Is Anyone Else Scared of Rituxan?

[DanME]

Well, when one of those side effect is death, people justifiably get scared.

Sorry, but I feel compelled to ask this. Maybe you've addressed this before but is there any sort of conflict of interest that you should declare regarding Rituximab or the current trials?

Seems that the vast majority of your posts are about Rituxmab. You're always very defensive about it even though there hasn't been much conclusive proof regarding it's long term effectiveness in treating ME/CFS. You also seem to have a lot of inside information about the trials that doesn't really appear anywhere else online.

I know, in your world deleder and I are part of a big evil RTX conspiracy. Maybe sponsored by Roche (which refused to fund any ME trials so far, hmmm).

Seems reasonable, since we defend the ONLY known treatment so far, which ever significantly helped some ME patients in a proper randomised controlled and blinded trial. Have you actually seen a video with Maria Gerpje? She is fit, can work 15h a day. No symptoms anymore. Where did we get these kinds of results before?? Right, just nowhere.

And btw. Aspirin also kills people sometimes, Even pure or salty water can kill people. A perfectly safe drug doesn't exist in this world. All medicine is about weighing the risk against the benefits.

 

[deleder2k]

@deleder2k, Thanks for the clarification.

Are you trying any of the other interventions proposed on this forum and have any of them been beneficial in alleviating your symptoms? I seem to remember that you tried Freddd/Rich's methylation protocol but it didn't seem to work for you. If it's any consolation, it didn't benefit me much either. I seem to getting a moderate amount of relief from a combination of Clostridium butyricum, Turmeric/Curcumin and TUDCA. I've come to the conclusion that inflammation seems to be playing a big part in my condition. I doubt that it's the root cause but at least I can minimize some of the symptoms that I suffer from.

I have tried homeopathy, LDN, Turmeric/Curcumin, 5,000 mcg methylcobalamine injections, Carica Papaya, GET (with worsening), tried time (4 years), antibiotics, alcohol, tramadol, oxycodone, zopiclone, detoxing, diets:, non-gluten, non-sugar, non milk, non yeast, HTP-5, Gaba2, Zinc, Magnesium, High dose Omega 3, vitamin d, vitamin K2, and religion.

Never felt that anything have helped except for large amounts of alcohol (vasodilator).

Tramadol and oxycodone for pain, zopiclone for sleep have also helped.

 

[Misfit Toy]

I really would just like to know what exactly are we treating before we treat it. What is the disease? It's like shooting darts at a dart board with your eyes closed. For some, it is helped by Valcyte which shows there is infection going on. Or Valtrex.

To me, something that goes in and kills things or takes down aspects of the immune system can go one of two ways. For some, like Rebecca, sorry if I spelled the name wrong...she seems to be doing okay on it. For now.

But I look at my dad with chemo and my sister and of course I can't help but feel this way; I saw it, lived it, grieved it. Both of them died of cancer. What made their cancer spread? Chemo and Rituxan is a form of chemo, whether you want to believe that or not. It's right there in the write up about it. Used to treat lymphoma.

With my dad, the oncologist pulled him off of all meds because he had tumors growing all over his back from the chemo. The chemo actually killed him. It made the cancer spread. He looked like the elephant man, the tumors were all over his back. He could not sleep. So knowing that scares me, plus my family is riddled with cancer.

Having said that, I respect anyone wanting to try it and I would never dissuade anyone who wanted to do it. I am trying to say there is a reason to be skeptical and to not go into this with guns a blazing (for me.) It's not something to take lightly. And, people should respect that on here.

I just don't get people saying that they do not want to try Rituximab at all after reading a random web page where side effects are listed.

It's not a random webpage; it's pages, testimonials-....pages on the internet. And, it's many of us who have been sick for over 2 decades who have tried so many things and gotten worse. That's something to factor in also.

 

[Misfit Toy]

ps-didn't Ampligen help many? I seem to remember that. Whatever happened with that?

 

[deleder2k]

ps-didn't Ampligen help many? I seem to remember that. Whatever happened with that?

FDA Turns Down Chronic Fatigue Drug

 

[JPV]

Seems reasonable, since we defend the ONLY known treatment so far, which ever significantly helped some ME patients in a proper randomised controlled and blinded trial. Have you actually seen a video with Maria Gerpje? She is fit, can work 15h a day. No symptoms anymore. Where did we get these kinds of results before?? Right, just nowhere.

That's not really true. Many people on this forum have achieved remissions (sometimes only temporarily) using any number of proposed interventions. The problem, again, is dealing with subgroups. So many treatments that seem to work for one person may not work for others. This is one of the biggest problems. It makes self treatment a frustrating and, often times, futile effort.

And btw. Aspirin also kills people sometimes, Even pure or salty water can kill people. A perfectly safe drug doesn't exist in this world. All medicine is about weighing the risk against the benefits.

Rituximab may very well prove beneficial to certain subgroups. But to compare it's side effects to those of aspirin are a bit disingenuous. I'm sure that the deaths from aspirin are mostly related to overdoses.

That being said, if someone was completely bedridden, with ME/CFS, and they fit the profile as a viable candidate for treatment, I can see why it would make sense to pursue it. Really, what do you have to lose if your life is so negatively impacted that you can't engage in even the most basic activities. I'm not that bad off so the positives outweigh the potential negatives to me, not to mention the enormous costs involved since I don't have insurance.

But we're all really putting the cart before the horse here. I'm sure I'll have a much different opinion after the next round of trials is concluded and the information is made public. For now, it seems somewhat promising but I don't see it being THE magic bullet cure.

 

[Marky90]

All Deleder2k is saying is that if the phase 3 trials are positive, there is a big chance a subgroup will respond to using the drug. Would you try something that has a 1 to 10 000 chance of killing you, but giving you your life (what life) back? I know I would. Fecking easily.

 

[JPV]

I really would just like to know what exactly are we treating before we treat it. What is the disease? It's like shooting darts at a dart board with your eyes closed. For some, it is helped by Valcyte which shows there is infection going on. Or Valtrex.

ps-didn't Ampligen help many? I seem to remember that. Whatever happened with that?

Ampligen, Valcyte, Low Dose Naltrexone, Neurontin, Nitroglycerin... any number of drugs seemed to have helped various subgroups. Rituximab just sounds like more of the same. It's likely to help some but not all of us. The again, I'm not sure that there ever will be one mode of treatment that will work for all of us.

 

[Misfit Toy]

I seriously doubt that the FDA will approve Rituxan for use for CFS/ME. Could be wrong....but.

I am in agreement with Marky90, etc. If people are dying, on death's door, etc...I could see wanting to try it. I truly understand. I probably would to. Hell, I have tried everything else....why not try one more thing to go and "F" up my body!

Just kidding. : )

I agree @JPV, I think all of us have different conditions really. We are all helped by such different things.

 

[Marky90]

That's not really true. Many people on this forum have achieved remissions (sometimes only temporarily) using any number of proposed interventions. The problem, again, is dealing with subgroups. So many treatments that seem to work for one person may not work for others. This is one of the biggest problems. It makes self treatment a frustrating and, often times, futile effort.


Rituximab may very well prove beneficial to certain subgroups. But to compare it's side effects to those of aspirin are a bit disingenuous. I'm sure that the deaths per thousands from aspirin is magnitudes less than that of Rituximab.

That being said, if someone was completely bedridden, with ME/CFS, and they fit the profile as a viable candidate for treatment I can see why it would make sense to pursue it. Really, what do you have to lose if your life is so negatively impacted that you can't engage in even the most basic activities. I'm not that bad off so the positives outweigh the potential negatives to me, not to mention the enormous costs involved since I don't have insurance.

But we're all really putting the cart before the horse here. I'm sure I'll have a much different opinion after the next round of trials is concluded and the information is made public. For now, it seems somewhat promising but I don't see it being THE magic bullet cure.

I dont think anyone is proposing its a magic cure, because it isnt, only approx two thirds respond, and to different degrees. Its however a MAJOR step in the right direction. What goes on with the other third, well they are trying to find out

Yes other treatments work, but few are getting the science behind it as ritux is at the moment. Finally maybe we as patients can demand treatment on behalf of a well thought out scientific study, not on behalf of anecdotes and improvisation.

Edit: Of course - two thirds ATM, does not imply this will be the actual response percentage.

 

[Marky90]

Ampligen, Valcyte, Low Dose Naltrexone, Neurontin, Nitroglycerin... any number of drugs seemed to have helped various subgroups. Rituximab just sounds like more of the same. It's likely to help some but not all of us. The again, I'm not sure that there ever will be one mode of treatment that will work for all of us.

You are probably correct. What intrigues me is that a lot of those treatments are connected to the immune system, as is obviously Rituximab. Why does it have an effect? Well that jigsaw might slowly be coming together, finally!

 

[Rebecca2z]

To me, it's an absolute, "I'm dying, can't function at ALL" last resort.

I get taking it, I do.

I have serum sickness right now from Enbrel, a biologic, with black box warnings.

These meds freak me out.

That is exactly the words I spoke "I'm dying, can't function at ALL" I was not scared to try it all, I jumped at it! I begged my doctor to hurry up get the treatment lined up. If he thought for one second this could improve my crappy little life I wanted it asap. But would I have done this drug before I got this bad ? NO !

 

[JPV]

You are probably correct. What intrigues me is that a lot of those treatments are connected to the immune system, as is obviously Rituximab. Why does it have an effect? Well that jigsaw might slowly be coming together, finally!

I think it's an autoimmune issue. Some sort of chronic infection(s), or perhaps just an infection as a trigger event, seems to turn on the immune system's switch which stays on, for some unknown reason, and then goes into overdrive. This would seem to be the rational behind the purported effect of Rituximab and some of those other drugs.

Again, it seems to be a subset thing. I'm pretty sure my issues stem from allergic reactions and inflammation. Though the root cause may be shared in some oblique, mysterious way. Who knows.

 

[deleder2k]

I seriously doubt that the FDA will approve Rituxan for use for CFS/ME. Could be wrong....but.

It is premature to say that. if we're looking at a 2/3 major responds rate, no serious adverse effects. Many get back to their lives after years of pain and suffering. They also have included objective measures in the sub-study like the CPET trial, FMD-test, some other signaling test. They also equipped the participants with Sensewear bands.

Before the publish the study they could also know more about patients that are considered as likely responders or not due to information about CD's cells and B-memory cells.

I don't know the process how FDA approves medicines, but as far as I know it won't be a problem getting the hypothetical results listed earlier in this thread approved by the The Norwegian Medicines Agency. I don't know that it will automatically authorise the treatment schedule for the EMA.

 

[Marky90]

I think it's an autoimmune issue. Some sort of chronic infection(s), or perhaps just an infection as a trigger event, seems to turn on the immune system's switch which stays on, for some unknown reason, and then goes into overdrive. This would seem to be the rational behind the purported effect of Rituximab and some of those other drugs.

Yeah. To me it seems that a lot can be the trigger, and that the trigger will paint the path the disease takes. I didnt have a clear infectious trigger, and so my ME is not your typical ME, im just easily exhausted.

I find the idea that in a subgroup maybe the microglia is overactive/primed, interesting. And that the immune system some how adds to the problem.

Personally I expect the cause(s) to ME to be beautiful in their simplicity. I keep thinking it might be kind of like MS (attack on the myealin sheats). I know FLuge and Mella thinks maybe the endothelial cells might be under fire..

 

[JPV]

Personally I expect the cause(s) to ME to be beautiful in their simplicity.

I think it's from a combination of contemporary environmental toxins, pollution, pesticides, adulterated food supply, drugs such as antibiotics, soaps which kill beneficial bacteria, added stresses from our modern lifestyles and any number of other things that people were never subject to in the past. I'm guessing that those of us currently afflicted with this illness have weaker constitutions than most. We're kind of the "canaries in the coal mine". If my theory is correct, the wider general population will be more and more stricken with this condition as time goes on.

 

[Marky90]

I think it's from a combination of contemporary environmental toxins, pollution, pesticides, adulterated food supply, drugs such as antibiotics, soaps which kill beneficial bacteria, added stresses from our modern lifestyles and any number of other things that people were never subject to in the past. I'm guessing that those of us currently afflicted with this illness have weaker constitutions than most. We're kind of the "canaries in the coal mine". If my theory is correct, the wider general population will be more and more stricken with this condition as time goes on.

Amen.

 

[dannybex]

Seems reasonable, since we defend the ONLY known treatment so far, which ever significantly helped some ME patients in a proper randomised controlled and blinded trial. Have you actually seen a video with Maria Gerpje? She is fit, can work 15h a day. No symptoms anymore. Where did we get these kinds of results before?? Right, just nowhere.

And btw. Aspirin also kills people sometimes, Even pure or salty water can kill people. A perfectly safe drug doesn't exist in this world. All medicine is about weighing the risk against the benefits.

With all due respect, right now there are many more people who have recovered (or as some might say, gone into remission) using other protocols (and usually multiple protocols over a period of years) than those who have recovered using RTX.

I know a half dozen from my own local support group who are back at work and have been since 2008-2009 (one is now retired). Several of them had milder cases, but as I've posted (to golf claps) a half dozen times before, one was sick for sixteen years, and the other was sick for 17 years.

During that 17 year period she was housebound for seven years, bedridden for 2 years (they later found mold in that apartment), and at one point her concentration was so poor she couldn't remember who she was talking to on the phone the second they stopped speaking. Yet she recovered completely, went back to school at agee 43 and has been well since 2009.

Some of them used some drugs from time to time like antibiotics, antifungals, antiparasiticals, but I can't think of a single one that didn't also use multiple forms of nutritional support, whether it was vitamins, minerals, amino acids, herbs, different types of probiotics (often rotated daily), not to mention dietary (including food intolerances and allergies) and 'lifestyle' changes. In hindsight it seems like overall the main focus was on natural remedies to rebuild the body, get the lymph flowing properly, restore gut function and detoxify pollutants, mold, and heavy metals.

There are people on this forum who have also recovered or gotten to 80% remission and have gone on with their lives. They're not here anymore because they have their lives back. Others have improved to a lesser but still substantial degree, but many of those were at their wits end when they thought nothing would save them except antiretrovirals a few years ago.

I understand why most patients can't see going this more 'natural' route, as it is very complicated and complex, and requires a lot of testing and a lot of $$$ and help in order to turn things around. Many of us have no income and are on medicaid or medicare so there's only so much we can do.

But that doesn't mean these things haven't worked for other people, no matter how 'woo' they may seem to some.

 

[dannybex]

Personally I expect the cause(s) to ME to be beautiful in their simplicity. I keep thinking it might be kind of like MS (attack on the myealin sheats). I know FLuge and Mella thinks maybe the endothelial cells might be under fire..

I guess I don't understand what you mean by these illnesses being 'beautiful in their simplicity'.

My mother had Parkinson's, and my dad used pesticides and fungicides all the time in the garden (he died very young at age 63). Our neighbor across the street also developed Parkinson's, and her husband also used a lot of pesticides and chemicals in their yard, and he also died several years before she did. To my knowledge, no one else in the neighborhood developed Parkinson's.

There are multiple studies showing a connection between environmental pollutants and diseases like MS, Alzheimer's, Parkinson's, etc. Here's just one:

http://www.ncbi.nlm.nih.gov/pubmed/21601587

Washington state has the highest rate of MS in the WORLD.

http://www.seattlemag.com/article/lifestyle/health/washington-hotbed-three-dangerous-diseases

No one knows for sure, but some have suggested it may be connected to radiation fallout from the Hanford Nuclear Reservation in Eastern Washington State:

https://www.aarst.org/proceedings/2004/2004_04_Linkage_Multiple_Sclerosis_and_Ionizing_Radiation.pdf

Lucky me, I live in Washington state.

 

[JPV]

I guess I don't understand what you mean by these illnesses being 'beautiful in their simplicity'.

I don't think he meant to be dismissive about it. I took it as him saying that the solution may turn out to be something simple that has just been overlooked all these years.