Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

[denmarkk]

So the answer to this question so far seems to be "no known US Riuximab remissions"

I feel as if I may be raining on everyone's hope, but here's another anecdotal story:

Dr. Enlander said that the couple CFS patients he had who developed B lymphoma and received Rituximab did not experience a CFS remission. (He does not now or before administer Ruxtimab. These were CFS patients he was seeing as an Internist who later developed B lymphoma.)

 

[deleder2k]

So, are they overflowing with former CFS patients cured by Rituximab? Where is everyone??

They are not. Report from patients getting RTX outside a study: Someone report that they are worse after infusions (I think mainly due to PEM after infusions). Someone report about status quo, while some say they are better. Too early to conclude.

 

[deleder2k]

I feel as if I may be raining on everyone's hope, but here's another anecdotal story:

Dr. Enlander said that the couple CFS patients he had who developed B lymphoma and received Rituximab did not experience a CFS remission. (He does not now or before administer Ruxtimab. These were CFS patients he was seeing as an Internist who later developed B lymphoma.)

Interesting. Should note that the dosing schedule is different. It is also given for a shorter period of time in cancer.

 

[Gingergrrl]

Interesting. Should note that the dosing schedule is different. It is also given for a shorter period of time in cancer.

@deleder2k Do you know what the dosing schedule is in cancer (vs. autoimmunity)? I know in autoimmunity it is the 375 mg/BSA formula (which put my dose at 600 mg per infusion) and in the Fluge and Mella study, each person got one gram (1000 mg) regardless of their body surface area.

Does cancer dosing use one of those two schedules or is it something different? I discussed at length autoimmune vs. the ME/CFS protocol with my doctor but we never discussed the cancer protocol b/c it did not pertain to me (but now I am curious). No worries if you do not know.

 

[Woolie]

This doc said that Scandanavia has a higher prevalence of autoimmune illnesses than any other region in the world. (verbal comment--I don't have a reference.)

I have heard this too, @Sushi. There was a theory going around for a while that diseases like MS were more common in societies where late life EBV infection is common. That's generally wealthier countries with cooler climates. Even in the US, there is some evidence MS is more prevalent in higher than in lower socioeconomic groups.

These sort of findings inspired the hygiene hypothesis - the idea that the later in life you encounter EBV, the more likely it is to mess with your immune system.

I don't know how widely accepted this hypothesis is, but its certainly interesting.

Of course, EBV might not be the only virus that could challenge a mature immune system in this way. There could be others too.

 

[Kenny Banya]

On one of the threads @Hip linked, a user said "American patients didn't receive 4 infusions of RTX for at least 6 months." which suggests the protocol wasn't the same, and later the same user implies when OMI started using a more similar protocol, the response rate improved.

Ding ding ding.
We have a winner!!!

 

[Wonkmonk]

Of course, EBV might not be the only virus that could challenge a mature immune system in this way. There could be others too.

Perhaps the whole bunch of diseases that are known to have be a lot milder when contracted in childhood. That, as far as I know, is herpes viruses 3,4 and 6 (being Varicella, EBV and HHV6), plus measles etc. Interestingly, all those are known to produce lasting malaise in some patients, e.g. post-viral fatigue after herpes zoster.

For some reason, the immune system seems better equipped to deal with those during childhood.

 

[ebethc]

I'm like you. People in my household get a mild cold or flu, and I get similar symptoms but much more severely and end up in bed for weeks, sometimes months. The last was a stomach virus, and I am still in bed, its coming on four weeks now.

I'm the same.... what do you do??

 

[Manganus]

I was not even aware of those Norwegian success stories. Would you have any links handy to them? Did you search for them in the Norwegian language?

Since I read Norwegian, I ought to know. I've read a couple of anekdotes, but...

But quite honestly, it doesn't interest me. I don't see why we couldn't wait for publication.
Until then, everything would be pure speculations.

 

[Woolie]

I'm the same.... what do you do??

Nothing much TO do, except hunker down and wait for it to pass. I tried prednisone once, after 10 weeks in bed, and it got me moving again. So probably worth it. But it only really worked for me that one time.

I've recently seen a rheumatologist, who found some markers indicative of what he called immunodeficiency. He says they're not characteristic of MECFS. He's referred me to a clinical immunologist.

I mention it because if you're like me, you might also have some identifiable blood markers, if you get the right person to check them out. Try to get your bloods done when you're feeling your worst (I know, easier said than done...).

 

[ebethc]

I tried prednisone once, after 10 weeks in bed, and it got me moving again. So probably worth it. But it only really worked for me that one time.

I have done prednisone... The only thing that would bring down the throat swelling w mono, but I paid for it... I think it really screwed me up, too. However, by that time it was hard to tell....

I've recently seen a rheumatologist, who found some markers indicative of what he called immunodeficiency. He says they're not characteristic of MECFS. He's referred me to a clinical immunologist.

I have very low NK cells and function, but I think everyone w CFS has that....What were the tests/markers? feel free to PM me if you prefer.

thanks

 

[ebethc]

I think we should start a petition to Dr Kogelnik and ask that he release his data including the degree of benefit, and number of patients treated. It's an expensive and dangerous drug and patients have a right to know! The vague 2/3rds number isn't cutting it!

settle down, norma rae. please don't start some big drama that negatively impacts the community and a couple of very fine doctors who are actually helping people. you're not entitled.


EDIT: I'm guessing that you're a millennial and you have no idea who norma rae is... movie about a union organizer, who actually was entitled....

 

[Woolie]

I have very low NK cells and function, but I think everyone w CFS has that....What were the tests/markers? feel free to PM me if you prefer.

So far, they've told me about raised white blood cell counts and raised platelet counts. I've just had another round of tests and they said they found some things they wanted to follow up, and would discuss at my next appointment.

So that's all I can report just now.

 

[tudiemoore]

Silky--This must be very difficult for you. When I realized that I had a "health issue" with no end in sight I became very depressed. I had done everything my doctor suggested, and more, I had a remission--my thought was that I was cured. I expected to be!
And then reality set in.

Very, very different life then and there were no real answers.
Today it seems that we are literally at the door of progress and we can have information, a direction--
There are many well informed people here--I am keeping my ear to the ground!

I never, ever, thought my life would be this way today but I am optimistic and I hope you will be too.
Harriet

 

[Gingergrrl]

settle down, norma rae. please don't start some big drama that negatively impacts the community and a couple of very fine doctors who are actually helping people. you're not entitled.

Thank you @ebethc and this was what I was trying to express but you did it with much more humor and style than I did!

 

[ebethc]

Thank you @ebethc and this was what I was trying to express but you did it with much more humor and style than I did!

thanks... I needed some kind words today

 

[zzz]

I have very low NK cells and function, but I think everyone w CFS has that....What were the tests/markers? feel free to PM me if you prefer.

Another good test for immunodeficiency is called "serum immunoglobulin panel". It tests for blood serum levels of the immunoglobulins IgA, IgG, and IgM. If you have low levels of IgA and IgM, you fit the diagnostic criteria of CVID, and most insurance, including Medicare, will pay for the treatment of CVID with IVIG. Some diagnostic criteria do not require low IgA for this diagnosis, and a low IgG may be sufficient. Although low IgM is characteristic of a condition called "immunoglobulin M deficiency" and responds to treatment with IVIG, this condition by itself is not a primary immune deficiency disease, and therefore, is not covered by most insurance.

Please note that I use words such as "you fit the diagnostic criteria of CVID" rather than saying that you would have CVID, as I obviously cannot diagnose CVID or any other disease. It is possible to fit the diagnostic criteria for a disease and yet have other factors in your condition that would make another diagnosis more appropriate.

There are also other primary immune deficiency diseases that involve abnormal levels of one or more of the three immunoglobulins that I mentioned. If any of these numbers are abnormal, you really need a good specialist to sort this all out.

 

[ebethc]

Another good test for immunodeficiency is called "serum immunoglobulin panel". It tests for blood serum levels of the immunoglobulins IgA, IgG, and IgM. If you have low levels of IgA and IgM, you fit the diagnostic criteria of CVID, and most insurance, including Medicare, will pay for the treatment of CVID with IVIG. Some diagnostic criteria do not require low IgA for this diagnosis, and a low IgG may be sufficient. Although low IgM is characteristic of a condition called "immunoglobulin M deficiency" and responds to treatment with IVIG, this condition by itself is not a primary immune deficiency disease, and therefore, is not covered by most insurance.

interesting... how many IVIG treatments do you need, and how often? Is it something that you have to do for the rest of your life?

I've read very little about IVIG, but I think I saw that it has something like a 50/50 success rate... is that true? I don't know that much about it..

thank you!

 

[Woolie]

Another good test for immunodeficiency is called "serum immunoglobulin panel"

Thanks for this informative post, @zzz. I'm keen to learn more, and what you say helps makes sense what I've been reading.

 

[Gingergrrl]

interesting... how many IVIG treatments do you need, and how often? Is it something that you have to do for the rest of your life?

I don't want to speak for @zzz so will just answer from my own experience which is that I do not believe there is a "set" number of IVIG treatments for each specific diagnosis. I belong to two private IVIG groups on FB and there are people from across the world with every diagnosis known to man who are doing IVIG. There are some who will be doing it for the rest of their lives and others (like me) where it is temporary. If I stop at the end of Dec as planned, I will have done it for 1.5 yrs.

I've read very little about IVIG, but I think I saw that it has something like a 50/50% success rate... is that true? I don't know that much about it..

I think it really depends on the diagnosis and entire clinical picture and don't know that you could give it a 50/50% percent success rate overall b/c it is used for so many different things. It is the most successful treatment that I have done but the true test will be if my improvements remain once I stop IVIG.