My Rituximab experience for ME

[funkyqueen]

Hi there !

I hesitated a long time before posting this thread, but now that I have absolutely no doubts over I can finally share this with you guys :

I am under Rituximab protocol for ME ... and I answer to it !!

I got there is a little more than one month ago,my 4th infusion / 6, one gram of Ritux.

I will not go into details, nor will detail my symptoms improved for the reason that the large scale formal studies to prove the efficacy of Rituximab in ME are not yet validated ...
And of course, if those who have the chance to benefit from this protocol are beginning to publicly detail their improved symptoms , while studies are not yet published, some might use it against us, to challenge the validity of these studies, once they published it.

If there is some testimonies on the net of ME sufferers having followed this protocol and have not been improved, there are also the opposite (a little too, but there are).
So, I would contribute by this post to give hope to those who don't have more, like me a few months ago, and was beginning to seriously consider self euthanasia despite my desire, my passion for life.


So I will not go into details, but I can say that : if at Day + 6 months and half post Ritux (and 4 of 6 infusions) , if Rituximab not completely healed me (far from it), it is now clear to me that there has autoimmune damage in ME:

Indeed, I have a dozen improved symptoms, for not saying TOTALLY diseapered !!! A blessing ... Just a Miracle !!! And most are really the signature of an autoimmune reached ... and / or that fact that the hypothesis of Fluge and Mella regarding the achievement of the endothelium is based.


Ritux hasn't however (not yet ?? ) improved my worses symptoms : my extreme harrassement , my +++ cognitive impairment, and my +++ orthostatic intolerance . So I do not think I'm of those who will be cured forever and will return in complete remission with Ritux, may be because I'm severe and got it late? I do not know ... but I do not think it will heal me completely ... We shall see, there are still two infusions.)
Always it is that it is, and I answer it anyway, even if not on the symptoms that I preferred ... so the ME Research seems on the right end ,in my opinion.

I keep a diary, and it is fascinating to note that Rituximab can do for a PWME, on how long, how it improves symptom family ... Etc..I really would like to share with you, but for the above mentioned reason, I shall abstain in our interest to everyone, as long as the Phase III studies in Norway and UK ... and others will not be published.

I also wanted to tell you that I know a young PWME woman of my age, (but she is ill with ME since a little over two years, moderate disability) who she is having this Rituximab protocol too, and she also answer to it. Good, but it turns out she has two other autoimmune diseases (Sjogren Goujerot Syndrom - and another whose name escapes me just right now). I
I want to clarify that I did have no other autoimmune disease ,and I did not take ABSOLUTELY anything else (drugs) than rituximab until a week after the 4rd infusion, so I'm sure that it's it that has improved my symptoms


Thoughts and Courage to all

 

[msf]

I just want to say congratulations on your progress.

 

[Cheshire]

That's a really great news!
Congratulations

 

[Marky90]

Amazing!!

 

[Battery Muncher]

Thank you for sharing your experience! And well done on your progress

 

[leokitten]

@funkyqueen I'm very happy for you, your response to Rituximab gives us a lot of hope!

There are a lot of people here on PR that are completely skeptical of the autoimmune hypothesis of ME/CFS and the work of Fluge and Mella. While I'm sure there is a smaller subset of PWME that do not respond or get worse because their disease has different underlying etiology, I believe most will have a significant recovery or remission with this medication and the results of the RituxME RCT will change the world of ME/CFS forever.

Our lives are already complete hell every day even for us with milder ME... So I think most people will take the risk of trying this medication.

 

[alex3619]

Let me add something not being discussed. Lets presume the phase 3 trials finish with results we expect, then what happens to the non responders? Well, aside from more research, they have some serious ammunition. The medical world, and particularly a certain type of psych, were so badly wrong about those who responded to Rituximab. How do they know they are not wrong again ... maybe CFS and ME advocacy will finally have the ammunition to create real change.

@funkyqueen, if you could publish your diary in the future, or parts of it, once the cinical trials are over, I am sure many would find it inspirational. It would also help advocacy.

 

[leokitten]

Let me add something not being discussed. Lets presume the phase 3 trials finish with results we expect, then what happens to the non responders? Well, aside from more research, they have some serious ammunition. The medical world, and particularly a certain type of psych, were so badly wrong about those who responded to Rituximab. How do they know they are not wrong again ... maybe CFS and ME advocacy will finally have the ammunition to create real change.

I believe Fluge and Mella and/or Cambridge as part of their trials will be doing additional studies to understand why they don't respond. So I'm hopeful that there will be more insight on this front along with the results of the trial.

 

[jimells]

So, I would contribute by this post to give hope to those who don't have more, like me a few months ago, and was beginning to seriously consider self euthanasia despite my desire, my passion for life.

You have indeed given me a reason to hope that there may be a treatment before I can no longer tolerate living in hell.

And that is a really big gift. I thank you.

 

[worldbackwards]

Lets presume the phase 3 trials finish with results we expect, then what happens to the non responders?

They get thrown back to the psychs. You know it in your heart. I remember when XMRV was the coming thing and the first thing Wessely did was try to claim dominion over UK patients, who he felt were not covered by the US research.

The psychs will always he the first port of call if some patients' symptoms remain "unexplained". It won't matter that they've been wrong. When since did that ever matter?

 

[alex3619]

The psychs will always he the first port of call if some patients' symptoms remain "unexplained". It won't matter that they've been wrong. When since did that ever matter?

They will certainly claim it. However with MS there were atypical cases, and they are now taken seriously. This is not about changing the attitude or modus operandi of misguided psychs, this is about changing the attitude of most doctors, bureaucracy and the public.

Success stories like in this thread are one way of doing that.

 

[Vasha]

Really happy for you @funkyqueen - glad that you've had some positive response!

Vasha

 

[SOC]

While I'm sure there is a smaller subset of PWME that do not respond or get worse because their disease has different underlying etiology, I believe most will have a significant recovery or remission with this medication and the results of the RituxME RCT will change the world of ME/CFS forever.

While I hope you are right that many PWME will benefit from Rituximab, I also hope it will not be the end-all treatment for ME/CFS. At present there is something like a 33% non-responder rate. Add to that the fact that a fair number of us will not be able to take Ritux because we have contraindicating conditions, it is likely that more than 50% of us will not benefit from Ritux for one reason or another.

Rituximab contraindications (I've bolded some that are known to co-exist in a substantial number of PWME)

Resolved Hepatitis B, Relapse of Hepatitis B Infection Symptoms, Hypogammaglobulinemia, Hepatitis C, Progressive Disease in the White Matter of the Brain, Disease due to West Nile Virus, Parvovirus Infection, Angina, Abnormal Heart Rhythm, Herpes Simplex Infection, Disease caused by Cytomegalovirus Infection, Stomach or Intestine Blockage, Acute Kidney Disease, Kidney Disease, A Mother who is Producing Milk and Breastfeeding, Infection caused by a Fungus, Pneumonia caused by Pneumocystis Jirovecii Organism, Severe Infection, Increased Uric Acid due to Cancer Chemotherapy, Infection caused by the Varicella Zoster Virus, High Amount of Phosphate in the Blood, Low Amount of Calcium in the Blood, High Amount of Potassium in the Blood, A Rupture in the Wall of the Stomach or Intestine, Anemia, Decreased Blood Platelets, Decreased Neutrophils a Type of White Blood Cell

 

[heapsreal]

While I hope you are right that many PWME will benefit from Rituximab, I also hope it will not be the end-all treatment for ME/CFS. At present there is something like a 33% non-responder rate. Add to that the fact that a fair number of us will not be able to take Ritux because we have contraindicating conditions, it is likely that more than 50% of us will not benefit from Ritux for one reason or another.

Rituximab contraindications (I've bolded some that are known to co-exist in a substantial number of PWME)

Yep i have a few of those contraindications .
why im hoping something happens with things like ampligen and brindovir etc etc

 

[SOC]

Yep i have a few of those contraindications .
why im hoping something happens with things like ampligen and brindovir etc etc

Same here. I'm all for lots of money and effort being put into Ritux for the benefit of many PWME, but it's unlikely to do me, or my daughter probably, any good. Hopefully other things like ampligen and brindovir, as you say, will help the rest of us.

 

[alex3619]

This is in part why the researchers are looking at Ritux alternatives as well.

 

[heapsreal]

Anything come from dr kogelnek (spelling) combining rituximab and valcyte.

Some of these contraindictions for rituximab like certain infections or immune deficiencies , it could be possible to treat them prior or during rituximab treatment and avoid them?? I guess that's for future research .

 

[Bob]

Also, for those who do respond to rituximab, most don't experience a full remission, as far as I understand the data, and the improvements are not necessarily permanent. So it will not be a panacea for most of us, unfortunately. Also, clinical trials can often have better results than clinical practice, for various reasons, including because of the careful characterisation of participants in the trial. The general ME/CFS population will be more heterogeneous.

 

[leokitten]

While I hope you are right that many PWME will benefit from Rituximab, I also hope it will not be the end-all treatment for ME/CFS. At present there is something like a 33% non-responder rate. Add to that the fact that a fair number of us will not be able to take Ritux because we have contraindicating conditions, it is likely that more than 50% of us will not benefit from Ritux for one reason or another.

Rituximab contraindications (I've bolded some that are known to co-exist in a substantial number of PWME)

@Jonathan Edwards is it true that if you have positive IgG antibodies to CMV, HSV, PVB19, or VZV that you cannot take Rituximab?

That just doesn't seem right because these viruses are very common and that would basically rule out everyone, most people are IgG positive to at least one of those.

I think @SOC the text is possibly meaning that if you are currently undergoing an acute infection caused by the above viruses that you cannot take rituximab at that time?

 

[snowathlete]

Let me add something not being discussed. Lets presume the phase 3 trials finish with results we expect, then what happens to the non responders? Well, aside from more research, they have some serious ammunition. The medical world, and particularly a certain type of psych, were so badly wrong about those who responded to Rituximab. How do they know they are not wrong again ... maybe CFS and ME advocacy will finally have the ammunition to create real change.

@funkyqueen, if you could publish your diary in the future, or parts of it, once the cinical trials are over, I am sure many would find it inspirational. It would also help advocacy.

The other big benefit is that there will be many more advocates with energy and health than there are now. I know many people will want to get on with their lives and forget the disease if they can but I think there will be others who will recognise they are fortunate when others haven't been and will do whatever they can to help those who remain without treatment. I think it will make a big difference.