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A List of Worldwide Verified Rituximab Providers

Messages
96
I know various sources of rituximab treatments do not wish to be made public, or are operating under individualized circumstances

For CFS exclusively:

- That one neurologist in China
- OMI
- Fluge & Mella
 
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Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I know various sources of rituximab treatments do not wish to be made public, or are operating under individualized circumstances.
Also, don't forget, Rituximab treatment is very common for other conditions, so I assume you are asking for those centers who are willing to give it for ME/CFS. I know of two ME/CFS patients who qualified through another diagnosis they also had.
 

Gingergrrl

Senior Member
Messages
16,171
I was approved for Ritux (will have first infusion in 2 wks) and at present I do not have an ME/CFS diagnosis. My doctor at OMI and my mast cell (MCAS) doctor are working in collaboration and my MCAS doctor is actually the prescriber so I can do it at the local infusion center where I have gotten IVIG for almost one year. My circumstances are a bit unusual but both doctors were so impressed by how much improvement I have made from IVIG that they both feel that I have a good chance of being a responder to Ritux (to reduce B-Cell driven autoantibodies). The biggest hurdle was getting insurance approval and it took several months but I got it.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
If its shown to be effective for ME/CFS then it should become available from almost any hospital, i believe its a common chemotherapy drug. That said your GP or specialist would have to write the script
 

Nielk

Senior Member
Messages
6,970
If its shown to be effective for ME/CFS then it should become available from almost any hospital, i believe its a common chemotherapy drug. That said your GP or specialist would have to write the script

It's not so simple. Even for RA, for the insurance to cover it, you have to show that you have tried a couple of other (cheaper) treatments for RA unsuccessfully before they will accept to cover it.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,997
It's not so simple. Even for RA, for the insurance to cover it, you have to show that you have tried a couple of other (cheaper) treatments for RA unsuccessfully before they will accept to cover it.
fair enough, but if Fluge and Mella publish a landmark study next year showing huge beneficial effects and Ron Davis provides the mechanism and the cost falls because its off patent you should be good to go.
And besides if cheaper treatments work then you will be better if they do not then you will have Rituximab to look forward to
 

junkcrap50

Senior Member
Messages
1,330
My B cells were monitored and were totally depleted for over a year.

Reading the IiME 12 conference summary here, one presenter had an idea on why some people with ME don't respond to Rituximab: "PwME who do not respond to Rituximab seem to have higher sCD23 levels (A surrogate marker of B cell maturity). This suggests that “bad” B cells had not been removed, but were still maturing in the tissues."

Hopefully, they'll sort it out soon and maybe have a solution like longer treatment on Rituximab or higher doses.
 

Gingergrrl

Senior Member
Messages
16,171
My B cells were monitored and were totally depleted for over a year.

@Nielk I was curious, did your doctor(s) decide not to do the maintenance infusions b/c you had total B cell depletion from the initial two infusions? I have heard mixed things re: this issue (and I do not know the answer and assume it varies from person to person)? My main doctor said that it is possible that I will have total B cell depletion from the first infusion of Ritux (before even doing the second) but that I will be doing the second one regardless (unless I cannot tolerate the first one and then I won't be).

He initially said that maintenance infusions were not necessary if you maintain total B cell depletion from the two infusions (and that we'd be doing serial B cell testing to monitor this). But after discussing it further, there seem to be studies (I have no idea which ones?) that imply that if you are going to have a remission, then the maintenance infusions prolong the remission and add value (even if you are already B cell depleted). Did your ME/CFS doctor or your RA doctor have any thoughts about this? Thank you in advance for any info.

Reading the IiME 12 conference summary here, one presenter had an idea on why some people with ME don't respond to Rituximab: "PwME who do not respond to Rituximab seem to have higher sCD23 levels (A surrogate marker of B cell maturity). This suggests that “bad” B cells had not been removed, but were still maturing in the tissues."

@junkcrap50 This is very interesting and thank you for sharing it. I wish I could understand it all a bit better than I do! Is there a blood test (or other test) that shows if certain people have higher sCD23 levels? There must be something in order for them to have this information but I can only assume that it is at the research stage and not for use with patients yet?

From your link it said:
Rituximab works best where there are aberrant or autoimmune Abs.
which is exactly my situation so I am hoping that I fall into the responder group (but truly no idea if I will).
 

Nielk

Senior Member
Messages
6,970
@Nielk I was curious, did your doctor(s) decide not to do the maintenance infusions b/c you had total B cell depletion from the initial two infusions? I have heard mixed things re: this issue (and I do not know the answer and assume it varies from person to person)? My main doctor said that it is possible that I will have total B cell depletion from the first infusion of Ritux (before even doing the second) but that I will be doing the second one regardless (unless I cannot tolerate the first one and then I won't be).

He initially said that maintenance infusions were not necessary if you maintain total B cell depletion from the two infusions (and that we'd be doing serial B cell testing to monitor this). But after discussing it further, there seem to be
studies (I have no idea which ones?) that imply that if you are going to have a remission, then the maintenance infusions prolong the remission and add value (even if you are already B cell depleted). Did your ME/CFS doctor or your RA doctor have any thoughts about this? Thank you in advance for any info.

I had received my first set of two infusions and was ready for my appointment six months later for my second set of two infusions. Before the infusions, I had to get bloodwork done. They called me a day before my appointment that my infusion has been canceled due to zero B cells being present. I was monitored for almost another year and my B cells had not returned.

I spoke about my experience with Dr. Mella at the IACFSME conference this year. He was surprised to hear about it. It sounds to me like this is not a common occurrence.
 

Gingergrrl

Senior Member
Messages
16,171
I had received my first set of two infusions and was ready for my appointment six months later for my second set of two infusions. Before the infusions, I had to get bloodwork done. They called me a day before my appointment that my infusion has been canceled due to zero B cells being present.

Was it an ME/CFS doctor or your RA doc who canceled the infusion? If you remember, did you have insurance approval for the next set of infusions but the doctor refused to write the prescription/order b/c your B cells remained depleted (or was it also insurance dictating the decision)?

Also, you wrote that at six months you would have had a second set of two infusions. Was it ever considered that you would have one maintenance infusion at the three month point and a second one at the six month point? There seem to be lots of different protocols out there (just for the different autoimmune diseases, not even counting ME/CFS).

I was monitored for almost another year and my B cells had not returned.

How long ago did you have the Ritux and do you know if your B cells are back now or did you stop monitoring them? I apologize if you have a blog or thread that explains all of this and I am going to try to find it.

I spoke about my experience with Dr. Mella at the IACFSME conference this year. He was surprised to hear about it. It sounds to me like this is not a common occurrence.

It sounds unusual to me as well but hearing Dr. Mella concur really backs it up (b/c I am still trying to figure out all of the different treatment protocols and scenarios). My understanding is that many people do not experience any benefit from Ritux until the six month mark. I am wondering if you had been allowed to get the additional infusions at the six month mark if you could have still experienced a benefit (either in your RA or your ME/CFS) but of course, I do not know.

My doctor feels (if I am a responder which we do not know) that I could experience a benefit much earlier than the six month mark b/c I have already done a full year of IVIG prior to the Ritux infusions (so the autoantibodies are already squashed down before we even start).

Did you have high autoantibodies for RA or other autoantibodies in addition to rheumatoid factor? Thank you so much again for the info.
 

Nielk

Senior Member
Messages
6,970
Was it an ME/CFS doctor or your RA doc who canceled the infusion? If you remember, did you have insurance approval for the next set of infusions but the doctor refused to write the prescription/order b/c your B cells remained depleted (or was it also insurance dictating the decision)?

Also, you wrote that at six months you would have had a second set of two infusions. Was it ever considered that you would have one maintenance infusion at the three month point and a second one at the six month point? There seem to be lots of different protocols out there (just for the different autoimmune diseases, not even counting ME/CFS).

It was my rheumatologist who prescribed the Rituximab. It was the hospital who canceled the next set of infusions at six months. By the way, Mella concurred that I should not have gotten more infusions with the blood work showing total B cell depletion. The protocol for RA is double infusions six months apart.
 

Nielk

Senior Member
Messages
6,970
It sounds unusual to me as well but hearing Dr. Mella concur really backs it up (b/c I am still trying to figure out all of the different treatment protocols and scenarios). My understanding is that many people do not experience any benefit from Ritux until the six month mark. I am wondering if you had been allowed to get the additional infusions at the six month mark if you could have still experienced a benefit (either in your RA or your ME/CFS) but of course, I do not know.

My doctor feels (if I am a responder which we do not know) that I could experience a benefit much earlier than the six month mark b/c I have already done a full year of IVIG prior to the Ritux infusions (so the autoantibodies are already squashed down before we even start).

Did you have high autoantibodies for RA or other autoantibodies in addition to rheumatoid factor? Thank you so much again for the info.

I was diagnosed with RA five years ago. I have symptoms and blood work shows high anti CCP antibodies.
 

Gingergrrl

Senior Member
Messages
16,171
It was my rheumatologist who prescribed the Rituximab. It was the hospital who canceled the next set of infusions at six months.

How strange that that hospital (I assume the infusion center?) canceled your appt vs. your doctor or insurance. Did you disagree and try to challenge the decision at the time or were you okay with it?

By the way, Mella concurred that I should not have gotten more infusions with the blood work showing total B cell depletion.

I'm sorry, I totally misunderstood your prior post and thought that Mella did not concur with the decision. In Fluge & Mella's studies, didn't the patients get Rituximab for over one year (maybe 1.5 years?) regardless of B cell depletion levels?

The protocol for RA is double infusions six months apart.

I wish I understood all of the different protocols. For Myasthenia Gravis (which I do not have) the protocol is to do one infusion of Ritux every week for four weeks. I wonder why they are all so different?

Also (and I apologize if you said it and I missed it) but are your B cells back now or are they still depleted? I have heard of cases where they take a very long time to come back but others where they are back within one year or less.
 

Nielk

Senior Member
Messages
6,970
How strange that that hospital (I assume the infusion center?) canceled your appt vs. your doctor or insurance. Did you disagree and try to challenge the decision at the time or were you okay with it?



I'm sorry, I totally misunderstood your prior post and thought that Mella did not concur with the decision. In Fluge & Mella's studies, didn't the patients get Rituximab for over one year (maybe 1.5 years?) regardless of B cell depletion levels?



I wish I understood all of the different protocols. For Myasthenia Gravis (which I do not have) the protocol is to do one infusion of Ritux every week for four weeks. I wonder why they are all so different?

Also (and I apologize if you said it and I missed it) but are your B cells back now or are they still depleted? I have heard of cases where they take a very long time to come back but others where they are back within one year or less.
You can read about my experience on this thread - http://forums.phoenixrising.me/index.php?threads/my-rituximab-experience-with-ra-and-me.30834/