Gingergrrl
Senior Member
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IVIG probs. Rtx is tried with no effect.
I want to hear more about this and hoping it is okay to send you a PM. Am sorry that you had no effect from RTX. Do you think you will try IVIG?
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IVIG probs. Rtx is tried with no effect.
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.
I would want the treatment of letting healthy people live in our shoes for 15 minutes if there was such a way!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?
Not worth it, a year is necessary, no one who hasn't had their life destroyed by this condition can truly understand.I would want the treatment of letting healthy people live in our shoes for 15 minutes if there was such a way!
Can we specify those healthy people? Politicians and the superwealthy/powerful would be most effective.I would want the treatment of letting healthy people live in our shoes for 15 minutes if there was such a way!
You could try Rituximab cost effectively by 'faking' rheumatoid arthritis.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 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.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.
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.
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.
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.
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.