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

[kiwigirl29]

Check out this video. The last segment is about a lady who is doing much better about being treated with rituximab at the OMI in Silicon Valley.

 

[A.B.]

Serious question!

Disregard hearsay and anecdotes and wait six months for the Rituximab study to be published. That will provide you with far more reliable information.

 

[Murph]

It is super intriguing!

For reference, here's the data table for Fluge and Mella Phase 2. You can see the function levels at teh four testing intervals in the final column. Eleven are listed as still responding at the end of the study of which seven seem to be in really rude health

One of the things I'm most excited by with the Phase III (and the cyclo Phase II) is not so much the binary of whether they achieve statistical significance on the treatment (Inshallah they will!), but all the measurements they'll be taking and what we can learn about the disease from watching responders and non-responders through the treatment process.

 

[Demepivo]

For the autoimmune illnesses where Rituximab has a positive effect eg Rheumatoid Arthritis, it's not seen as a cure but it does help lessen the effect of the condition.

There are a few studies going on to try & work out which subsets of patients respond best to Rituximab funded by ME Research UK (MERUK) & the Solve ME/CFS Initiative (SCMI). Anybody provide more information & links?

 

[Snow Leopard]

For the autoimmune illnesses where Rituximab has a positive effect eg Rheumatoid Arthritis, it's not seen as a cure but it does help lessen the effect of the condition.

RA is different as the inflammation in the joints causes "irreversible" damage. Rituximab cannot cure that.
The key with RA is for patients to be treated early. Unfortunately they are/were often placated with corticosteroids at the start and told to piss off until it gets worse (which it often does) (Rituximab in Australia is the treatment they use when they have tried everything else first). Sigh.

 

[denmarkk]

It is super intriguing!

For reference, here's the data table for Fluge and Mella Phase 2. You can see the function levels at teh four testing intervals in the final column. Eleven are listed as still responding at the end of the study of which seven seem to be in really rude health.

Thanks for posting. Very interesting. Rituximab looks more promising than I thought This graph shows that everyone, except for the last entry, had at least some gain in function.

 

[BurnA]

This graph shows that everyone, except for the last entry, had at least some gain in function.

Just to point out, the table says there were 29 people in the study, there is just 19 listed here.

 

[BurnA]

On the dosage comments, i doubt this is significant. B cell depletion occurs more or less after first infusion, the second one is kind of a just in case infusion ( i am paraphrasing a bit here ). Also in the 1st phase 2, Norway trial which failed on primary endpoint of 3 month follow up, the patients did not have follow up treatment, but still reported gains after the 3 month period. So multiple infusions should not be required to demonstrate some improvement.

 

[Sushi]

Is there a higher prevalence of a CFS like autoimmune disease that is undiscovered in Scandinavia?

Here is a comment from an MD researcher that might be relevant. 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.)
This seems to support Sidereal's comment below:

I tend to think that the published Norwegian studies have accidentally (due to small samples, sample overlap and neurology referrals) studied an as-yet-undiscovered autoimmune disease (perhaps people with an autoimmune dysautonomia with those adrenergic and cholinergic antibodies) and that the reason we never hear of this drug helping any ME/CFS patients in America is because it either doesn't or they're not using the same treatment protocol.

And fits with Gingergrrl's comment:

My doctor who was from OMI but now in his own private practice (OMF is actually the research piece vs. the institute) feels that the potential responders are the ones with autoantibodies who have had good responses to IVIG.

 

[Gingergrrl]

B cell depletion occurs more or less after first infusion, the second one is kind of a just in case infusion ( i am paraphrasing a bit here ).

This is what my doctor said as well-- that most likely I will have total B cell depletion from the first infusion (and I will be having blood test in two days to find out) but that we will still be doing the second infusion as per the autoimmune protocol.

And fits with Gingergrrl's comment:

I want to clarify b/c I am always paraphrasing what my doctor said, from my own understanding, which is never a direct quote from him! He definitely gave me the impression that the people who had a solid chance of being responders were those with proven B-cell driven auto-antibodies but he did not say that someone without auto-antibodies could not respond. I think there is a just a greater chance of being a responder if you know that you have actual auto-antibodies to knock out.

The Fluge & Mella paper (the one with the 12 authors) said that the responders had the beta-adrenergic and anti-muscarinic auto-antibodies, plus anti-thyroid antibodies, plus a positive ANA titer, and I have all of those things. But my assumption is that someone who did not have those things could still be a responder and that I could end up not being a responder. It's a crap-shoot but we felt that I had a decent chance at being a responder.

 

[tomcy6]

Hello everyone. My name is Tom.

I guess it's time for me to get back in here. I have had ME/CFS for over 20 years. I have a bad case of it. I would qualify under any criteria. I am now in what Dr. Cheney would call phase III, IIRC, I don't feel too bad as long as I stay within my boundaries, which are pretty tight.

One of my problems is that I catch viral infections like crazy and occasional bacterial infections. So I ask every doctor I see if they know anyone who can help me. Finally a PCP told me that she refers people to the Cleveland Clinic (CC) for stuff like that. I wanted to get IVIG because my IGG was low. So I went there about 5 years ago and saw a few doctors and ended up with a hematologist who told me that I had a condition that needed to be monitored because it could turn into lymphoma but was not bad enough to be treated yet. If I needed treatment it would be Rituximab. IVIG was out. So I went home disappointed again. The CC is not a ME/CFS friendly place, if you're wondering. The hematologist won't even discuss it with me. Another doctor told me that it was not possible that I was experiencing the symptoms I described.

A few years back I quit reading ME/CFS forums. I couldn't take it anymore. All the time I spent reading them was either bad news (thanks NIH and CDC) or just wasted time. Anyway, I decided to check back in a couple of years ago and when I read about Fluge and Mella, lymphoma and Rituximab I said that's me!

Finally this year the hematologist agreed to treat me with Rituximab. The CC does 4 infusions, over 4 weeks. I have just completed that. I have felt some minor side effects, one of which is decreased energy (I really needed that). I am hopeful that I will improve as time goes on and I have made an appointment at OMI for the 3 month followup (I hope).

So, I'll let you know how it goes. I hope to be that elusive success story that we're all looking for.

 

[Murph]

Thanks for posting. Very interesting. Rituximab looks more promising than I thought This graph shows that everyone, except for the last entry, had at least some gain in function.

Just to point out, the table says there were 29 people in the study, there is just 19 listed here.

Yes I think I trimmed the table at the end of the responders. Sorry. Should have pointed that out.

Here's the full thing with nine non-responders and one allergic reaction.

 

[Gingergrrl]

One of my problems is that I catch viral infections like crazy and occasional bacterial infections.

I am doing Rituximab, too, and my second infusion is in six days but I am the polar opposite of you and not had an infection of any kind in over four years.

I wanted to get IVIG because my IGG was low. So I went there about 5 years ago and saw a few doctors and ended up with a hematologist who told me that I had a condition that needed to be monitored because it could turn into lymphoma but was not bad enough to be treated yet. If I needed treatment it would be Rituximab. IVIG was out.

WTF? Why was IVIG ruled out? That is crazy. I guess CC did not want to bother with trying to get the insurance Auth (or did they give you another reason)? How did they determine that your condition could turn into lymphoma?

Finally this year the hematologist agreed to treat me with Rituximab.

Yay, that is great news!

I hope to be that elusive success story that we're all looking for.

I hope so, too, and please keep us posted. I'd love to talk to you further some time re: your experience with Rituximab. Best wishes to you and glad you decided to post again.

 

[tomcy6]

Hi Gingergrrl, Thanks for the kind wishes. I have been reading your thread on Rituximab and I wish you the best also. Maybe we can get some good news going here.

What I was treated for is called a monoclonal gammopathy.

Most people with ME/CFS do seem to fall into the no colds or flu camp, but I have met (online) others who have my problem. I don't know what my problem with getting IVIG is but my IGG levels keep sinking lower and lower. I'm hoping that the Rituximab will put me under the bottom, as opposed to over the top, and I'll get IVIG or that my IGG will start to rise now.

I'd like to talk to you also. Feel free to contact me.

 

[Woolie]

Most people with ME/CFS do seem to fall into the no colds or flu camp, but I have met (online) others who have my problem.

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.

 

[Jenny TipsforME]

Scandanavia has a higher prevalence of autoimmune illnesses than any other region in the world.

Historically my Celtic-British DNA comes via Scandinavia (ie dark patch on Norway in the 23andme graphic), so that is interesting. I'm also in the POTS-ME subgroup so my fingers are very firmly crossed!

Does anyone know if the POTS subgroup is relatively large in Scandinavian ME? In UK it is about 1/3 pwme have POTS (if someone knows to test for it ).

I also found the table of patients' data unusually interesting for a table of data. It seems much more real when you see an individual's functional scores dramatically increase like that. I'll be shocked if the phase III unblinking shows that to be a placebo effect.

With the non responders I wondered if the initial trigger was relevant? It's not a neat fit :thumbdown:

 

[Mij]

@tomcy6 I've had M.E for over 20 years and fall into Dr.Cheney's phase III too. I have constant viral reactivations. I live alone so no exposed to people.

Wondering if you actually 'catch' them or if your infections are reactivations?

 

[Gingergrrl]

Hi Gingergrrl, Thanks for the kind wishes. I have been reading your thread on Rituximab and I wish you the best also. Maybe we can get some good news going here.

@tomcy6 Thank you and I had no idea you were following my Ritux thread! Please feel free to type about your experience with Ritux in there if you want to as I think it will be very helpful to everyone. We definitely need to start some good news going like you said.

What I was treated for is called a monoclonal gammopathy.

Was this determined b/c you tested as having high IgM? I have consistently had high IgM the last few years but it is just slightly elevated and so far, all doctors have told me it is not of concern and nothing needs to be done about it. Was yours very elevated (assuming it was the IgM)?

Most people with ME/CFS do seem to fall into the no colds or flu camp, but I have met (online) others who have my problem. I don't know what my problem with getting IVIG is but my IGG levels keep sinking lower and lower. I'm hoping that the Rituximab will put me under the bottom, as opposed to over the top, and I'll get IVIG or that my IGG will start to rise now.

It seems to split into people who get sick with colds or flu constantly to those like me who have not had a single cold, flu or fever since their illness began (which in my case is now about 4.5 yrs). I am shocked that they denied you IVIG but let you try Rituximab! This seems very strange to me although nothing really shocks me any more!

I'd like to talk to you also. Feel free to contact me.

I would love to talk further with you as well. I won't be able to send a PM until later tonight or tomorrow but will definitely contact you or vice versa.

 

[silky]

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

 

[tomcy6]

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.

You have my sympathy, Woolie. When you put constant viral infections on top of everything else that comes with this illness, it's a miserable way to live. I hope you get well soon and stay that way as much as possible.