Would you take Rituximab

[justy]

I.ve replied undecided for a number of reasons
1. Like dreambirdie i am very sensitive to supplements and medications. Steroids put me in bed with pneumonia for a year and SSRI'S took away my sanity for nearly 2. I have also reacted strongly to normal supplements including those not known to have side effects.
2.Like Sallyblooms i have been improving gradually and slowly with natural approaches. Today i was able to have a walk without my wheelchair and paly a game sitting up in a chair with my daughter for over an hour with no ill effects at all. Last year i coulodnt do either of these things.
3.I am concerned about the effect on my immune system. Although i think my illness does fit with an autoimmune theory (i have recently developed swollen joints and joint pain) i also have a fibrotic band in my lung and must avoid infections at all costs. Its likely that although i meet ALL criteria for M.E this one thing would rule me out.

I'm all for waiting to see iof a more targeted drug comes along, and i know many here think this will happen if the Fluge and Mella trials go well, but dont forget that these type of drugs are allready used in Lupus, rheumatoid arthritis, MS etc and no one is rushing to find them a safer drug. I'm not holding my breath.
On the other hand when i saw the Fluge and Mellas presentation on the DVD of the Invest In ME conference i literally cried and wanted to get straight on a plane to Norway!

Justy.

 

[Sallysblooms]

Wow Justy, congratulations! That is really good news!

 

[Tristen]

No way at this point without knowing the full combo of drugs necessary, ie, Ritux + AV's. I'm not concerned about Ritux being too harsh, rather I'm concerned that's it's inadequate by itself. Possibly busting B cells down helps, but maybe we also will be needing to hit that which had been released from hiding, else it may be only a temporary fix with a huge risk profile.

Another point for me is that it's much easier to make such a claim these days being in a milder phase of illness. 3 years ago I would have done anything.

Given the uneven success rate, the relapse rate, and the risk of taking drugs, would you take rituximab if an oncologist was willing to treat and you could afford it? Also, please discuss your answer.

 

[Nielk]

I find this thread very interesting. Not so much in WHAT the opinions are but, the explanations behind the choice.

 

[Sushi]

No way at this point without knowing the full combo of drugs necessary, ie, Ritux + AV's. I'm not concerned about Ritux being too harsh, rather I'm concerned that's it's inadequate by itself. Possibly busting B cells down helps, but maybe we also will be needing to hit that which had been released from hiding, else it may be only a temporary fix with a huge risk profile.

Another point for me is that it's much easier to make such a claim these days being in a milder phase of illness. 3 years ago I would have done anything.

I second everything Tristen said, and add that "whatever is infecting us" is likely hiding in more places than B cells and that our new B cells will most likely get re-infected--which would make Ritux a more or less continuous treatment.

This could make the toxicity more of a problem.

Sushi

 

[Esther12]

Right now, no. If it proves effective in the Norwegian studies (including the phase 3 trial), then yes.

Yeah - I'd not decide to take it based on only the evidence we have so far. Hopefully more positive studies would lead on to quite rapdily developing science, and a test to see which patients would benefit the most.

 

[Tia]

-YES! Bring it!

 

[barbc56]

No, not before there is more evidence that Rituximax not only works but the benefits outweigh any risks.
Barb C. :>)

 

[lansbergen]

No, I want something that eliminates all infected cells and leave alone the not infected cells.

I do not want to eliminate not infected memorycells.

 

[Tally]

I think I am at the point where I would accept the risk for any hope.
I will probably wait until one more research is done, either the one in the U.S. or the one in the Norway.

 

[jace]

Thanks everyone for talking about the reasons behind your different choices. It's interesting how many have their individual supplement protocols, like me, and feel they are improving, as I do (waves to dreambirdie and sallyblooms).

However I vote yes, if in a clinical trial. I now have two daughters exhibiting symptoms, and I really really want to help the science move along. Also, I'm no spring chicken, better me than a youngster to do the dangerous thing, if it is that.

Wow! Imagine! Waking up feeling well!!! The very thought brings tears to my eyes. But, yes, I know it's early days for Rituximab, and I am willing to take the risk.

 

[niall]

Good point, Nielk. That's another way to think about it -- is one willing to take the risk of getting worse?

Hi SOC, I am in my just starting my ninth month on Ampligen and must say that it is helping significantly as far as my tolerance of sustained activity. I wake up in the morning now and feel somewhat like a normal person. I still have all of my symptoms but they are less severe than before this treatment. I have been told that most patients have the best progress in the last four months of a full year on Ampligen and was advised not to take a drug "holiday" after the first six months of therapy.
I asked a doctor about Rituximab at Dr. Klimas' clinic yesterday and she said that this drug would not be suitable for me as I have low B cells. She did mention Famvir starting at a low dose and slowly increasing it when I am no longer receiving Ampligen.

 

[SOC]

Hi SOC, I am in my just starting my ninth month on Ampligen and must say that it is helping significantly as far as my tolerance of sustained activity. I wake up in the morning now and feel somewhat like a normal person. I still have all of my symptoms but they are less severe than before this treatment. I have been told that most patients have the best progress in the last four months of a full year on Ampligen and was advised not to take a drug "holiday" after the first six months of therapy.
I asked a doctor about Rituximab at Dr. Klimas' clinic yesterday and she said that this drug would not be suitable for me as I have low B cells. She did mention Famvir starting at a low dose and slowly increasing it when I am no longer receiving Ampligen.

Congratulations! I would SO love to get Ampligen. I've wanted to try it ever since I was diagnosed, but I don't live anywhere near a place that can prescribe and infuse it. I was incredibly disappointed when the FDA didn't approve Ampligen.

 

[determined]

Right now, I wouldn't take it. I have improved quite a bit with the methylation supplements and I'm nowhere near my low point. However, if for some reason I had a relapse and went back to the severe weakness/fatigue, I'd take it in a second. When I took chemotherapy for cancer, my symptoms improved greatly and I know rituximab would likely work in the same way.

 

[valentinelynx]

A chance to get my life back. Yes, I'd try it. With appropriate monitoring of course. I'm not much use now.

 

[Fred1234567]

Yes Yes please I want my life back...as soon as I can get it I want rituximab. I know it is not the perfect drug for ME and that researchers WILL find a better one one day BUT that is no good to me as I have progressively got worse with each relapse and once I am DEAD i am DEAD- yes people do die from ME and those of us that are progressively getting worse despite all the diet/rest..supplements oxygen and saline are at risk of death!! So bring on rituximab!!

 

[Fred1234567]

Clinical trial versus off label??? Makes no difference to the patient all the clinical trial does is protect the Dr's from medico legal issues!!!! Bring on health care - real biologically based health are for ME patients...

 

[Fred1234567]

Yes yes .....I am ready and waiting bring on the DRUGS!!!!! seriously if you were as sick as me you'd not want to wait either. Although i can understand if you are relatively Ok the risk may seem to high.

 

[WillowJ]

at this point I'd take rituxan if part of a clinical trial so that data was being gathered to help people (and yes, biologic markers being studied). There isn't enough information for me to be comfortable using it outside of clinical studies right now.

I'm not doing espeically well, and at this point there are a lot of things I'd try, if I had a doctor that supported that. (One at a time, so I can tell what is what.) I've made some important improvements in the last 2 years, but I'd really like to gain some function. I think this is promising for that, even if it ends up being a 'stopgap' treatment until we find something better (if I were well enough to work/got to school, I personally might be able to join the hunt for 'something better').

So that (my relatively ill health) does contribute to why I'd be interested in joining a study.

 

[Fred1234567]

It is so hard to know what to do. Rituximab has been described to me as hitting a walnut with a sledgehammer and yes it is not the perfect solution. But currently there is nothing better so depending on your level of health risk taking ... It is hard to know whether to take the risk of waiting or take the risk of rituximab or take the risk of waiting for a better option??