My Rituximab experience with RA and ME

DanME

Senior Member
Messages
289
My dosage of Rituxan was 1g, and the price varies, just like the stock market. 6000-6800$ a dose is where it's been.

In general people have a body surface area 1.7-2.2

Hi Kati. I am sorry, if you already told us any of this, but what was your regime? 0, 2, 3M, 6M? And what were your effects? Did you get any other drug, while being on Rituxan?
 

Kati

Patient in training
Messages
5,497
Ye
Hi Kati. I am sorry, if you already told us any of this, but what was your regime? 0, 2, 3M, 6M? And what were your effects? Did you get any other drug, while being on Rituxan?
Yes on top of the day 1 and day 15 doses at the begining. No other drugs while on Rituxan (except my regular regimen of sleeping pills, stomach pills, atenolol, etc)
 

DanME

Senior Member
Messages
289
Ye

Yes on top of the day 1 and day 15 doses at the begining. No other drugs while on Rituxan (except my regular regimen of sleeping pills, stomach pills, atenolol, etc)

But the regime didn't ease your symptoms? Did you get the infusions at the OMI? Had you any side effects? I am sorry, if you don't want to talk about it, just ignore me.
 

Kati

Patient in training
Messages
5,497
No side effects other than fairly minor infusions-related reactions. No effects. No regrets.:). I'd be keen to try intra-thecal ( in the CSF) if they were ready for that. (my idea)
 

NK17

Senior Member
Messages
592
No side effects other than fairly minor infusions-related reactions. No effects. No regrets.:). I'd be keen to try intra-thecal ( in the CSF) if they were ready for that. (my idea)
I figured you would have told us if you were in a real remission thanks to Rituximab. Still I wished you were a responder.
Your idea of going the intra-thecal route sounds very interesting and appetizing ;).
Creativity is a must, in many fields, medicine is one of them.
Too bad most doctors have their hands tied, either by the gov and/or pharma, or are simply not creative, stubborn and inquisitive.
I know it's difficult, but keep your head up @Kati, you're one brave heart, together we'll continue the search :hug:.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
No side effects other than fairly minor infusions-related reactions. No effects. No regrets.:). I'd be keen to try intra-thecal ( in the CSF) if they were ready for that. (my idea)

Might be best not to give doctors fancy ideas Kati! The B cells to kill will be in lymph node and spleen, not brain, although their antibodies may get to the brain. If you had B cells in your brain you would have MS. Rituximab is now not the best B cell killer out there. There are other antibodies that do a better job. We need to see how that pans out in other diseases but new things are coming through.
 

deleder2k

Senior Member
Messages
1,129
@Jonathan Edwards, if you had to guess, would you say that those who did not respond to Rituximab didn't have an "autoimmune ME", or could we blame Roche's Rituximab for not killing all the B cells? Seems that approximately 67% have an autoimmune disease (after Fluge and Mella's study), but it could it be way more?
 
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NK17

Senior Member
Messages
592
@Jonathan Edwards speaking of B cells, MS and Rituximab, what you make of some of us whose first tentative diagnosis was MS and have several subcortical white matter lesions?
As far as I know Rituximab is not approved for MS, but some very small study from Spain (?) had positive results treating MSrs with Rituximab.
I follow Dr. Gavin Giovannoni's MS blog and find it extremely informative and can only hope to have more doctors like him in the ME field ;).
Well actually now that we have you in our field and the game seems to be have already changed for the better ;).
 
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Jonathan Edwards

"Gibberish"
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5,256
@Jonathan Edwards, if you had to guess, would you say that those who did not respond to Rituximab didn't have an "autoimmune ME", or could we blame Roche's Rituximab for not killing all the B cells? Seems that approximately 67% have an autoimmune disease (after Fluge and Mella's study), but it could it be way more?

My guess is that it is not more than about 60% in fact. I think there will be non-autoimmune ME. However, Jo Cambridge an dI have been thinking this week that it might still be B cell dependent. This gets complicated and we need to think more but ultimately the answer to your question is that Im not betting on any particular horse just yet.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
@Jonathan Edwards speaking of B cells, MS and Rituximab, what you make of some of us whose first tentative diagnosis was MS and have several subcortical white matter lesions?
As far as I know Rituximab is not approved for MS, but some very small study from Spain (?) had positive results treating MSrs with Rituximab.
I follow Dr. Gavin Giovannoni's MS blog and find it extremely informative and can only hope to have more doctors like him in the ME field ;).
Well actually we have you in our field and game seems to be changing for the better ;).

There was a study of rituximab in relapsing/remitting MS that on brain scanning seemed to show more or less complete halting of the disease. The reasons for not taking this forward are, I suspect, complicated and at least part political within industry. I would not be surprised if there was a grey zone between MS and ME where the two clinical pictures overlap and the disease process is a bit of both.
 

NK17

Senior Member
Messages
592
There was a study of rituximab in relapsing/remitting MS that on brain scanning seemed to show more or less complete halting of the disease. The reasons for not taking this forward are, I suspect, complicated and at least part political within industry. I would not be surprised if there was a grey zone between MS and ME where the two clinical pictures overlap and the disease process is a bit of both.
Thank you so much for this specific answer @Jonathan Edwards, it elucidates some doubts I had for a while and means the world to me/ME.
 

Kati

Patient in training
Messages
5,497
Might be best not to give doctors fancy ideas Kati! The B cells to kill will be in lymph node and spleen, not brain, although their antibodies may get to the brain. If you had B cells in your brain you would have MS. Rituximab is now not the best B cell killer out there. There are other antibodies that do a better job. We need to see how that pans out in other diseases but new things are coming through.

@Jonathan Edwards I think it would be fair for patients to have access to testing the cerebro-spinal fluid and look for abnormal proteins there. There are a few papers on the matter which are leading that way, and only one ME expert who routinely tests the CSF and finds viruses leukocytes and what not. (Dr Peterson)

While I agree with you, you need to know what you are injecting into that sacred space (technically it's the lumbar space :whistle:), I think it is time for patients to have access to more advanced testing, and perhaps contemplate advanced and perhaps personalized therapeutics.
 
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Nielk

Senior Member
Messages
6,970
In two days it will be the three month mark since my first infusion. I am generally feeling the same since the two month mark but I do have a new symptom which I do not know if it has anything to do with Rituximab. (Probably not)

It started about three weeks ago that I have severe flushing of the face. It come up out of the blue. Sometimes I wake up with it at other times it just appears during the day or night. My face becomes very red and hot. This flushing, interestingly is much worse on one side of my face.

I asked my Rheumatologist about it when I saw her ten days ago but she didn't know what t was. I thought that it might just go away but now it seems to come every day. It will usually last from a half an hour to about two hours.

Any clues as to what this could be?
 

NK17

Senior Member
Messages
592
@Nielk it's good to have news from you.
I'm sorry to learn that you've still to experience any amelioration and actually have this new symptom.
I'd love to hear what @Jonathan Edwards makes of it.
I myself have been experiencing strange burning sensations very similar to what you describe and I wonder if they have anything to do with endothelial dysfunction.
I hope this new symptom will disappear as well as have an explanation.
 
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