Any chance you could get thorough labs run on your B cells or autoimmune antibodies? Even the most conservative doctor should be able to see that your response to Rituximab is a good reason to look into those. If they think ME is a psychosomatic or "just fatigue" disorder, playing the misdiagnosis card might help.
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My Rituximab experience for ME
- Thread starter funkyqueen
- Start date
Biarritz13
Senior Member
- Messages
- 699
- Location
- France
Have you tried to talk to the doctor who is in Angers?
Gingergrrl
Senior Member
- Messages
- 16,171
@Valentijn I had the same thought as you and wanted to ask @funkyqueen, prior to trying RTX, were you tested or determined to have signs of autoimmunity like a positive ANA titer, specific autoantibodies, or anything showing your immune system was more on the autoimmune side like never, ever getting flu/fever or having severe allergies/MCAS reactions etc?
I am really serious about trying RTX b/c I have clear documented signs of autoimmunity and wonder if you had that too (or if you were tested for it?). I was also curious if you did the traditional autoimmune dosing vs. the newer ME/CFS protocol dosing?
Either way, am so sorry you lost all the gains you made but it is great that you were a responder and maybe some way to still get it. I had three docs tell me an absolute No on IVIG and now I have three docs saying yes (just held up with insurance bureaucracy at this point) so keep trying and your persistence might pay off.
Really sorry Funkyqueen,
to hear that the good effects have worn off.
I've been in contact with a cancer patient with ME (had NH Lymphoma) and had 5 months of ME being in remission after Rituximab. Their symptoms are now all back again.
It does sound as if we will need the maintenance doses over a long period that the team in Norway seem to be looking at.
Snow Leopard
Hibernating
- Messages
- 5,902
- Location
- South Australia
Sounds frustrating, caught in limbo once again! I wish doctors and health authorities would start listening!
morse27
Senior Member
- Messages
- 123
- Location
- NORTH of FRANCE
@funkyqueen ; It is possible to obtain the generic rituximab on Mumbai in India with the help of medical oncologists for a few hundred dollards, you know very well, it was your first solution before the OMI .Many also cheaper.
if rituximab was effective on me, I will be already in the chair for infusion .
if rituximab was effective on me, I will be already in the chair for infusion .
funkyqueen
Senior Member
- Messages
- 123
- Location
- South of France
Thanks a lot for yours supportives messages, they are much appreciated !
Unable to answer for the moment, as i have some computer keyboard's problems/ etc
Unable to answer for the moment, as i have some computer keyboard's problems/ etc
morse27
Senior Member
- Messages
- 123
- Location
- NORTH of FRANCE
So sorry to hear this @funkyqueen! I can't imagine how it must feel to have experienced an improvement, know for sure what your body needs - and still being denied any help mantaining it. Stay strong!
Jill
Senior Member
- Messages
- 209
- Location
- Auckland, NZ
@Gingergrrl
Hi, I never get the flu or colds - sometimes I feel like I'm about to get it but it never eventuates. I've been like this for years. Ill with ME for 35 years. Is this really a sign of autoimmunity ? I've reported it to our so called specialist and she says nothing. All the other severe ones here in NZ say the same thing. I went from catching everything in my teens to nothing. Mike Holmes said the farmers down in tapanui knew they were improving if they got colds. I have had a cold about 10 years ago and during it I felt really really well. The only other times I've had remissions is post surgery ( appendix rupture mess up). I remember the day it all seeped back into me. I know it can go and I bet I'd be a responder. We even have a private cancer treatment place here in Auckland but they don't wanna risk it . I find these attitudes appalling . They try experimental treatments on cancer patients who are dying - what's the difference - we aren't living, but they don't believe me when I tell them and so called ME specialist does nothing to advocate for us here . I frankly don't see why she gets sent to conferences. Complete waste of money. Her write ups are a shocking mish mash of abstracts . The writers on here do a far better job . If I wasn't dependent on her for welfare signature I'd have left the practice years ago .
Hi, I never get the flu or colds - sometimes I feel like I'm about to get it but it never eventuates. I've been like this for years. Ill with ME for 35 years. Is this really a sign of autoimmunity ? I've reported it to our so called specialist and she says nothing. All the other severe ones here in NZ say the same thing. I went from catching everything in my teens to nothing. Mike Holmes said the farmers down in tapanui knew they were improving if they got colds. I have had a cold about 10 years ago and during it I felt really really well. The only other times I've had remissions is post surgery ( appendix rupture mess up). I remember the day it all seeped back into me. I know it can go and I bet I'd be a responder. We even have a private cancer treatment place here in Auckland but they don't wanna risk it . I find these attitudes appalling . They try experimental treatments on cancer patients who are dying - what's the difference - we aren't living, but they don't believe me when I tell them and so called ME specialist does nothing to advocate for us here . I frankly don't see why she gets sent to conferences. Complete waste of money. Her write ups are a shocking mish mash of abstracts . The writers on here do a far better job . If I wasn't dependent on her for welfare signature I'd have left the practice years ago .
Snow Leopard
Hibernating
- Messages
- 5,902
- Location
- South Australia
No. Autoimmunity will not reduce your likelihood of coming down with an infection.
how long are the remissions now?
by poor innate immune system - do you mean t cells or nk cells or both?
Rebecca2z
Paradise, Ca
- Messages
- 248
- Location
- Paradise Ca
Oh @funkyqueen, I am saddened to hear about the RTX not being available to you anymore. I know when my B cells return I also return to my bedridden state. Yes I have recently been dx with APECED, but that dx is questionable.
What is not questionable is the ME I have suffered from since my early 30's.
Like you the RTX is not a cure for all the ME symptoms but it does improve many of my complaints.
My biggest improvements are in my fatigue, ability to recover from exertion, and all malfunctions of my autonomic nervous system ( including eating ) Basically improvements in things that allow me to stand up.
To have relief from that hell only to return to it and know something like RTX can help but no doctor willing to give it to you is unimaginable. I hope you can find the strength to push the powers that be to help you.
I know it's not worth much, but my thoughts and total understanding are with you.
Gentle Hugs,
Rebecca
What is not questionable is the ME I have suffered from since my early 30's.
Like you the RTX is not a cure for all the ME symptoms but it does improve many of my complaints.
My biggest improvements are in my fatigue, ability to recover from exertion, and all malfunctions of my autonomic nervous system ( including eating ) Basically improvements in things that allow me to stand up.
To have relief from that hell only to return to it and know something like RTX can help but no doctor willing to give it to you is unimaginable. I hope you can find the strength to push the powers that be to help you.
I know it's not worth much, but my thoughts and total understanding are with you.
Gentle Hugs,
Rebecca