Alex123
Distinguished member
- 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.
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.