Would you choose Ampligen vs. Rituximab (or neither?)

[Gingergrrl]

I was very curious if you guys had the opportunity to try either Ampligen or Rituximab:

1) For free
2) In your own city so no travel was involved

Which one would you choose, and why, or would you choose neither? In my scenario they are both free and available in your own city so money/cost and ability to travel are removed as factors in the decision. I am curious based on clinical info or symptoms, etc.

I know my own answer but don't want it to bias the responses so will share it later. Thank you to anyone who responds.

 

[lansbergen]

Which one would you choose, and why, or would you choose neither? .

Neither

 

[Gingergrrl]

Thanks to all who voted so far (4 for Ampligen, 5 for Rituxan, and 2 for neither). If anyone is comfortable sharing their reason why, it would be very interesting to hear!

 

[Sushi]

I don't think enough is known about either to make a really informed decision.

 

[Gingergrrl]

I don't think enough is known about either to make a really informed decision.

I totally agree but am still curious for this point in time, with the info that we do have, which one people would choose if given the opportunity (or still choose neither?)

 

[geraldt52]

There are some big "ifs" in the premise, since neither is going to be free to me, and neither is going to be available in my city...but even if those things were true, I'm still reluctant to chance making myself even worse than I am...with what is currently known. So, neither, as of today.

Realistically, I think in the next couple of years we will know enough more to make a much better decision. I currently have higher hopes for Rituximab, so I'm specifically thinking of the unblinding of the Mella and Fluge study.

 

[Kati]

You are leaving an option behind. Both is my answer. And more.

 

[daisybell]

I answered Rituximab. I have thyroid antibodies and ANA antibodies, with two autoimmune conditions diagnosed alongside the ME. B cell depletion seems like the best fit for a treatment for me...

 

[Gingergrrl]

There are some big "ifs" in the premise, since neither is going to be free to me, and neither is going to be available in my city...but even if those things were true, I'm still reluctant to chance making myself even worse than I am...with what is currently known. So, neither, as of today.

Realistically, I think in the next couple of years we will know enough more to make a much better decision. I currently have higher hopes for Rituximab, so I'm specifically thinking of the unblinding of the Mella and Fluge study.

@geraldt52 I put huge "ifs" on purpose b/c otherwise the answers would focus on the cost and location/availability.

Your answer is similar to mine that at this point in time you would not chance either of them making you worse even if free and available. I wondered if I was the only one and now I know I am not!

But for me having MCAS and severe allergic reactions heavily weighs in and it is doubtful I would tolerate either med.

 

[Gingergrrl]

You are leaving an option behind. Both is my answer. And more.

Sorry and I left out "both" b/c I am curious which one people would pick if they could only choose one.

 

[heapsreal]

Ampligen for me as they say it improves nk function and my nk function is very low. I think being a responder to antivirals may also help with being a responder to ampligen with its antiviral properties .

Always ready to jump ship depending on where rresearch ends up.

 

[ahmo]

I also voted neither. My condiiton is nowhere as serious as your's, ginger, but I've now come to a reasonable equilibrium, and would not risk that by adding in a pharmaceutical. Historically I have bad (histaminic) reactions to most rx. For me, LDN has proven itself safe and effective. In addition to oxidative stress responses, I consider my illness to now reside in the mitochondria. And I've not heard of anything other than the recommendations for supporting mito health, that suggests to me that there's any fix for this.

 

[Gingergrrl]

Ampligen for me as they say it improves nk function and my nk function is very low. I think being a responder to antivirals may also help with being a responder to ampligen with its antiviral properties .

Always ready to jump ship depending on where rresearch ends up.

Right now my answer is neither but if I had to choose it would be Ampligen b/c of the low NK cells (but I was not a responder to anti virals) so I would be jumping ship with you once more info is out!

Am still unclear if I am in the subgroup who might respond to Rituxan. But I don't even think I could tolerate just the amount of pre-meds and saline.

 

[alex3619]

I have not answered the poll because I do not have a definitive answer. Ampligen is probably a great treatment for responders. So is Rituximab. Rituximab has the chance of full cure so far as we are currently aware, but Ampligen does not. On the other hand Ampligen side effects are well understood. While Rituximab side effects are also well understood this does not apply specifically to ME. We might have additional unforeseen complications.

Timing would alter my choice. Whichever I could get first is my guess. Otherwise I would probably want to try Rituximab for a year to see if I respond (presuming it passes the phase III trial as expected), then if I do not respond I would try Ampligen. However we need markers to be sure of response potential prior to trying either of these. It is possible that each works on a different subgroup, or an overlapping subgroup, or the same subgroup. We really really need to know which.

My best guess is that Rituximab responders will need treatments only for so long, at which point they will be in full remission. For some this might take years, for others it should be within six months.

Right now Ampligen is the well understood choice. Today, that would be the best option. In two years it may switch to Rituximab. It all depends on what the science reveals. Rituximab is so off label today that its use would never be approved in Australia for ME or CFS. Its a restricted treatment.

 

[Raines]

I know more about rituximab so I picked that one, but I'd have answered both if it was an option.

I'd volunteer to be a guienipig for most things with a reasonable scientific theory behind them.

 

[Gingergrrl]

@alex3619

I have not answered the poll because I do not have a definitive answer.

Totally understandable!

Ampligen is probably a great treatment for responders. So is Rituximab. Rituximab has the chance of full cure so far as we are currently aware, but Ampligen does not. On the other hand Ampligen side effects are well understood. While Rituximab side effects are also well understood this does not apply specifically to ME. We might have additional unforeseen complications.

Makes sense, too.

Timing would alter my choice. Whichever I could get first is my guess.

For me it would not have to do with timing vs. whichever one I think I could actually tolerate (from an allergic perspective) and whichever one I fit clinically into that "subgroup" so I have a better chance of being a responder.

Otherwise I would probably want to try Rituximab for a year to see if I respond (presuming it passes the phase III trial as expected), then if I do not respond I would try Ampligen.

Interesting!

However we need markers to be sure of response potential prior to trying either of these. It is possible that each works on a different subgroup, or an overlapping subgroup, or the same subgroup. We really really need to know which.

This is exactly the info I want but I know we are years away from getting it.

Right now Ampligen is the well understood choice. Today, that would be the best option. In two years it may switch to Rituximab. It all depends on what the science reveals. Rituximab is so off label today that its use would never be approved in Australia for ME or CFS. Its a restricted treatment.

It seems like Ampligen is not that well understood either (as far as which subgroups are responders) but I could be totally wrong about this.

 

[Gingergrrl]

I'd volunteer to be a guienipig for most things with a reasonable scientific theory behind them.

@Raines In theory I feel the same way but I have had so many obscure & bizarre reactions to meds that doctors tell me they have never seen before (including IV saline) that I can't risk it any more. Although I have several new things I will be trying in the upcoming months anyway so I am contradicting myself in the search to get better!

 

[alex3619]

Ampligen has been tested in study after study, for at least three decades now, and its a half century old drug, or at least its original formulation was. So its been around the block. Its even been tested here but the results were never published ... I think in part because they were not as good as found in the US trials but I do not have any data to back that up, only comments from local doctors.

 

[Gingergrrl]

Ampligen has been tested in study after study, for at least three decades now, and its a half century old drug, or at least its original formulation was. So its been around the block. Its even been tested here but the results were never published ... I think in part because they were not as good as found in the US trials but I do not have any data to back that up, only comments from local doctors.

I guess I did not realize how much Ampligen had been tested in that many studies for three decades! Sorry for dumb question but was Ampligen developed specifically for ME/CFS or did it already exist for another condition like Rituxan did? Do you think it will ever be approved for people to try in their own city or is it too expensive?

 

[alex3619]

Ampligen was originally a therapy in need of a disease. Its been tested for a range of infections, including I think HIV. I don't think it was very successful. The success in ME seems to range from absolute wow, I have a life back, all the way to why did I even bother!

So while Ampligen has been around in one form or another, I don't think its ever been in clinical use, just experimental use. What we have is a lot of data and a lot of anecdotal evidence from responders. That data seems to also show that Ampligen can improve exercise tolerance in ME.

I am not very well read on Ampligen though, I am sure there are others who have read more on this.