• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

My Rituximab experience for ME

Gingergrrl

Senior Member
Messages
16,171
i have 6 doses of rituxan in my vein since 2014 december with serious side effects , and i know results of many "human guinea pig "

@morse27 I was curious what serious side effects you had from Rituxan? It is not something that I would ever try myself as I know I would be allergic to it and don't believe it is safe it you have active viral (IgM counts.) Did you get an allergic reaction or other side effects? Am sorry if you already explained and I missed it.

Top drs that use ivig or scig right at the begging of onset see results look at dr peterson, dr teitalnbalm, dr oaklander, dr tae park, dr KDM.

@Justin30 I was just curious, is Dr. Oaklander the same person as Dr. Enlander or someone different? Also, who is Dr. Tae Park? I have not heard of him. Do you have any links re: the IVIG or SCIG? Thanks!
 

morse27

Senior Member
Messages
123
Location
NORTH of FRANCE
@Marky90 ? I hope to read for you good effect on your health, but its important to know that lower 10% patients with ME will be cure for a long time or for life.
its sure you will know improvment as many patients for many months , but you can will be worse too
to answer about if i am allergic or if i have make a anaphylactic reaction after infusion ; no, neither for these 6 infusions

but , my professor in france said me rituximab is always a risk for all patients , and you will signe a discharge before your first infusion,!
this discharge explain the risk of death , PML (virus JC is not visible in blood but only in CRL, and this test will be not testing) or other diseases.
i have many other side effect with this drug recently after 13 months , but i understand you need to try too ,
perhaps you 'll be in the little group and cure for you life ,
you can learn many studies in french about side effects of RTX on RA patients when they used more 5 infusions on the net, i'm not sure these studies exist in english , perhaps
good luck!! ,
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
@Marky90 ? I hope to read for you good effect on your health, but its important to know that lower 10% patients with ME will be cure for a long time or for life.
its sure you will know improvment as many patients for many months , but you can will be worse too
to answer about if i am allergic or if i have make a anaphylactic reaction after infusion ; no, neither for these 6 infusions

but , my professor in france said me rituximab is always a risk for all patients , and you will signe a discharge before your first infusion,!
this discharge explain the risk of death , PML (virus JC is not visible in blood but only in CRL, and this test will be not testing) or other diseases.
i have many other side effect with this drug recently after 13 months , but i understand you need to try too ,
perhaps you 'll be in the little group and cure for you life ,
you can learn many studies in french about side effects of RTX on RA patients when they used more 5 infusions on the net, i'm not sure these studies exist in english , perhaps
good luck!! ,

Thank you for your concern

Based on the studies in norway one third experiences a major response, so I think the outlook is better than a 10 % chance.. Where is that from anyway?

Death and PML is nothing to worry about, what I`m most concerned about is a transient worsening of my ME/CFS. Which is quite common.

What side effects do you experience?
 

Justin30

Senior Member
Messages
1,065
Is that where you are from?

We are suppose to be getting a clinical trial over here in Canada next year where I am from.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Is that where you are from?

We are suppose to be getting a clinical trial over here in Canada next year where I am from.

Yeah I`m from Norway :)

Really? Who`s orchestrating that? That`s awesome!
 

Justin30

Senior Member
Messages
1,065
Not sure was a roomer from my CFS Specialist he seemed confident that it will start. I heard the US and the UK may also start them as well.

This next year will be huge for me/cfs. Did you hear about thr NIH starting their huge CFS study? Using exercise testing, blood tests, microbiome tests, etc Really recent info...very exciting
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Based on the studies in norway one third experiences a major response, so I think the outlook is better than a 10 % chance.. Where is that from anyway?
The 10% positive outcome that Hip mentioned was for Rebecca2z. It has since then stopped working for her...

Rituxan does wear off :(
Just wanted to give an update. About 6 and 1/2 months after the fourth round of Rituxan I contacted my doctor and told him I was seeing some signs that the RTX was wearing off. He said I had to do some B-Cell tests in order to know if I am due for a maintenance dose, so I drove the 8-9 hour round trip just to do the test. He contacted me and said no it was too soon.
 

dannybex

Senior Member
Messages
3,561
Location
Seattle
@JPV I guess my point was that overall, the percentage of 'success' was much lower than in Norway (1 out of 7 had responded, making it about 14%), and Hip had a hypothesis for why that might be:

"It's conceivable that in Norway, there may have been an epidemic of ME/CFS caused by a particular pathogen, creating a specific subset of ME/CFS patients that respond well to rituximab.

There was in fact a large outbreak of giardiasis in Bergen, Norway in 2004 (giardiasis = intestinal infection with the parasite Giardia lamblia), and it was found that 5% of patients who came down with giardiasis in Bergen went on to develop ME/CFS. So Giardia lamblia appears to be a trigger of ME/CFS. (They also found a 39% prevalence rate for IBS in these Bergen giardiasis cases, 6 years later)."
 

Justin30

Senior Member
Messages
1,065
Great discussions....I highly encourage you to start listening to what Dr KDM has been stating since 2013. He said that this is only part of the solution to ME/CFS.

B Cell Depletion eliminates the problem temporarily but once the B Cells grow back (12 months) they are still messed up because the disease process is still in affect. That is why people relapse again yet for a small some it is the answer.

Watch what Dr KDM has to say in his videos:

I am having major issues with my phone and copying links go to you tube and type in:

Kenny De Meirlier Rutuxan: 14. ME and treatment; is the name of the video

If you go back in the literature you will see that KDM has been at the forefront of putting the pieces of the puzzle together like co-finding defective RNa L viral pathways and the use of ampligen. Another one recently is that CFS stems from issues in the Micribiome which Dr KDM has being saying since 2009 and now Ian Lipkin the touted virus hunter is saying its in the Micribiome not to mention that Peterson, OMI Drs, and many other top Dr are all treating SIBO which is found in the majority of me/cfs patients.

Do get me wrong I believe their to be subsets. People we need more funding for a biomarker and the testing of more Drugs, period.

I hate admitting it cause right now my life sucks most of my days are spent on my back and I havent even had it for that long.

I was told to my face that we need drugs that have not been invented yet but we can see where the dysfunctions are in the diease.

If I had a wish it would be for some of these top ME/CFS Specialists to put everything aside pride ego etc and work together and push hard for the biomarker and medication.

Imagine a study done at world class laboratory with 15 to 20 of the top ME/CFS Dr working together something would get done I guarantee it...
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
I`m all for skepticism, but I feel KDM should back it up. Just pointing to the microbiome, is not really enough for me.

Rtx is no cure all medicine, but then again: ME/CFS is unlikely to be ONE disease.
Probably rtx needs a co-medicine, e.g. cyclo.

When analyzing possible effect, it`s a bad idea to deduct it from a internet forum, let`s stick to the studies.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
If I had a wish it would be for some of these top ME/CFS Specialists to put everything aside pride ego etc and work together and push hard for the biomarker and medication.

Imagine a study done at world class laboratory with 15 to 20 of the top ME/CFS Dr working together something would get done I guarantee it...

Imagine NIH actually deciding to organize an effective research program and funding it appropriately with stable long-term funding instead of making researchers beg for one grant at a time. They know how to do this with other illness, but when our illness is mentioned they are suddenly broke, ignorant, and can't find their ass with both hands and a map.
 

Justin30

Senior Member
Messages
1,065
Im not saying that riuximab wont be the answer i think it will be for a subset of patients even read and watched a video of a guy that went symptom free for many years after hearing that Fluge and mella had found a drug that was working. Lewellyn King video.

I think me/cfs is like cancer. You can have cancer of the colon, breast, ovarian, skin, and the list goes on.

There are many treatments for CFS and there will be more as it is seriouse diasease.
 

Justin30

Senior Member
Messages
1,065
I honestly hope and pray for people that take this drug that they get better....and I am still on the fence about trying it myself....

I hate this disease so much...within days it can turn you into an invalid...it is relentless punishing and cruel.

I dont want to upset about agian today I feel OK atm.
 

EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
@Marky90 ,
Rituximab improve many ME people (65%) just a short time ,
but its impossibe to take this drug every 4 months for life !!

I'm not sure what you mean about taking the drug every four months for life, I see no problem with that whatsoever !
e.g. I have a cousin with renal failure (long term, he has had 1 transplant so far which eventually packed it in as well) and he drinks, smokes (weed and possibly other stuff) eats junk constantly, parties etc he can do all sorts of manual labour and has all his brain function - he needs to go twice a week for dialysis but has option to take his laptop and do work for company for full pay. we are talking about less than this for CFS and being given back an absolutely staggering amount of function (for the people it works on) .

I *dream* about a dialysis style process for the likes of us, going in and spending a day every couple of months getting jabbed with muscle promoting peptides, having any sort of blood filtration done to remove junk, infuse b12 or whatever else is deemed beneficial , get some oxygen therapy and get ritux or another b-cell depletion drug infused. I am not currently aware of any doctor in Australia at all who is seriously considering either ritux or peptides for CFS patients

as it stands I'd give up a full day every week if it meant I could have something approaching my old function levels back for the rest of the week.


in case you meant something about the cost, there are already about 3 drugs that have similar effects on B-cells to ritux but 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.

I don't know about the short time, don't we have some people maintaining improvement around 5 years after their last infusion ?
 

Justin30

Senior Member
Messages
1,065
I'm not sure what you mean about taking the drug every four months for life, I see no problem with that whatsoever !
e.g. I have a cousin with renal failure (long term, he has had 1 transplant so far which eventually packed it in as well) and he drinks, smokes (weed and possibly other stuff) eats junk constantly, parties etc he can do all sorts of manual labour and has all his brain function - he needs to go twice a week for dialysis but has option to take his laptop and do work for company for full pay. we are talking about less than this for CFS and being given back an absolutely staggering amount of function (for the people it works on) .

I *dream* about a dialysis style process for the likes of us, going in and spending a day every couple of months getting jabbed with muscle promoting peptides, having any sort of blood filtration done to remove junk, infuse b12 or whatever else is deemed beneficial , get some oxygen therapy and get ritux or another b-cell depletion drug infused. I am not currently aware of any doctor in Australia at all who is seriously considering either ritux or peptides for CFS patients

as it stands I'd give up a full day every week if it meant I could have something approaching my old function levels back for the rest of the week.


in case you meant something about the cost, there are already about 3 drugs that have similar effects on B-cells to ritux but 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.

I don't know about the short time, don't we have some people maintaining improvement around 5 years after their last infusion ?

Dr Peterson said what we need for this illness is centers for excellence. And i agree.

Dr T has his Fibro and fatigue clinics. Similar to thos model but including research on all subjects at various sites throughout the countries...i dont know:ill:

We need subsets, biomarkers and real drugs.

Rituximab...is a drug for a subset imo...it has been shown to only work for very few followed by relapse. The drug is to strong to take over and over again from what I understand.

I wonder if we asked some of these top CFS Drs, if they could design a drug what it would do in the body? Maybe someone should be asking them? I am sure some know more than we think or here about. Most of them converse.