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If there were no barriers, financial or otherwise, what treatments would you try

Messages
16
I think that RTX will turn out not to be what people are hoping for. It may have an effect if your illness is based on some autoimmune process but no one knows. I thought for sure it would help because my family ( cousin and niece) have autoimmune diseases(MS and such). It did abosolutly no good other than put me on an IV chair for 7 hours every time i got an infusion, It depleted my B cells for over one year and I keep hoping I would be a late responder but no relief. I also had IVIG prior to RTX and that was the same. Again IVIG may help those that have an autoimmune issue but I suspect that Fluge will now change his hypothesis that ME is autoimmune based. You can PM me if you want to ask more questions.
 
Messages
45
Location
Amsterdam, NL
David's and Marky90: DID you try out Rixumitab?

Where in Norway?
And no effect?
Nor better, no worse...?

And you do not think it is an autoimmune disease?
What is it than in your opinion?
Auto-inflammatory? Which comes close, I would say...

Sorry a lot of questions, but utterly curious.
( I myself for 5 years at professor Meirleir, but stagnating on all the ABs..)

Can send a PM to.
 
Messages
16
David's and Marky90: DID you try out Rixumitab?

Where in Norway?
And no effect?
Nor better, no worse...?

And you do not think it is an autoimmune disease?
What is it than in your opinion?
Auto-inflammatory? Which comes close, I would say...

Sorry a lot of questions, but utterly curious.
( I myself for 5 years at professor Meirleir, but stagnating on all the ABs..)

Can send a PM to.
 
Messages
16
RTX was done in the US but followed what Norway laid out was the dose and schedule.
There was no response after 9 months of doses and immediate B cell depletion. No worse or better exactly the same. The B cell depletion did not affect my immune resistance.
I do not think that it is autoimmune with me even though my niece has MS at 33 and first cousin has what is called IBM which are autoimmune. I do believe some have autoimmune issues which causes the fatigue. I also believe that the response rate is being misquoted and if the study is legit it will be around 20 %( those with autoimmune).
I had a Lumbar puncture done and had elevated Proteins so maybe something wrong with metabolism but with all these neuro symptoms it may not be one thing. I also think if you have POTS then CFS/ME gets worse over time which i do not have so can still walk and talk and do some things. For me my system does not show inflammation which a lot of people say they have.
I also did IVIG 6 or 7 times and that had no effect good or bad. Just made my blood test numbers go crazy.
I do not take any suppliments as I found they just do not work for me. What I take is .5 M of Clonipan to sleep.
Sleep for me is the biggest challenge and after 3 years never cracked it.
Also-had every test done known to US medicine and nothing shows up other than ammonia and low T3 which is not something most doctors care about.
IN relation to AB's -a few doctors swear I had Lyme but no one could prove it. Igenix twice negative and Galaxy Twice negative so I do not take AB,s.
I took Famvir for 6 months because of desperation and no good results came from that.
This is truly a strange disease .
 

Johnskip

Senior Member
Messages
141
I'm curious to know what some of the groundbreaking but out of reach but promising treatments out there that people would try.

For instance, stem cell therapy, fecal transplants (there was another but sigh...my brain doesn't work enough to remember).

Are there therapies that exist that hold promise but aren't attainable due to cost or other reasons?
I would want the treatment of letting healthy people live in our shoes for 15 minutes if there was such a way!
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
I'd like to try intrathecal injection of mRNA-124; that micro-RNA is supposed to be the 'turn off now' switch for microglia. I'd also like to try one or more of the compounds that alter the kynurenine pathway. 1-methyl-tryptophan might not be ideal, since it also reduce KYNA which is a good kynurenine; there are other drugs which modify different parts of the pathway, but those have far less experience in humans. AV-101 (4-chlorokynurenine) is something I wanted to try, but I'd have to recheck why I thought it might help.

I'm less focused on 'What might be an effective treatment?' and more on 'What will reveal something useful about this disorder, which could point towards possible treatments?' I try things that I expect will worsen my symptoms, just to test that hypothesis.
 

Kenny Banya

Senior Member
Messages
356
Location
Australia
I believe many people would like to try rituximab if given the opportunity. I don't know if it's something I would like to try myself, I think for now I'd like more studies done on it.
You could try Rituximab cost effectively by 'faking' rheumatoid arthritis.
I am seriously thinking of doing this.
If you get sore joints, you could convince a rheumatologist to try various things.
The order will go:
1) Corticosteroid
2) Methotrexate
3) Rituximab

At some stage, you will have an MRI - my MRI did not show rheumatic symptoms.
I convinced my rheumatologist to allow me to use methotrexate. However, at the 11th hour my CFS Specialist said not to do it, because joint soreness is symptomatic of CFS.
However, now that I have learnt that methotrexate & subsequently rituximab may be able to treat CFS, I am having serious second thoughts.
I have been seeing a CFS Specialist for 1 year now & the various treatments, both alternative & prescription, have done absolutely nothing for me. In fact, I am worse than 1 year ago.
After seeing my CFS Specialist next week, I am going to make a decision about going back to the rheumatologist.
 

Gingergrrl

Senior Member
Messages
16,171
You could try Rituximab cost effectively by 'faking' rheumatoid arthritis.

Can you get tested for other auto-antibodies that could respond to RTX "off-label". Technically when one of my closest friends tried RTX for lupus, it was "off label". And my infusion center said unless people are using as part of R-CHOP (a chemo regime), then it is almost always "off-label". So it can be done. My request to my insurance (later) specifically says that I do not have CFS (which my doc and I both believe that I do not) but I have every auto-antibody under the sun and auto-abs are B-Cell dependent. If you don't test positive for ANA titer and various auto-abs, this won't work. But if you do, it might be another way to go and I'd hate for someone to take steroids and methotrexate if they didn't need it, which I believe both need to be tried and to have failed, before RTX is given for RA.
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
Hi @Kenny Banya - right now I think it would be too hard for me tolerate rituximab and all its effects, plus other stuff you have to take with it. See this thread: http://forums.phoenixrising.me/inde...nyone-who-has-tried-rituximab-mabthera.49831/

But I'm not making any recommendations for anyone else here. I have made some progress with this illness over the last 18 years, primarily due to several particular supplements and a LOT of self-experimentation, and muscle testing which has helped guide me along.

My sister has RA and is taking prednisone. She was on methotrexate as well, and also remicade, but for the past several months has been able to get by with prednisone and advil, for which I am very glad. Anyways, your idea of faking RA is interesting but I think would be very difficult to do with a knowledgeable doctor. They also go by your CRP or other blood work, and mine is very low. And I don't have pain or swollen joints, so no indications of anything like RA. Having said that, my sister wondered if her doctor could use it off-label for me for ME/CFS when I explained about the Norwegian studies, and wondered if off-label ise would be covered by Medicare. But it's not something I'm going to look into right now.

For people with MEC/FS, I really wish we had the research which would allow us to know who would benefit from rituximab - if they were able to tell ahead of time who would be a responder, and I was one of them, I then I'd consider it. But I have a very low tolerance for medications and cannot imagine how I would react to a drug like this.
 

Kenny Banya

Senior Member
Messages
356
Location
Australia
Can you get tested for other auto-antibodies that could respond to RTX "off-label". Technically when one of my closest friends tried RTX for lupus, it was "off label". And my infusion center said unless people are using as part of R-CHOP (a chemo regime), then it is almost always "off-label". So it can be done. My request to my insurance (later) specifically says that I do not have CFS (which my doc and I both believe that I do not) but I have every auto-antibody under the sun and auto-abs are B-Cell dependent. If you don't test positive for ANA titer and various auto-abs, this won't work. But if you do, it might be another way to go and I'd hate for someone to take steroids and methotrexate if they didn't need it, which I believe both need to be tried and to have failed, before RTX is given for RA.
I already tried corticosteroids (Solone/Prednisone) in the initial stages of my joint pain, but it did nothing. The insomnia it caused was very annoying, hence why you have to take it first thing in the morning.
In Australia, health insurance companies have no say in treatments. Its the doctor's say & the drug is government subsidised in advance when you pay. Health insurance companies only provide rebates for private surgery & treatment (when you don't want to be on a public waiting list & hence want to shorten the time & potentially get better treatment)
 

Gingergrrl

Senior Member
Messages
16,171
Anyways, your idea of faking RA is interesting but I think would be very difficult to do with a knowledgeable doctor. They also go by your CRP or other blood work, and mine is very low. And I don't have pain or swollen joints, so no indications of anything like RA.

@Mary I agree with you and I'd think this would be very hard to pull off. In my case I am negative on rheumatoid factor abs and I have never had joint pain in my entire life. I have muscle pain almost every day in my neck, right shoulder, right arm and often in my calves. But never any joint pain, swelling, or redness.

For people with MEC/FS, I really wish we had the research which would allow us to know who would benefit from rituximab - if they were able to tell ahead of time who would be a responder, and I was one of them, I then I'd consider it. But I have a very low tolerance for medications and cannot imagine how I would react to a drug like this.

IMO, the responders (whether they have ME/CFS or another diagnosis) are the people with B-Cell mediated auto-antibodies that can be knocked out by RTX. If I did not have proof of these auto-antibodies, I would not even be considering it. From everything that I have heard, I do not think it will be that bad. My doctor said that it is like a "walk in the park" compared to the high dose IVIG that I do every three weeks. I have no idea if this is true but the IVIG has been easy for me (except for the first infusion in which the speed was too fast and I got an excruciating headache for ten days until I went to the ER). But that was back in July and ever since then, the IVIG has been okay.

In Australia, health insurance companies have no say in treatments. Its the doctor's say

In the U.S. it is the polar opposite and the insurance companies have total control and are the ultimate decision makers and not the doctors. A doctor could make a rock solid case on why a medication is medically necessary (even to save someone's life with a rare cancer, or even for a little baby) and the insurance can deny it. It's the biggest flaw in our system IMO.

ETA: There are many other flaws, too, but I will not get started with this.
 

Kenny Banya

Senior Member
Messages
356
Location
Australia
In the U.S. it is the polar opposite and the insurance companies have total control and are the ultimate decision makers and not the doctors. A doctor could make a rock solid case on why a medication is medically necessary (even to save someone's life with a rare cancer, or even for a little baby) and the insurance can deny it. It's the biggest flaw in our system IMO.

ETA: There are many other flaws, too, but I will not get started with this.

I take a lot of interest in US politics & society.
No offence, but the way you treat your sick, vulnerable & poor is disgusting. Luckily, Michael Moore's Sicko made your society a bit more aware, & Obamacare was a step in the right direction.
However, the capitalist mentality has been taken too far, thanks to the communist/socialist fear mongering since Senator Joe McCarthy. The poor social safety net is a travesty.
I would never want to live in the US.
I fear Australia one day adopting the incentive based & user pays medical system, because we are becoming a more Conservative society (mainly because of the 'low hanging fruit' of muslim/terrorist fear mongering).
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
IMO, the responders (whether they have ME/CFS or another diagnosis) are the people with B-Cell mediated auto-antibodies that can be knocked out by RTX. If I did not have proof of these auto-antibodies, I would not even be considering it. From everything that I have heard, I do not think it will be that bad. My doctor said that it is like a "walk in the park" compared to the high dose IVIG that I do every three weeks. I have no idea if this is true but the IVIG has been easy for me (except for the first infusion in which the speed was too fast and I got an excruciating headache for ten days until I went to the ER). But that was back in July and ever since then, the IVIG has been okay.

@Gingergrrl - thank you for this info! I knew there was some testing re antibodies but my brain seems to shut down when I read about antibodies. :confused: I think I need to make more of an effort. Is your doctor an immunologist or rheumatologist, or something else? I guess it would be good to get this testing done.

Interesting your doctor says it would be a walk in the park compared to the IVIG! I'm glad to hear that for you and hope you are able to get rituximab.
 
Messages
16
My experience with RTX was that it was easier too take than IVIG . MAybe because I had IVIG first and RTX second that is the case. RTX may help those with autoimmune issues as you can see it been in trial for MS and RA. In the US Rhuemetologist will not go near RTX when it's not been FDA approved for them to use. VEry few doctors would take a chance using RTX off label thus you have people flying from all over the world to the few places that are willing to provide. I would be surprised if a US insurance company would ever reimburse a non approved drug. The thing is it will take years for the FDA to approve RTX for anything other than what it is currently being used for . The thing that gets me is if RTX was so great treating CFS/ME why is the drug Maker not putting it through the process to get FDA approval the same way Lyrica was put through for FM. There are so many drugs that are approved and no one knows why or how they work. There is more to this RTX story than we are being told.