Would you try Rituximab?

[Marky90]

With having CVID a primary immune deficiency, Sicca or Sjogrens (autoimmune) and unable to take IGG to balance out the CVID, the answer from me is nope. Actually, "no way." My rheumatologist would love for me to be on it, but having the reaction to IGG that I did, it's not going to happen and he is adamant about that, too. It could be a grenade for me. Plus, I have MCAS probably due to this creepy and crazy immune system that attacks everything.

I am not thoroughly convinced of it (ritux) anyway....at least not for helping everyone. Clearly, it doesn't do that. So, again....if only they could unravel all subsets of people and get to the bottom of it for all of us. But...that's asking a lot.

So, I will just keep going along and waiting for more research, more trials, more findings....over the DECADES....LOL. I remember when Ampligen was the holy grail that everyone wanted...I guess this is the next big thing. Wonder what will be next and will it be approved for CFS?

How is a significant response for two thirds not something to be exited about? this forum puzzles me sometimes

 

[Mary]

@Mary

Reading of some random web page with side effects doesn't say much about the risk for treating ME. Look up some meta studies on PubMed for R.A and see the incidence of side effects. We should leave this field to doctors that have worked with this drug. That knows the side effects. I think it is hard to fully understand how the drug works, potential side effects, etc. without having studied some medicine at all. It is complex. Very complex.

I am not sure what you mean about "tanks your B-cells". A minor decrease in IgG levels is common, but it usually has no impact on infections. If your IgG levels get too low (which is rare), you'll get an infusion of humane gammaglobulins. When looking up side effects, I don't think CLL is representative for ME treatment. Nothing is really, but I would guess that looking at some R.A studies would give you a clue of possible side effects.


I'm not a M.D, so this isn't really my table, but as I've mentioned earlier; read professor @Jonathan Edwards' posts on this.

I didn't quote a random web page. I copied information from the official package insert, what the manufacturer provides with the drug, the black box warning required by the FDA, and also from Simon's summary of the study everyone is talking about.

When I said "tanks your white cells" (not B cells), I was referring to the neutropenia referenced in the drug information provided by the manufacturer, which said it happens at least 25% of the time.

I don't want to debate this - there is no right or wrong answer whether or not to take it - it's a highly individual matter. So I'll sign off now --

 

[Misfit Toy]

@Marky90 -just because one is excited about this does not mean another would be. I have seen a lot of theories and thoughts about things over the years since I got sick in 1989 that never panned out.

Ampligen, this being a retrovirus, XMRV virus...I have seen all of it come and go...theories, thoughts on cures, what helps, etc. I am not going to be excited and I mean excited until I see it for awhile, talk to others who have done it, and it's published significantly over years that THIS TREATMENT IS CURING this condition......not during a trial but for YEARS.

What puzzles me about this forum...now that you mentioned it is why does one need validation? If you are for it, awesome, but if another isn't...who cares? Why does one need to defend their beliefs? Who cares....believe what you believe and vice versa.

If people are for it, I respect that and hope it helps them...I will support them.

We are different people with different bodies and different thought processes and beliefs. Some people turn their thought processes into a "religion" and they want everyone to jump on board.

I am not a religious person.

 

[Marky90]

@Marky90 -just because one is excited about this does not mean another would be. I have seen a lot of theories and thoughts about things over the years since I got sick in 1989 that never panned out.

Ampligen, this being a retrovirus, XMRV virus...I have seen all of it come and go...theories, thoughts on cures, what helps, etc. I am not going to be excited and I mean excited until I see it for awhile, talk to others who have done it, and it's published significantly over years that THIS TREATMENT IS CURING this condition......not during a trial but for YEARS.

What puzzles me about this forum...now that you mentioned it is why does one need validation? If you are for it, awesome, but if another isn't...who cares? Why does one need to defend their beliefs? Who cares....believe what you believe and vice versa.

If people are for it, I respect that and hope it helps them...I will support them.

We are different people with different bodies and different thought processes and beliefs. Some people turn their thought processes into a "religion" and they want everyone to jump on board.

I am not a religious person.

Haha ok, im religious because im convinced by scientific studies? Im not even gonna bother to discuss this.

 

[Aurator]

I'd have no hesitation agreeing to it, assuming someone else was paying.

I've given up counting the days since this hideous incubus of a disease made its home in my body, blighting everything I do or even try to do with its poisonous presence. If there's a 64% chance that Rituximab is an antidote to that poison and will give me my life back, I won't scruple about side-effects; the chances are that at their worst they wouldn't be more unbearable than having bad ME.

Unlike some, I've never been offered the chance to try any medical treatments for this illness; a single half hour consultation with a GET practitioner is all the NHS have ever put my way. Offering me Rituximab would be a bit like offering a starving man a two in three chance of winning three square meals a day for the rest of his life.

 

[Soundthealarm21]

Haha ok, im religious because im convinced by scientific studies? Im not even gonna bother to discuss this.

Let's at least be realistic and remember this trial was open label and without a control arm. Don't think it's time to get convinced yet, personally. Is it promising? Yes. But a study (the majority of the patients are the same ones from the first study as well) that is open label without a control is not convincing science. I'll hold back my hopes until I see the results from the phase iii trial.

 

[Gingergrrl]

I am close to bedridden and (at present) probably one of the most ill on PR but there is not a chance on earth I would try Rituxan.

I have experienced some of the most rare and harmful side effects from meds and treatments that no one can explain including pulmonary edema from one liter of IV saline. I don't think I would survive the amount of IV fluid required for Rituxan let alone what is in the fluid.

I also don't understand how if you have multiple active viruses, killing all the B cells is a good thing? I gotta agree with @halcyon and @Sidereal on this one. Am happy for those who try it but it is not for me and not sure how it could affect someone with severe MCAS and allergic reactions either?

 

[beaker]

How is a significant response for two thirds not something to be exited about? this forum puzzles me sometimes

I think for those who have been around long enough (29yrs for me) I have become a bit jaded. Been there done that. Heard too many times "this is going to work ". And there is also the fear factor. Fear of putting things in my body when I have had so many horrible reactions to meds. And Fear of getting my hopes up and having them crushed once more. That's a hard one .
And yet. Somehow I remain hopeful. If the stars aligned and my doctor and I decided this was a good thing for me I would do it. I would stick my neck ( or arm ;-) ) out again.

 

[Tammy]

No...............I wouldn't try Rituximab.

 

[daisybell]

With the right specialist with experience in Rituximab, then yes I would go for it.

 

[JAH]

I think for those who have been around long enough (29yrs for me) I have become a bit jaded. Been there done that. Heard too many times "this is going to work ". And there is also the fear factor. Fear of putting things in my body when I have had so many horrible reactions to meds. And Fear of getting my hopes up and having them crushed once more. That's a hard one .
And yet. Somehow I remain hopeful. If the stars aligned and my doctor and I decided this was a good thing for me I would do it. I would stick my neck ( or arm ;-) ) out again.

Even though I responded " hell yes" to this question, I'm really not that brave, and feel a lot like you. Been sick about the same length of time, and hurt severely by medical treatments time and again. It's just that I have zero quality of life - nothing. Housebound, in unrelenting physical suffering, no personal, or professional life, so putting the money issue aside (which I know is huge), hell yeah I'd do it. But I am like a wounded animal, and would be scared, but only of increasing my physical suffering. I've lost everything else.

 

[MeSci]

I totally agree. It is a valid claim. My point is that one can't compare side effects of a completely different drug and conclude based on that.

I have spoken to numerous doctors about CD20 depletion, and almost everyone say it is a pretty "soft" drug compared to other drugs used for other deliberating diseases. Since we don'r know what ME is, I think it is wise to be cautious, but if RTX works the way the researchers think I think the risk to benefit ratio is pretty clear. We would have to wait until phase 3 is published to be certain of the effect and side effects.

The drug only appears to have been around for 18 years. There are discoveries all the time about serious dangers from drugs that have been in use for longer than that. There is a huge amount of uncertainty.

Here is the 2014 FDA Drug Safety Communications page, for example.

I know that ME itself has been associated with long-term conditions, but I don't know of strong evidence that these are causal links, or that rituximab would reduce the risk of these conditions.

One can probably reduce the risk of at least some of these conditions through diet, supplements and/or perhaps some drugs that have been in very long-term use. I am very interested in the re-purposing of drugs, as drugs tend to have multiple effects. I think that many of us have found that drugs designed for one purpose are also good for others, and some doctors are happy to prescribe drugs 'off-label'. Not saying that any/many of them can provide a cure, but at least they have relatively-long-term safety info. Of course, using them for different purposes can sometimes alter the safety aspects.

I think that the phrase to bear in mind is 'out of the frying pan into the fire'. If I were very ill, I might try it. I remember my desperation to fix my facial disfigurement that arose from Bell's Palsy at the age of 5. I begged for an operation. It helped. But I wanted more, and asked for another op, which I knew was at an early development stage. It made things worse. Do I wish I had never had it done? In a way, very much so. But if I hadn't, I would always be wondering whether it would have helped.

I'm not trying to advise anyone to take or not take anything, just to provide info and opinion.

 

[MeSci]

Yes, well...that statement gives me no comfort or confidence.

I thought that ACE inhibitors were pretty soft drugs until they nearly killed me twice and put me in hospital, and no one suspected the drug as the cause, so I stayed on it for 7 years, suffering a fracture and substantial dental damage as a result, plus a worsening of ME and consequent further reduction in my tiny income.

Maybe one reason for my extreme caution now.

 

[MeSci]

I've never been warned about any potential side effect of any drug I've ever been prescribed and even when predictable side effects developed it was usually vehemently denied that they could possibly be due to the drug.

I have experienced the same. I reported a drug side-effect to my GP many years ago, and he just looked at the list of known side-effects, then said that it wasn't on the list so couldn't be due to the drug! He was supposed to report it.

I have sometimes been warned of side-effects, but have never experienced the ones I have been warned about. OTOH I have very often not been warned of side-effects, but have had significant or severe ones.

My local pharmacist called me aside for my annual prescription drug review, and asked me if I were taking desmopressin for muscle. I looked this up when I got home, and cannot find any reference to such use. (EDIT - I was - and am - taking desmopressin for polyuria - the usual reason for anyone taking it. It does not appear to have any effects on muscle.)

Pharmacy assistants, when I buy OTC drugs, habitually warn me about side-effects which are not known for the drug I am buying. A common error seems to be to warn me about taking a drug with hypertension, when the risk is in fact for people with hypotension.

 

[MeSci]

We should leave this field to doctors that have worked with this drug. That knows the side effects. I think it is hard to fully understand how the drug works, potential side effects, etc. without having studied some medicine at all. It is complex. Very complex.

In general I would trust research scientists more than doctors (if they are both, fine), but I would still want to scrutinise - or with my brain fog, read PR members' scrutinies - the research papers/trial reports pretty damned thoroughly. Pick through every word, as some may be understatements masking something serious or important, e.g. things like 'unexpected toxicity' and 'serious side effects', as @Mary and maybe others have suggested. What toxic effects are expected, and what are the definitions for the severity categories? Have patients been followed long-term, and for how long?

Also look for conflicts of interest. If scientists or doctors are being paid by the drug manufacturer to run the trial. Etc.

 

[DanME]

How is a significant response for two thirds not something to be exited about? this forum puzzles me sometimes

Yeah me, too! Two thirds is fantastic result. And one quarter of patients are so called super responders. Total remission. You get your life and physical strength back. First time ever in a study. RTX definitely helps a lot of us. And Fluge and Mella proved once again, that their results are consisting. I have no doubt, the Phase III trial will come to the same results. No severe infections occurred during treatment. All side effects had been manageable.

If someone knocked on my door today with an RTX bag, I would take it right in my flat. I want my life back. And here is a realistic chance.

 

[Sidereal]

And Fluge and Mella proved once again, that their results are consisting.

Actually, they haven't. Many of the patients who took part in this open label study are the same patients who took part in the phase II trial.

 

[msf]

Woah, hold your horses there Dan! 'Super responders' was Simon's phrase, Fluge and Mella were much more conservative. They have not made any claims about permanent remission either.

I'm not saying that the results aren't promising, but there is a danger of reading too much into them as well as too little.

 

[DanME]

Woah, hold your horses there Dan! 'Super responders' was Simon's phrase, Fluge and Mella were much more conservative. They have not made any claims about permanent remission either.

I'm not saying that the results aren't promising, but there is a danger of reading too much into them as well as too little.

I know, that super or mega responder is not a medical term (or is it?). Of course, they are conservative, they have to be careful in the minefield of ME research and politics. But I don't have to. It's kind of obvious, isn't it? If they describe somebody, who could do heavy sports 2 years after the last infusion, that's a result, we never had before in study. Also Maria Gerpje (who was part of this study), who could leave her room for one hour a day before RTX and works 12 hours a day now. Also the "kajak girl" from one of the Youtube vids about Bergen. Same story. Now, she can live her life. You could argue, that none of them had ME. But I very much doubt that. From the study and their stories.

I am not saying, that RTX is the solution for all of us. But for some us. That's quite clear to me.

 

[DanME]

Actually, they haven't. Many of the patients who took part in this open label study are the same patients who took part in the phase II trial.

Yes, 20 of 29, to be exact . But six of nine placebo patients of the older study responded this time to RTX, which is also two thirds.