Rituximab for severe ME. Should i try?

[NL93]

Might it be worth trying to get some decent treatment for your POTS? Before trying something which is arguably quite extreme in your fragile state. I don't speak from experience due to unhelpful drs, but i've heard of some people having huge improvements in functioning after getting the right mix of meds for POTS/OI.

Yes, Already tried a few things for that, with minimal results.

 

[Gingergrrl]

Might it be worth trying to get some decent treatment for your POTS? Before trying something which is arguably quite extreme in your fragile state. I don't speak from experience due to unhelpful drs, but i've heard of some people having huge improvements in functioning after getting the right mix of meds for POTS/OI.

@Apple, I apologize for the confusion and was not sure if you were addressing this question to me or to the original poster. In case it's not me, I don't want to respond further re: POTS/OI treatment!

ETA: Sorry I read further back and think it was for the OP so just ignore this.

 

[Aerose91]

I am under treatment with Rituxan since December 2014 and I received 6 doses of 1 gram, not for ME / CFS but for GULF WAR SYNDROM after immunization with adjuvant squalene with Pandemrix GSK. I have serious side effects for two months and I do not know if I would still be living in three months! . Although rituximab enters the term bio-therapies, it remains as harmful to the immune system that given any chemotherapy for cancer. I warn that some of us in a variable time develop severe diseases: autoimmune or cancer. Medical information is available on the web

Hi morse. You say you have Gulf War Syndrome. Im assuming you served in the Persian gulf in 91, no? May i ask how you contracted the illness? Were you near any oil fields?

 

[morse27]

Good evening @Aerose91 ,

I contracted the disease Gulf war syndrom of soldiers of first gulf war 1991 in exactly the same way as these soldiers: US, UK, Australian, canadian.

I'm not a soldier, I am a civilian that triggered this terrible disease as many civilians in the worldin winter 2009, after a single shot of a vaccine that contain a special adjuvant of immunity particular the "squalene"! used in my Pandemrix vaccine and in the vaccine against anthrax "vaccine A" for soldiers before desert storm operation.

All veterans of gulf 1991 are informed of this genocide, I am responsible for myself!

this Molecule C30H50 is identical in chemical composition than exist in humans (10% of the human body is composed, much part are in the brain and spinal cord) .

GWS is totally different from ME / CFS in severity (stronger) .100% of GWS victims are very severely ill

I was treated at OMI, montain view with 6 courses doses of Rituxan for more 1 year,
has improved some problems,
but worsened my health

you have the chance to be many patients with ME / CFS in the world
it will be interested laboratories to developt a treatment for this disease,

we are with GWS at least 150 000 people in the world ! ,
so no cure or research hope for treatment,
35 soldiers who have this disease commit suicide every day in usa !!

http://www.whiteoutpress.com/articles/2015/q2/22-veteran-suicides-day-actually-35-day/

US government has kill his soldiers with this adjuvant

GWS is even worse than EM several form,
the soldiers are accustomed to undergoing any injury, are brave ..... but with this disease only death is the answer,

my friend Mathieu of Quebec also had the disease caused by this vaccine H1N1avec squalene,
he preferred to commit suicide late 2014 , because he saw every day differences between his illness and ME friends !

for francophone a link of me in a movie recording in january 2015
a mistake, at this time a woman held me that I was suffering from EM !
and I could not be believe when I saw his memory capacity far superior to mine! and significant differences in the severity of GWS / ME the symptoms.
in fact OMI explain me i have not bio markers of ME but all of soldiers ,

you are lucky !! just some years to wait for you

http://www.agenceinfolibre.fr/webserie-sur-la-vaccination-3-entretien-avec-yvon-cauchois/

 

[Mariah]

I would think about the risks and strongly consider waiting till we have more data. I am in contact with a lot of people who are going through the Rituxan treatment as we speak. Many have become very ill, and so far few have responded. Some of course experienced no worsening, but there is a considerable risk involved in my opinion when I look at how many I know have become worse. People have gone from functioning in a job to being bedridden. If it`s transient or not remains to be seen, but it has gone on for months so far. Rituxan will be the answer for some, certainly not for all.

 

[NL93]

@Mariah That's horrible. Are these people following the rituximab treatment in Norway?

I have already dicided that right now i'm just too sick to gamble with this. One more relapse, and i will be completely bedridden and depending on care. That would be my worst nightmare (seriously, i have nightmares about this) and i just can't take that risk.

My treatment plan for now is just the good old aggresive rest, pacing, and eating healthy thing. I seem to be very very slowly improving with that. Hopefully in a few years we will have better options

 

[Mariah]

@NL93 Yes, they are. And I do think you are making the right decision for now. At least wait till health care covers it and they also have the responsibility if something goes awry. There are a lot of problems with the way the Kolibri clinic handles this responsibility and handles the care of the people who, at least for the time being, are worse. I think the drug will be right for some, and I am not trying to paint an alltogether black picture of the treatment itself. Some have improved, and with no side effects or worsening. But so far, not knowing all the mechanisms involved in this disease, it sure is a gamble trying this and going the experimental route. I am just opposed to some always trivialising the risks and not being willing to listen to any critical input at all. We can`t know everything from a small study, and even with the studies, we don`t know everything about this disease. Therefore it is intellectually dishonest to dismiss every voice that urges carefullness. They must know something we don`t know then.

 

[TiredSam]

I have already dicided that right now i'm just too sick to gamble with this.

I was just thinking I'm too healthy to gamble with this. I know how lucky I am "only" having mild ME, way to much to lose. I don't want to be kicking myself because I was impatient.

My treatment plan for now is just the good old aggresive rest, pacing, and eating healthy thing. I seem to be very very slowly improving with that. Hopefully in a few years we will have better options

Yup.

Pardon my cloudy memory and not being bothered to look it up, but hasn't Carmen Scheibenbogen recently tried to develop a test to identify those who are most likely to respond well to Rituximab? I'd like to know I'm in that group before I risk what's left of my health.

 

[BurnA]

At least wait till health care covers it and they also have the responsibility if something goes awry. There are a lot of problems with the way the Kolibri clinic handles this responsibility and handles the care of the people who, at least for the time being, are worse

From a financial point of view this makes sense if insurance might cover it in the future. However, in terms of if you get a worsening of symptoms, which obviously nobody wants, is it not always up to the patient to decide the risks ? In terms of responsibility where does it lie ?

You say, so far few have responded, are you only including those past 6 months treatment or everyone who hasn't responded? Just trying to quantify what very few means . Tks.

 

[BurnA]

I was just thinking I'm too healthy to gamble with this. I know how lucky I am "only" having mild ME, way to much to lose. I don't want to be kicking myself because I was impatient.

I'm in the same boat. But I can't help feeling that we will have to decide before science has the answers.

 

[Mariah]

@BurnA It is up to the patient to decide whether or not to have a treatment done if they are fully informed about the risks and benefits from said treatment. However, the provider also have a responsibility to inform about these AND to take care of, treat and follow up with patients who experience side effects or a worsening of symptoms. Many patients feel that Kolibri does not do this, but in stead feel left to themselves with a tremendous amount of symptoms and pain. They don't feel that they are being taken seriously. There must be about 70-100 patients there now from all around the world. For one doctor, all in the same time period. The responsibility of the clinic cannot be met in my opinion.

I do understand you. Nobody wants to get worse. And we all have a lot of hope in this treatment. But if there is a chance one can get worse with this treatment, one may want to think twice before trying. Some might try anyway, and that is understandable. But I have experienced myself that when I think it can't get any worse, it certainly can hehe. So it's best to have that in mind also.

When I say few have responded this is what I refer to: I am in contact with about 20 people. They are all about 6 months in, a few about a month more and a few about a month less. From these so far 3 are possible responders. More than half have had a worsening of symptoms. Some more and longer than others of course. I hope there will be more responders among these. But the studies so far have shown that most people with a good respons, responded before 6 months.

 

[NL93]

@BurnA
When I say few have responded this is what I refer to: I am in contact with about 20 people. They are all about 6 months in, a few about a month more and a few about a month less. From these so far 3 are possible responders. More than half have had a worsening of symptoms. Some more and longer than others of course. I hope there will be more responders among these. But the studies so far have shown that most people with a good respons, responded before 6 months.

Interesting. I believe there was a German doctor that treated 10 ME patients with rituximab , of which 8 had no response, and 2 relapsed severely. No improvements.
The vast majority of people reporting on this forum are not having great results with it either.
And Whitney Dafoe tried this appearantly, and he thought it made him worse.
Of course all of this does not proof or disproof anything, but it doesn't look good.

The only impressive remissions i heard of, are from Fluge&Mella's patients. I really wonder what is so different with their patients compared to all the people elsewhere who don't seem to respond so well.

I guess we'll know more in 2018. Such a long wait when you're ill right now

 

[Kati]

Interesting. I believe there was a German doctor that treated 10 ME patients with rituximab , of which 8 had no response, and 2 relapsed severely. No improvements.
The vast majority of people reporting on this forum are not having great results with it either.
And Whitney Dafoe tried this appearantly, and he thought it made him worse.
Of course all of this does not proof or disproof anything, but it doesn't look good.

The only impressive remissions i heard of, are from Fluge&Mella's patients. I really wonder what is so different with their patients compared to all the people elsewhere who don't seem to respond so well.

I guess we'll know more in 2018. Such a long wait when you're ill right now

I think more needs to be known about biomarkers, subsets and precise pathology of this or these illnesses. The premise of trying Rituximab is from patients with ME getting treated for their cancers and experienced remission of their ME symptoms while on lymphoma treatments. Rituximab was part of a cocktail drug these patients had received.

We so desperately need science, money and more scientists tackling the problem. The technology we have in 2016 can take us in a path of discovery. We need commitment from government agencies.

 

[Mariah]

@NL93 I haven't actually read many posts on this forum about trying Rituximab, and I am also of the opinion that the few I found told of varied results. Some had a response, some not. Very unfortunate if it made a very sick person sicker. I do know of a Norwegian girl who went to Kogelnik to get treated before Kolibri offered, and she got well, but she isn't on this forum though.

Patients outside clinical trials will always be a more heterogenous group than those at clinical trials, but there shouldn't be this much of a gap in responses. Guess we will just have to wait for 2018 even though it's tough waiting like this. Preferably there should be a replication of the studies in other countries to see if the results are valid. The problem with this drug is you have to wait for such a long time before you can say for certain if there is a response or not. Who knows, maybe it's just a coincidence that we have only heard of majority not responding. But I do think people should be aware in any case that you can get worse from this and that it is a gamble, response aside.

 

[Freddy]

@BurnA

When I say few have responded this is what I refer to: I am in contact with about 20 people. They are all about 6 months in, a few about a month more and a few about a month less. From these so far 3 are possible responders. More than half have had a worsening of symptoms. Some more and longer than others of course. I hope there will be more responders among these. But the studies so far have shown that most people with a good respons, responded before 6 months.

Hi @Mariah ,
thanks for sharing your information, although I prefer to hear the more positive results.
I was wondering if "your" 20 people were from the private clinic or the RituxME trial?

 

[Mariah]

@Freddy They are being privately treated. I would also prefer it to be more. I still hope there will be more responders among the people I know . Or at least that it is a coincidence and that I have come across a cluster of non-responders. It would be great to have more information about who is a potential responder and who is not so we would know who would benefit from going through the risks of taking this drug.

 

[Freddy]

@Mariah ,
tx again!
I was kind of hoping that it was RituxME. In this case 50% non responders are to be expected by construction

 

[Mariah]

@Freddy No problem . Hoping the numbers will go up! If just for some of them to be relieved of their increase in symptom intensity. I of course hope the research at Haukeland are on the right track, and I do believe they are, but as we know, in larger studies and replications, numbers aren`t always as good as in the smaller, former ones. More side effects are often also registered. ME is a particular disease in that almost anything, including drugs as Rituximab, could cause a relapse or a big increase in symptoms/disease progression. I am worried that this may not always be registered as side effects since the disease itself is so unstable. But I hope they will pay close attention to this in the studies that are taking place. In the "end" I am sure there will be many options of drugs that one can try to see what fits best. It`s just a damn long wait for more and more research..

 

[Robin123]

A couple of corrections:

1. rituximab is not a chemotheraphy, it is a monoclonal antibody.
2. There is not evidence of people dying due to rtx-treatmen alone, unless they already are old, weak from cancer or other serious diseases, or on multiple immunosuppressive drugs.
3. There is not an increased risk for cancer in RA-patients taking rtx, and so probably not in ME-patients either.

Marky90 how did you reach so many infusions? I started 5th of March. Then you had not started treatment. After 2 months I am starting to feel big changes. I am not as stiff. I can think! I am starting to be back to normal. I feel like my life is coming back! I can lift things... and now it feels light!

I was doing some wood in my garden. Everyone got shocked after they did see all that wood! I have never done up so much wood in so short time in my whole lifetime! It is such a fucking good feeling! I can live again! Ohhh.. shit! What to do? In a couple of days I go to Amsterdam! I will smoke a big joint and live in a canalboat! I think I soon have to begin working again... Hallalujah!!! God is great!!! I am so proud of Jørgen Jelstad... in fact a relative. Living 1 km. from me! He is the guy! I will name my next kid after him... No I can buy a dog! I will by a schæfer... oohhhhh... I never thought this would happen! but it did!

 

[Gingergrrl]

Rituximab does not dal with B cells that have turned into mature plasma cells and settled in marrow, no. So you have to wait for those to all die off. Autoantibody secreting plasma cells may be shorter lived and only reach the spleen but this gets a bit complicated and we do not know the detail.

@Jonathan Edwards how long would it normally take for the mature plasma cells that have settled into the marrow to die off?

Also, it sounds like you are saying that the ones which secrete the pathogenic auto-antibodies may die off faster? Is this correct?

Lastly, If someone were to do a combination of IVIG and RTX for reducing auto-antibodies, which one would be done first in your opinion?

Thank you! I re-read through this thread again in case I missed the answers to these questions but couldn't find them.