Endogenous retorvirus and HIV drugs

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Alex123

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Joined
May 31, 2014
Messages
128
Reason
PALS
Diagnosis
05/2014
Country
US
State
California
City
Los Angeles
I have heard of a trial that is going to test a combination of drugs currently used to treat HIV on patients with ALS. These drugs are supposed to reduce retroviral activity. I think the drugs are going to be tested on people that do show such activity on a test. I was interested in the trial but I saw in the exclusion criteria that people who have had gastrostomy are not accepted.
It looks like the trial is not open for recruitment yet. As retroviral activity has been observed in people with ALS, I think this is promising and I hope they move fast (unlikely).
I wonder if there may be other ways to bypass this study and try. But it would only make sense if one has indication of retroviral activity, which probably there aren't many places that can test for it. Then there should be some doctor willing to prescribe the medication off-label. Also, O don't know how much these drugs cost, but I suspect they must be expensive and no insurance would pay for it if it is not FDA approved for ALS.
 
You are correct I think that insurance is unlikely to cover costs. You could check to see whether they are listed as requiring prior authorization on your insurance formulary.

I also doubt you are going to get anyone to prescribe them. Aside from any known side effects no one knows what if anything these drugs would do to an ALS patient. I know there is a feeling we have nothing to lose but there is always a chance the drugs would make us worse. Some time ago there was a trial of another antiviral and that is what happened. If only we had crystal balls to see what will happen! There are so many things that have looked like they should help us but have failed to do so!
 
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