Rituxan does wear off :(

[Snow Leopard]

I am going this Wed for round one. I am in HORRID pain again in all joints, massive headaches, profound fatigue all the things we all complain about. The only thing that has stayed strong is my ability to think clearly.
Which is great as this has always been so debilitating.

No good at all!

I very much hope the maintenance treatment works out for you!

 

[heapsreal]

I`m not making assumptions, I talk privately to some people from the phase 1-study. Those cats, are already out of the bag. And they have been meowing healthily for several years now.

Thats great news.
I'm getting at those that dont stay in remission or those that are non responders. Or are we leaving those behind.

 

[Marky90]

Thats great news.
I'm getting at those that dont stay in remission or those that are non responders. Or are we leaving those behind.

What do you mean? I know many of the non-responders are participating in the cyclo-trials, and Mella even said at a recent conference that he thought cyclo could become the drug of choice due to cost and quick response time, and in a recent article called the results "Interesting" with a smile.

 

[shannah]

Oh @Rebecca2z

I'm so sorry to hear about this downturn.

You'll be on my mind Wednesday and will be hoping for a quick response and turnaround for you.

Safe travels.

 

[greeneagledown]

This kinda goes to show that one should follow the Haukeland-protocol, and not improvise..

Agreed. I'm not a doctor or a researcher, but waiting 8.5 months between the 4th and 5th infusions is probably too long (to the extent Ritux is being used specifically to treat ME/CFS). The Norwegians only have 3 or 4 months between the fourth and fifth infusions (depending on which protocol they've used or are using). I believe Jonathan Edwards has said b-cells start coming back around the 4-month mark.

 

[msf]

I`m not making assumptions, I talk privately to some people from the phase 1-study. Those cats, are already out of the bag. And they have been meowing healthily for several years now.

I thought everyone from the phase 1 trial relapsed? Wasn´t that why they tried increasing the number of doses?

 

[Mary]

@Rebecca2z - I'm so sorry to hear this, am sending best wishes your way for your next treatment and good results again --

Several years ago my former husband and I visited Paradise, thinking of relocating from SoCal (which we never did), but it (Paradise) was aptly named, in appearance if nothing else

 

[Sallyagerharris]

Dear Rebecca, I just want to wish you and the best and really hoping that you pull through and that this is a temporary blip. Keep hanging onto all the good bits of what has happened to keep you going ... Or try to at least. It is so horribly hard to experience again what you had hoped was behind you.

Wishing you well with lots of hugs,

Sally xx

 

[Sushi]

@Rebecca2z So sorry to hear of your painful relapse but very glad that you will be getting more doses...and soon! I hope that the good effects are the same. Even though you are not being treated specifically for ME/CFS, have your Stanford doctors read the results from Norway? I hope they are open minded and will consider the fact that you have several diagnoses and that the Haukeland-protocol might be helpful for you.

Thinking of you!

 

[Marky90]

I thought everyone from the phase 1 trial relapsed? Wasn´t that why they tried increasing the number of doses?

Many did yeah, but not all

 

[alex3619]

Thank you for giving us your experience in this.

We know this happens from the trials. Its likely there will be some patients who need to be treated indefinitely. However I think they expect that repeat treatment will increase the actual cure rate. In the meantime we are really talking about temporary remission for the majority. Its long lived plasma cells that are the hypothesized problem. Rituximab does not target them directly, and they can stick around for quite a while. If even some that cause ME, in the autoimmune or immune versions of the hypothesis, then it comes back. If a treatment gets rid of them though, then they are unlikely to come back .... with the caveat that since we are still not sure what causes ME this is only hypothetical.

The cure for MS might also work with us. This was discussed here a few years back, and there is a new thread on it. Other avenues are still being tested. Some of the newer (and more expensive) drugs might do much better, but I think cost is one reason why research is lagging. However a brand new drug, right off pharma's new product line, might in theory get pharma support, and that could fund trials. The downside is the cost of that kind of drug to patients or insurers or government would be huge.

Nonresponders are a separate issue.

 

[Marky90]

Thank you for giving us your experience in this.

We know this happens from the trials. Its likely there will be some patients who need to be treated indefinitely. However I think they expect that repeat treatment will increase the actual cure rate. In the meantime we are really talking about temporary remission for the majority. Its long lived plasma cells that are the hypothesized problem. Rituximab does not target them directly, and they can stick around for quite a while. If even some that cause ME, in the autoimmune or immune versions of the hypothesis, then it comes back. If a treatment gets rid of them though, then they are unlikely to come back .... with the caveat that since we are still not sure what causes ME this is only hypothetical.

The cure for MS might also work with us. This was discussed here a few years back, and there is a new thread on it. Other avenues are still being tested. Some of the newer (and more expensive) drugs might do much better, but I think cost is one reason why research is lagging. However a brand new drug, right of pharma's new product line, might in theory get pharma support, and that could fund trials. The downside is the cost of that kind of drug to patients or insurers or government would be huge.

Nonresponders are a separate issue.

Good post,
And another big puzzle i think is the moderate responders.. Is it due to long lived plasma cells? Or due to bad b-cells hiding in lymph nodes as well as being in the blood? Some kind of autoimmune loop that`s hard to target?

 

[perrier]

Marky90, you made reference to a recent conference, by the Norwegian doctors. Can you give a link, or a summary please.

Dear Rebecca, I know you will pick soon, because you did some months ago. Thanks for posting. Please keep updating us. I sit on the edge of my chair for news.

 

[alex3619]

Good post,
And another big puzzle i think is the moderate responders.. Is it due to long lived plasma cells? Or due to bad b-cells hiding in lymph nodes as well as being in the blood? Some kind of autoimmune loop that`s hard to target?

All good questions. We need better answers.

 

[Rebecca2z]

@Rebecca2z So sorry to hear of your painful relapse but very glad that you will be getting more doses...and soon! I hope that the good effects are the same. Even though you are not being treated specifically for ME/CFS, have your Stanford doctors read the results from Norway? I hope they are open minded and will consider the fact that you have several diagnoses and that the Haukeland-protocol might be helpful for you.

Thinking of you!

Sushi, thank you for your kind words, where do I find the Haukeland-protocol ? I think my doctor would be interested.
I do wonder if I will have as great a response as I had with the first round, I was on methatrexate and now I am not.

 

[Sushi]

Sushi, thank you for your kind words, where do I find the Haukeland-protocol ?

@deleder2k (or anyone else!) would you be able to locate this easily? I am a bit short of time. You could link it here for Rebecca2z. Thanks.

 

[Firefly_]

Rebecca, I have been following your story for many months now and think about you now and then hoping you are well. I am so sorry to hear that you are suffering again, it's kinda like going from poor to rich then back to poor again (only much worse, yeah?). Have my fingers toes and eyes crossed for you.

 

[Ellkaye]

Dear Rebecca,sorry that the rituximab didnt work any more in you.Hope that your immune system/b cells manage to regenerate again and recover again so that you can try any same/similar or different class of medication of your choice and still allow yourself a chance to recover,be it rituximab,arv's,or anything else.

 

[Ellkaye]

I think the corpus of evidence that gave the impression of rituximab being effective in ME needs to be very closely scrutinized knowing that a lot of severe debilitating arthritis may get misdiagnosed as ME/CFS for those patients in whom in can be debilitating/fatiguing/make bedridden and who look to the medical system for care,understanding,empathy.Mixed in with contradictory studies about cytokines/chemokines and which turn up and down,inconsistently through different studies on very different CFS type patients with all sorts of disease we cannot allow for big names hollywood star doctors to lead the way n give the impression/comfort to other doctors to doing wide trials on wide patient populations which could go pear shaped even,as an accepted risk.Think it all needs much better reflection.

 

[deleder2k]

@deleder2k (or anyone else!) would you be able to locate this easily? I am a bit short of time. You could link it here for Rebecca2z. Thanks.

Drug: Rituximab
Induction with two infusions two weeks apart, rituximab 500 mg/m2 (max 1000 mg).

Maintenance with rituximab infusions (500 mg fixed dose) at 3, 6, 9 and 12 months.

Other Names:

• Rituxan
• Mabthera

https://clinicaltrials.gov/ct2/show/NCT02229942