Article: A Drug For ME/CFS? The Rituximab Story

You can view the page at http://forums.aboutmecfs.org/content.php?287-A-Drug-For-ME-CFS-The-Rituximab-Story-possible-chronic-fatigue-syndrome-treatment

 

BTW, Kogelnik is planning a trial of rituximab, in conjunction with antivirals. His thought is that the B-cells may be reservoirs for active viruses, and that killing them off helps to get rid of active virus infections. I guess that antivirals can't get at the viruses in the B-cells. (Though this article notes that there is little evidence of active viral infection in these patients.) He thinks that the B-cells may get slowly reinfected afterward, leading to the recurrence of symptoms. His hope is that by combining the two, it would be possible to completely eliminate symptoms.

I don't know when that trial will begin, though. He told me that he has a trial of a number of antivirals and immune modulators that he hopes will start in March, but I don't know whether that will include rituximab. When I spoke with him about it a couple of months ago, it sounded like it might take a bit longer to get the rituximab trial started.

Fascinating - I wonder if Mella knows about it. Is Kogelnik at Stanford? That's great that he's picking up on this.

 

The Dr. Olav interview mentioned the ever more irritating phrase "paper yet to be published". Do you have any idea when?

It's ashamed that the NIH couldn't do something to expedite the publishing of all the backlogged "papers" that seem to be piling up!!!

 

The Dr. Olav interview mentioned the ever more irritating phrase "paper yet to be published". Do you have any idea when?

It's ashamed that the NIH couldn't do something to expedite the publishing of all the backlogged "papers" that seem to be piling up!!!

Fraid I don't...I think its in the hands of Journals.....a real flaw in medical research - for sure...

 

.. Kogelnik .. thinks that the B-cells may get slowly reinfected afterward, leading to the recurrence of symptoms. ..

Thanks for this post Julie - makes great sense.

Thanks Cort.

 

CFS/lymphoma/chemotherapy

I have trouble posting so hopefully this goes through. I have a long history of CFS. I am also a cancer survivor. I didn't take rituximab, but I did have several other drugs. I can definitely say that the fatigue/weakness component of my CFS improved dramatically. The effects lasted at least a year - it was amazing.

My son also had Hodgkin's lymphoma.......

 

Wow determined. That's amazing. I guess you took other chemotherapy drugs. (Are chemotherapy drugs the only drugs you take for cancer?). Can you remember what they were?

 

Rituximab

Wow determined. That's amazing. I guess you took other chemotherapy drugs. (Are chemotherapy drugs the only drugs you take for cancer?). Can you remember what they were?

I felt as if I was DYING after the 2nd perfusion with Rituximab on May 24th. Was hospitalized during 10 days. Still not recovered completely! Have to take now meds for tachycardias I did not have before. I had the worst CFS bout ever due to the perfusion. Strange! antagonistic effect! NEVER AGAIN.
succes to other people!

 

The Dr. Olav interview mentioned the ever more irritating phrase "paper yet to be published". Do you have any idea when?

It's ashamed that the NIH couldn't do something to expedite the publishing of all the backlogged "papers" that seem to be piling up!!!

That really is the most irritating phrase ever! Maybe that should be the next e-mail campaign. (grins) Let the papers fly free, free I say!

 

I felt as if I was DYING after the 2nd perfusion with Rituximab on May 24th. Was hospitalized during 10 days. Still not recovered completely! Have to take now meds for tachycardias I did not have before. I had the worst CFS bout ever due to the perfusion. Strange! antagonistic effect! NEVER AGAIN.
succes to other people!

Wow. How did you come to take the drug? Was somebody trying it for CFS? or something else?

 

cancer drugs

The drugs I took for cancer treatment included: epirubicin, fluorouracil and cytoxan. I had six infusions of these, 3 weeks apart. They also gave me some medications to help prevent side effects of these drugs. Those medications were ativan, benadryl, and nausea medications which included, at different times, zofran and anzemet.

Interesting point: Holmes and Rahe have what is called a life stressor scale. In addition to having cancer, I also had three of the MAJOR life stressors, and yet....I got BETTER during this time with respect to fatigue/weakness. My CFS physician commented to me that several of her patients who had cancer often got better for a time during and after treatment.

I can't say that the treatments cured (even short term) all of the symptoms of this complicated illness. I had very significant pain that "took the place" of the fatigue/weakness. But I would rather have pain that is somewhat treatable than weakness/fatigue that didn't respond to anything.

Interesting article, Cort!

 

Interesting point: Holmes and Rahe have what is called a life stressor scale. In addition to having cancer, I also had three of the MAJOR life stressors, and yet....I got BETTER during this time with respect to fatigue/weakness. My CFS physician commented to me that several of her patients who had cancer often got better for a time during and after treatment.

Isn't that just friggin interesting? and doesn't that open the field a bit...Someone should figure out what cancer drugs are doing and report back....I know they knock off growing cells.....viruses???

Its just too weird - chemotherapy drugs make some people with CFS better! You got stronger on chemotherapy! Who gets stronger on chemotherapy....

You've got to have some tough disease to get stronger on chemotherapy! :mask::mask::mask::mask::mask::mask::mask::mask::mask::mask:

Is CFS interesting or what?

I wonder what Dan Peterson would say about this with his lymphoma patients...anybody seeing Dan coming up?

 

Is CFS interesting or what?

CFS is extremely interesting! I am eager to learn the cause...how can all these symptoms all be tied together physiologically? As a science nerd, it's all very interesting. But as a mother, it is terrifying as well.

 

It is a very very interesting bit of research. But lets not forget that Ritixumab kills 1 in 4000 people that take it! It does however show that B cells are very much a key part of the illness. We need more research on this!

I too have heard of many people getting better with cancer chemotherapy, some full recoveries, some temporary. Thanks for the details of your drugs - the ones you mention (epirubicin, fluorouracil and cytoxan) show that possibly not only ritixumab is the one that helps as claimed by the Norway research. (they also said methotrexate helped)

 

It is a very very interesting bit of research. But lets not forget that Ritixumab kills 1 in 4000 people that take it! It does however show that B cells are very much a key part of the illness. We need more research on this!

I had no idea that Ritixumab had such a high mortality rate!

Yes, the rate of progress is so very slow....it's hard to believe I've had this for three decades. But I have high hopes that the next generation of people affected will have more help.

 

All the monoclonial antibody therapies have had problems, many of the earlier ones are now withdrawn. The most serious problems is with progressive multifocal leukoencephalopathy, this is now being reported in increasing numbers of people taking Rituximab. It is caused by reactivation of dormant viruses like JC virus in the brain. But also viruses like Hep E and other dormant viruses can reactivate.

"JC virus reactivation (resulting in PML) in an immunosuppressed person commonly results in death or severe brain damage."

I have high hopes too, within 5 years there will be an answer for ME!!!!

 

What is the source of that data?

 

Interesting

Your assessment of this article seems to gloss over the obvious possibility that this medication helps because Chronic Fatigue Syndrome is an autoimmune disorder.

CFS patients are obsessed with the condition having to be a long-term viral infection.

Long term viral infections and immuno disfunctions are frequently reported as side effects of the abherant immune behaviour and chronic inflammation present in systemic auto immune disorders.

This medication has been found to be effective in a variety of serious, systemic auto immune disorders.
CFS often has many characteristics that are also commonly found in autoimmune disorders:

1. fluctuating course that waxes and wanes
2. an abrupt onset following stress OR a gradual onset
3. common comorbidities with other autoimmune disorders such as Hashimotos Thyroiditis, RA, Ankylosing Spondylitis and Crohns
4. Biomarkers suggesting chronic inflammation, increased oxidisive stress, abnormal autonomic control.
5. autoimmune disorders frequently arise after infection with a variety of viruses.

So it is just as likely that this medication helps because CFS is an auto-immunity based disorder as it helps because of the medications affects on B cells or in a retroviral context. Just because this medication may help doesnt automatically mean it helps because of anything to do with long term viral infection.

 

Very interesting to read, thanks Cort and I'm no scientist. Not possible to try anything here and though so far I,m struck by the "theory" side not quite there yet. But gosh is it on the way.

 

Ramakentesh

Of course it is very possible that CFS is autoimmune. Until all this talk about the virus, I had always assumed that it was. You make a good point, ramakentesh.

 

I've long ago concluded that CFS is most likely *either* a chronic viral infection or an autoimmune disorder, or possibly a combination of both. If a treatment such as Rituximab shows benefit in properly conducted trials on a well-defined patient cohort, then it doesn't immediately matter which of the two it is - trials and possibly approved treatments can proceed based on the proven benefit while study continues into the ultimate pathology of the disease. There are quite a number of medications that are approved for various disorders where nobody knows exactly *why* they work, yet.