Would you try Rituximab?

[meadowlark]

It could be for me if Rituxan gives me anaphylaxis that kills me or the amount of fluid gives me pulmonary edema like I got from the last time I attempted an IV (b/c with MCAS the fluid doesn't necessarily go where it is supposed to.) I am *not* saying that any of this pertains to you or anyone on this board but me, but there are cases where it could indeed make someone worse.

I am horrified for you, Gingergrrl. It sounds like you have been through something truly frightening.

 

[Gingergrrl]

I am horrified for you, Gingergrrl. It sounds like you have been through something truly frightening.

Thank you and my purpose was not to scare anyone from trying RTX (which I have not tried) only that there is the possibility for some of us that it could make things worse and it is not as benign as people have made it to sound!

 

[BurnA]

they definitely are nowhere close to having full results (as far as i know they have just recently begun). this is just anecdotal from a discussion with my doctor, who is also fielding patients for the Klimas Rituxim study. I think they have just begun, but when I asked her if it was worth it for me to come back to NYC to take part in study, she said 1) she wouldn't want me to uproot and get placebo; and 2) the results are mixed thus far.
I will give you my doc's name if u like (actually i just noticed she is named in my account info), she is an NYC CFS specialist, if u are a longtime patient I'm sure you could guess. But I would not want to disclose our conversation in a public forum, as it was private and personal.

Is there a clinical trial protocol for this study ?

Also, I presume if it is placebo controlled then it is blinded also. Therefore there would be no results available yet.
The mixed results may have been pertaining to the phase 2 Norway trials ?

 

[sillysocks84]

I would try vagus nerve stimulation first, at least consistently for 15 months before I started ritux. This is because VNS arrests b cell development, too. Why have people not seen results on vns? Maybe because it is reasonable to think you would see an improvement in 2-3 months, but for some on ritux it took 6, with some seeing greatest results around 15 months. So, because of this I will be doing vagus nerve accupunture and other things to stimulate the VN. Then I will have an open mind for ritux in 15-24 months after that.

Out of curiousity, and it may have previously been answered, when will ritux be made an official treatment? Looking for logical guesses here, as it is very exciting to have the option!

 

[SOC]

Out of curiousity, and it may have previously been answered, when will ritux be made an official treatment?

Probably never.

It may eventually become an official treatment for a subset of ME/CFS patients. That assumes the current research shows that Ritux is effective for a majority of some subset of PWME, and that's not a certainty yet. After that, the research will have to be replicated. Then, medical officials will have to be convinced and the the treatment approved by powers-that-be. I'd say it's 10 years before it will be an official treatment... if ever.

Fortunately, it will probably be available for more patients outside of research studies before that. It just won't be official, so we'll be fighting insurance companies and government agencies that would be paying for the treatment to get it.

 

[sillysocks84]

Probably never.

It may eventually become an official treatment for a subset of ME/CFS patients. That assumes the current research shows that Ritux is effective for a majority of some subset of PWME, and that's not a certainty yet. After that, the research will have to be replicated. Then, medical officials will have to be convinced and the the treatment approved by powers-that-be. I'd say it's 10 years before it will be an official treatment... if ever.

Fortunately, it will probably be available for more patients outside of research studies before that. It just won't be official, so we'll be fighting insurance companies and government agencies that would be paying for the treatment to get it.

Maybe it will be in Norway! We'll all have to move there! I thought I read somewhere the mecfs pots that is autoimmune might be the most responsive one. Which makes sense as it's also used for RA

 

[BurnA]

Out of curiousity, and it may have previously been answered, when will ritux be made an official treatment? Looking for logical guesses here, as it is very exciting to have the option!

the phase 3 results should be published sometime 2018. After this if it demonstrated efficacy some doctors will presumably prescribe RTX then. It may be later than this to be official as @SOC mentions.

 

[sillysocks84]

Thank you and my purpose was not to scare anyone from trying RTX (which I have not tried) only that there is the possibility for some of us that it could make things worse and it is not as benign as people have made it to sound!

Then again I heard it blocks antibodies to beta adrenergic receptor which would help in Mast cells disorders. Beta adrenergic plays a part in the control of mast cells, if yours are being hit by antibodies you probably can't keep control as easily of mast cell degranulation. So it could be what could help. Just saying, that's a likely possibility.

Also why I am trying vagus nerve stimulation like accupunture soon, it arrests b cells like ritux does. So I am hoping to get my food allergies some relief as well as my heart rate from consistent Vagus stimulation. It is just something I feel I have to try. Not knowing when you'll react to food is scary.

 

[sillysocks84]

One more thing @Gingergrrl , I've been speaking to someone at dysautonomia international who says they know of the mast cell connection to pots. And the research and trials they will be having hopefully soon, will focus on adrenergic receptors! Sound a little familiar to ritux?

 

[SOC]

the phase 3 results should be published sometime 2018. After this if it demonstrated efficacy some doctors will presumably prescribe RTX then. It may be later than this to be official as @SOC mentions.

My wild-ass guess is that if the current phase 3 trials show efficacy, more ME/CFS specialists will be willing to use Ritux in a subset of patients after 2018. One published study showing efficacy is not going to be enough to make it possible to get Ritux at the local level. The results of other ongoing or proposed studies will need to be published, which will take another 3-4 years. That would be convincing enough for some local docs to be willing to prescribe, but paying will be a problem until Ritux gets the political stamp as an approved or established treatment.

Bureaucracies work painfully slowly. Once the research establishes the efficacy of a treatment, authorities have to be convinced, and pushed to move the approval paperwork up their priority list. There will probably be plenty of people fighting us, wasting agency time spreading doubt and causing delays. The politics is probably harder than the research. It will be a turf and money war.

 

[snowathlete]

I think we are likely talking about 2020 or thereabouts. I find that depressing as I think it will be apparent in a couple of year's time that it is a decent treatment for a majority of patients and fairly safe, and due to the lack of existing treatment options I think it should be approved rapidly...however, I am not convinced it will be, I think it will take more proof, so the sooner other Ritux studied start the better...but even once we have these, I expect the red tape and the opposition to accepting ME/CFS as a real disease will slow things down, so yeah, 2020ish.
Not sure I am willing to wait that long myself.

 

[ghosalb]

there is a rituxim study just underway overseen by dr nancy klimas in miami. i was invited to take part in the study, but i am too ill to move and it requires 6 mos in either miami or nyc. also, i did not want to relocate and then end up getting the placebo! (i am no longer in nyc)
from what i have learned the results are the usual frustrating mix that those of us with this illness are used to hearing: it helps some patients, doesn't help others, some it helps briefly, some end up feeling worse. just like with ampligen, etc.
believe me, if i heard it was working wonders i would spare no expense or hassle to get there and get the IV in my arm.
but anyone who has the ability to do so, and is another CFS sufferer desperate to get better, pls get in touch w dr klimas and let's get this trial rolling...

NicholasNYC : Thanks for this info....do you know how much it cost...who eligible....I am 2 hrs from NYC...do I still have to stay in NYCity ? just curious.....should be more convenient that getting at OMI. thanks

 

[NicholasNYC]

NicholasNYC : Thanks for this info....do you know how much it cost...who eligible....I am 2 hrs from NYC...do I still have to stay in NYCity ? just curious.....should be more convenient that getting at OMI. thanks

hi,
i have no idea about cost or requirements. if u are interested i wd make an appt to see dr susan levine on 72nd st in nyc.
her # is 212-472-4816.
good luck,
nicholas

 

[Daffodil]

i know someone with CFS who had a vegas nerve stimulator implanted but it ended up having an adverse effect on his breathing he said...it gave him some irreversible problems...so be careful!

 

[sillysocks84]

i know someone with CFS who had a vegas nerve stimulator implanted but it ended up having an adverse effect on his breathing he said...it gave him some irreversible problems...so be careful!

Thank you I will think about it more in that case. Maybe his wasn't autoimmune based?

 

[Gingergrrl]

One more thing @Gingergrrl , I've been speaking to someone at dysautonomia international who says they know of the mast cell connection to pots. And the research and trials they will be having hopefully soon, will focus on adrenergic receptors! Sound a little familiar to ritux?

@sillysocks84 I didn't get to read your msg yet but you are correct that there is a definite connection between MCAS and dysautonomia especially POTS. The trifecta is MCAS, POTS and EDS (but I do not have the EDS part.) I do not personally believe that RTX is the answer for this, especially the MCAS part, as RTX can cause severe allergies or anaphylaxis in "normal" people so they pre-medicate with steroids, benadryl, etc. I am certain I would get anaphylaxis from RTX so it is off the table for me but I am highly on the autoimmune & allergic side of things right now.

 

[Gingergrrl]

Also why I am trying vagus nerve stimulation like accupunture soon, it arrests b cells like ritux does. So I am hoping to get my food allergies some relief as well as my heart rate from consistent Vagus stimulation. It is just something I feel I have to try. Not knowing when you'll react to food is scary.

@sillysocks84 Sorry I missed the above post so am responding separately! Let me know what happens if you try the vagal nerve stimulation although the idea scares me and I have heard stories of it going wrong for people. I have a TENS unit for pinched nerve in my neck but I do not put it on the Vagas nerve itself.

And I couldn't agree more that not knowing when you will react to food is scary. It has been the scariest part of this entire illness for me and I was sick for 2+ years before it started and progressed with a vengeance. I have not heard of vagus neve stim for MCAS but I have not heard of many things!

 

[Daffodil]

Thank you I will think about it more in that case. Maybe his wasn't autoimmune based?

hi @sillysocks84 ....he got it after mono like many of us....
xox

 

[ScottTriGuy]

@sillysocks84
"I would try vagus nerve stimulation first, at least consistently for 15 months before I started ritux. This is because VNS arrests b cell development, too."

Hi Silly

Do you have the link to a study that shows vns depletes b cells?

Also, are you aware of this device?:
http://www.heliusmedical.com/divisions/neurohabilitation/pons-device

 

[sillysocks84]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388134/

@ScottTriGuy , I didn't know about that particular one. I'll have to think about it. I think it's good to start with something gentle and build up if no ill effects happen. Thanks for sharing that!