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

[tomcy6]

@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?

Hi Mij, I think in my case it's catching common viruses. I do get symptoms from out of the blue that may be reactivations and I'm scared to death of getting shingles, but usually I come down with a cold or flu-like illness after being out in public, which I avoid as much as possible.

 

[Nielk]

I can tell you with 100% honesty that since posting my thread about Rituximab, I have been contacted by multiple people who did Rituximab either through OMI or Kolibri and several had good responses. I was also contacted by one OMI patient over a year ago who had a good response but she did not want to share it on the public board for personal reasons. Since I do not have permission to share any of their names or details, I have to honor that but this is several people and they really do exist.

Is there some type of gag on these OMI/Rituximab responders that they are not willing to state this publicly? After all, PR members remain anonymous (if that's what they want to do), so there should be no fear to post their experience here.

Besides myself, who has tried Rituximab - prescribed to me because I developed RA 4 years ago (Have ME for 14 yrs), I personally know of 3 other US patients who have tried it. I and another patient had no effect. Two others became worse.

 

[Mij]

Hi Mij, I think in my case it's catching common viruses. I do get symptoms from out of the blue that may be reactivations and I'm scared to death of getting shingles, but usually I come down with a cold or flu-like illness after being out in public, which I avoid as much as possible.

Oh, I'm with you on fear of shingles. I asked my doc about the vaccine and she told only after age 60. I'm not keen on a vaccine either which is not preventative and only lessens the symptoms. So keeping fingers crossed.

 

[Wonkmonk]

I am the polar opposite of you and not had an infection of any kind in over four years.

Exactly the same here, last time was January 2014. I already hat lots of symptoms at the time, but I was still working fulltime and could complete a half-marathon. After August 2014, things went downhill pretty quickly, and I never have been sick with a infection since then.

I think there must be some connection.

Btw, @silky, did you already test herpes virus as a possible cause?

As far as I can see (please correct me if I'm wrong), there are just two treatment protocols that have had considerable success confirmed by medical studies. One is Rituximab, and the other one is anti-viral herpes virus treatment as proposed by Drs Lerner & Montoya among others.

I would think these two options are targeting different types of CFS disease, so everyone should do comprehensive diagnosis with doctors to see which one may be right.

But what's certain is that the antiviral option, esp. if it can be done with Valacyclovir, is much less risky than Rituximab.

So if it was equally likely that either Rituximab or antivirals might help, I'd try antivirals first.

 

[Wonkmonk]

I'm scared to death of getting shingles

There is a vaccine for Shingles. It's called Zostavax.

 

[Wonkmonk]

Oh, I'm with you on fear of shingles. I asked my doc about the vaccine and she told only after age 60. I'm not keen on a vaccine either which is not preventative and only lessens the symptoms. So keeping fingers crossed.

That's not entirely correct, studies say it prevents over 50% of Shingles cases and lessens symptoms in those who still get it.

https://en.wikipedia.org/wiki/Zoster_vaccine

Not advocating for or against getting vaccinated, just sharing the info I know

 

[Mij]

Well that's good. But they don't recommend for people with weakened immune systems, so I won't be getting a vaccine.

 

[tomcy6]

Zostavax is a live virus vaccine so anyone having problems fighting viruses should be very wary of it.

Maybe we should get back on topic now. Sorry Silky.

 

[tomcy6]

Silky, we PWCs don't get to meet very often and we're talking about a pretty small number of people, so I would contact OMI and see if they can connect you with anyone who is in remission.

 

[silky]

@tomcy6 that's a good idea

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!

 

[Gingergrrl]

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

I feel like you ignored my post in which I stated with complete honesty that there are people in the US in both of my FB groups who have improved from Rituximab and that I have been contacted by now a total of three people on PR who have improved from Rituximab (one from Kolibri and two from the US). None are what I would call a "remission" but without question, they have had improvements.

The Fluge & Mella patients have had improvements but I suspect they are not supposed to be speaking about them publicly until the full study is complete. In addition, they might not all know about PR and they might not all speak English. And some people just want to maintain their privacy.

I am forgoing all privacy to post about my Rituximab experience in case it can help others and will be the first to admit if it does not lead to a remission (or even to improvement beyond what I have gotten from IVIG). But there are not a lot of people who have had the opportunity to try Rituximab in the US yet so I think it is too early to draw this conclusion.

Versus with IVIG, I belong to a group on FB called "IVIG saved my life" and that is truly how I feel and it led to a remission of the MCAS portion of my illness. But this is b/c thousands (millions?) of people in the U.S. have done IVIG and we have some pretty good data. We will have that in the future for Rituximab. In my opinion, it is much too early to write it off as a potential treatment but you can come to any conclusion that you choose.

 

[Gingergrrl]

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!

Is this serious or a joke? Dr. Kogelnik is not forcing anyone to try Rituximab. What do you mean "this vague 2/3rds number is not cutting it"? Do you know the statistics for those who have gotten total remission of Lymphoma or Rheumatoid Arthritis from Rituximab? Do those doctors also need a petition to release this data? It is a risky drug without question but some patients (myself included) feel it is worth the risk. I would never have done it four years ago when I first got ill but with my auto-antibody profile and literally 3-4 lengthy phone consults with my doctor solely on this topic and my individual case, I decided it was worth trying. Which honestly created months of an insurance battle that I'm sure my doctor could have done without.

 

[Wonkmonk]

Is anyone actually monitoring Norwegian forums?

 

[Gingergrrl]

Is anyone actually monitoring Norwegian forums?

That is a great question and maybe @deleder2k or @Marky90 might know?

 

[deleder2k]

That is a great question and maybe @deleder2k or @Marky90 might know?

Absolutely. I am the Norwegian forums. At least some portion of it

 

[silky]

@Gingergrrl Hi there I mean no offense or disrespect to any doctor! I'm just a girl who likes data with cross tabs!

By the way I have read many of your posts and frankly you're an inspiration to me I'm a graphic designer by trade, so clearly not a doctor, but I think due to all the autoimmune stuff you've posted, you stand as a good a chance of a substantial response as anyone I can think of!

 

[Wonkmonk]

Absolutely. I am the Norwegian forums. At least some portion of it

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

 

[Gingergrrl]

@Gingergrrl Hi there I mean no offense or disrespect to any doctor! I'm just a girl who likes data with cross tabs!

Thanks for clarifying and to me it sounded disrespectful to ask other patients to start a petition demanding that Dr. Kogelnik release data about his patients responses to treatment. He has not done an official study on Rituximab, as much I am sure he would have liked to, because no one has funded this!

I don't see why he would be required to release private patient data on Rituximab anymore than any other private doctor on any treatment (like Valycte or IVIG or anything). He is one of the good guys and it disheartens me when I read stuff like that.

but I think due to all the autoimmune stuff you've posted, you stand as a good a chance of a substantial response as anyone I can think of!

Thank you and I appreciate it.

 

[MEMum]

People in the Norway trials, can only have the Ritux as per the trial protocol.
Prof Mella commented at IiME in June that it is hard to give people their lives back, and then not to be able to continue to treat them. So for those at the beginning of the trial, it could now be over a year since they had any Ritux. Some have had Cyclophosphamide and found their response similar to Ritux.
As my daughter has autoantibodies I'm hoping that she will be a responder. Waiting for Norway results.

 

[denmarkk]

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

I hope so, too! Definitely keep us posted. Can't wait to hear updates.