hugs,

(aka the Little Sis)