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My Rituximab experience for ME

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
... besides that there are 10+ clone drugs being made due to patents expiring. the costs are going to plummet over the next couple of years.

Do you have any references or articles for that?

I'm working on a project and that info would helpful. Thanks.
 

Justin30

Senior Member
Messages
1,065
@Justin30, I wouldn't call a response rate above 60% for "very few". Many people has been on and off Rituximab for years. I am not sure anyone can say it is too strong to use. We use way more potent drugs in less serious conditions.

Hey,

Based on what I have read there is an above 60% chance of response. More than half of them require maintenance doses of the drug.

Rutuximab is an extremely potent drug. Both for treating and causing Lymphoma. If I am not mistaken?

Most ME patients can be very sensitive to MEDs and this concerns me. I took a beta blocker and had to be rushed to the ER. I also had near death experiences with an SSRI.

I am unaware if the drug/rutux can be continued on a long term basis?

I am not trying to hate on rutuximab I just believe it to be for a subset of patients. We have a symptoms list that includes 80-90 symptoms in the CFS 2nd Addition book. And now with convincing overlap between EDs Syndrome, Dyautonomia, lyme, fm, etc. I think it is to soon to tell without a biomarker etc.

ME is a multisystem disease so if you wipe out all your B Cells and have several Co infections, Reactivations that are not monitored before and after treatment i see this as an area of concern and what drug can be used along side rutux? further endocrine, gastro, neuro abnormalities that may be missed etc. And not treated along side the rutux?

These are just my thoughts based on what I have read.

I honestly want it to work, i want the Drs to figure out this disease and have viable treatment options. I want to see stories of hope as it gives me hope.

I feel it is too soon to tell at this point.
 
Messages
2,087
These are just my thoughts based on what I have read.

I honestly want it to work, i want the Drs to figure out this disease and have viable treatment options. I want to see stories of hope as it gives me hope.

I feel it is too soon to tell at this point.

Have you read all the rtx threads here because most if not all your concerns have already been discussed.

It is too early to tell, that is why we are waiting for the phase 3 results from Norway.
 

funkyqueen

Senior Member
Messages
123
Location
South of France
Hi there !

(copy/paste from my answer to Rebecca's thread, " Rituxan's update" ) :

I am very happy, very very happy, Rebecca, that you have been able to qualify you for another round of Rtx !
I discovered this evening your posts, that one where you said that you had a relapses, and this one, where you said you're going better again, thanks to Ritux!
I am happy for you, and your post where you explained your relapse when B cells began to return brought me tears to the eyes!
I wish you to improve again and again and again!
It's great that you have no more need the tube to feed you, now :)

I discovered this evening too, your symptoms improved, and ...I smiled ... :)
For my part, it is not exactly all the sames symptoms improved /on the same order of importance, but I admit that it's disturbing to read you ... !!!
However, I understood that you had others autoimmune conditions in addition to M.E ... but not so much! (Nature has not been kind to you : - /, except for your sublime face, I did not believe your age, you're just superb!)


To give some news about my Rituximab's experience, I continue to answer to it, but the response's peak is (for now ???) behind me,i guess ... : - /.
I had a relapse phase in my response (not sure if you understood me, lol, it's already hard to express me in French, hehehe, so translate in English ... :p) ... So, I had a "response down", (perhaps better said), after my 5th infusion ,because I had bronchitis, that I ascribe to Ritux (knowing me as immunocompromised because (thanks !!!) to Ritux ,I am enormously careful to not fall ill (wearing FFP2 masks, liters of hydro-alcoholic gel, etc.).

It was horror for me to see the slow return of some (not all) improved symptoms by Ritux, when I got this bronchitis, which it took three months to cured (thank you immunosuppression, arfff : - /, but bronchitis is a knowed pretty common side effect of Rtx)
I received in late January my last infusion of a gram of Ritux provided by the protocol, and I feel better again ...

Lord, I can not wait 2018 that official studies on the effectiveness of Ritux in ME will be published ......it is soooooo long for us... :( :( :(

Like Rebecca, I am very uncomfortable, to come here to say that Ritux help me, as I know from personal experience, as i had envy a lot for example Dr. Maria Gjerpe, who received Ritux (and she is now cured (totally !!!), and my heart is broken, to the idea of hurting any of you, guys ...
But I thought that I had to come and give some news to tell you to keep hope, and even write again "yes, Rituximab can help ME patients, even severe" ...

Take care xxx
 
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Justin30

Senior Member
Messages
1,065
Have you read all the rtx threads here because most if not all your concerns have already been discussed.

It is too early to tell, that is why we are waiting for the phase 3 results from Norway.

No actually I have not read all threads...i just added my unput...most days i am to sick to write a read what i would like too....but i do my best.
 

morse27

Senior Member
Messages
123
Location
NORTH of FRANCE
@funkyqueen
It was horror for me to see the slow return of some (not all) improved symptoms by Ritux, when I got this bronchitis, which it took three months to cured (thank you immunosuppression, arfff : - /, but bronchitis is a knowed pretty common side effect of Rtx)
I received in late January my last infusion of a gram of Ritux provided by the protocol, and I feel better again ...

Lord, I can not wait 2018 that official studies on the effectiveness of Ritux in ME will be published ......it is soooooo long for us... :(:(:(

maria gjerpé experience is rare!
among the rituximab with ongoing studies on all global clinical trials in the world, less than 10% of the responders will know a total cure,

others will relapse
like me from the 4 th month and feel their symptoms return,
this problem is known in the most auto-immune diseases treated with rituximab, it is rare that this treatment is curative.

it will never be possible to take rituximab for life without putting his life in danger and our organs

you will all be very disappointed of future publications on CFS / ME with rituximab,

this therapy will can not be retained : very low rate of remission and the risk of significant adverse effects


Even ten years will be needed to find an effective and properly dosed treatment .
you are fortunate to retain hope

for Gulf war illness vet 1991 "research" has ceased after 25 years!
, they never wanted to work on the real cause of the disease,
the squalene MF59 adjuvant the vaccine against anthrax, thus survivors this genocide will succumb and in total oblivion of the American people, I will make use of its victims long associated with fibromyalgia or CFS / ME
voluntary medical error to cover médecisn that of the US military.
 
Messages
120
@funkyqueen I read somewhere in this thread that the main symptoms with no improvement for you was related to blood volume and POTS among other things. One of the researchers in the RituxME trials in Norway said that they are testing to see if Nitroglycerine will have an effect on the blood volume of ME patients. Many seem to have an effect.The treatment is relatively risk free, so maybe this would be something you could try for your remaining symptoms? Just a thought.
 

Justin30

Senior Member
Messages
1,065
Nitroglycerine...

If people would look back Dr Jay Golsteins work this was one of his most effective treatments for CFS/ME

Everyone with me say a prair to tonight for some more ME/CFS Research and funding.

To bad we didnt have it when Goldstein was still at work. I bet a mix of his methods and those of the Dr today would have made us well by now.
 

funkyqueen

Senior Member
Messages
123
Location
South of France
@funkyqueen I read somewhere in this thread that the main symptoms with no improvement for you was related to blood volume and POTS among other things. One of the researchers in the RituxME trials in Norway said that they are testing to see if Nitroglycerine will have an effect on the blood volume of ME patients. Many seem to have an effect.The treatment is relatively risk free, so maybe this would be something you could try for your remaining symptoms? Just a thought.


I had not written anywhere which symptoms are improved or not to me, for the reason that I mentioned in my first comment in this thread, but ... I can not say that the conclusion you're doing is totaly wrong ;)

I must also say that I was very very very severe in terms of POTS / OI / dysautonomias: I could not stand up for more than 0-4 min/ 24h, at the worst of my state.

So ,thank you for telling me about this Norwegian trial, I had never even heard of it, I'll go read about :thumbsup:
Oh my God, "Nitroglycerin",...:nervous: is this not an ingredient for making bombs ?!
Just the name is frightening .. But I'll go read on that, thank you Maria :)

Do you pls have some links ?
 
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Messages
120
Do you pls have some links ?

This was said in a presentation some weeks ago by doctor Hanne Thürmer, and unfortunately there are no written links yet. There is a written summary of the presentation available, but it is in Norwegian. I take it you don`t read that? Hopefully there will be more written content about this in the near future. Her stance on this was to go ahead and try if one wanted to. There had been seen relatively few side effects so far. Nitroglycerine is a well known and well used drug for heart patients. I will post if I see or hear something more about this! :)
 

deleder2k

Senior Member
Messages
1,129
It is literally the same thing. Their patent is about an oral depot form of isosorbide mononitrate. dr. Thürmer is speaking about nitrolingual spray, which works instant, but has a very short half-life. If the spray works, depot tablets could be interesting to try out.
 
Messages
120
@deleder2k Ok! It didn`t come up as the same thing when I googled the two names, so I guess I misunderstood. Had no idea there actually was anything written about this apart from the summary of the lecture. As I understood, at Notodden hospital at least, there isn`t a study on the use of Nitroglycerine as a drug for ME patients per se, but they use it to investigate about the blood volume in patients and what happens to it. But the doctor considered it to be both safe and promising and to go ahead and try if one wanted. Very interesting that there is actually a patent application for one form of this drug by F&M!
 

Justin30

Senior Member
Messages
1,065
The one thing that bothers me about Nitro is the blood volume issue and what impact that it will have. Seems like a short acting drug overall and may only be a bandaid solution.
 

funkyqueen

Senior Member
Messages
123
Location
South of France
Hi there !

Just to say that my B-cells returned, and with them ALL the symptoms of severe ME (Rituximab, had not totally healed me, but improved ALL symptoms, and even made some totally disappeared...)

I was moved from a nameless state of agony, to an acceptable state of survival.
I am now as extremely sick as i was before
I used the entire very little energy I had these recents weeks to try to obtain Ritux maintenance infusions in my country ... In vain.