Who is more likely to gain improvements/remission from Rituximab?

[kiwigirl29]

Hi guys,

I have been reading up online about the Rituximab trials and came across information where it says that Rituximab might be helpful in treating a subset of CFS patients who have a chronically activated immune system.

Was wondering if anyone knew what kind of CFS is more likely to be treated with Rituximab, or if anyone had any thoughts or ideas on this.
Of course we don't know for sure and can't make conclusions until studies are conclude/more research done etc., but I am very curious!

I haven't felt I've had a cold/flu or been "sick" since my CFS began (besides, the CFS symptoms I get which are flu like but I certainly haven't had a cold or an illness like I used to get in winter etc). Before CFS I got sick so often!!
Does this mean I have a chronically activated immune system?

 

[user9876]

I'm not sure what the 'chronically activated immune system' is. I thought Rituximab was used under the assumption that some form of auto-antibody is being produced and removing B-cells stops the antibody production (including the auto-antibody). The time delay being the time it takes to clear the system of plasma cells and the auto-antibodies. The b-cells are removed straight away.

As far as I have seen in the research there is no indicators as to who may improve.

 

[Gingergrrl]

I thought Rituximab was used under the assumption that some form of auto-antibody is being produced and removing B-cells stops the antibody production (including the auto-antibody). The time delay being the time it takes to clear the system of plasma cells and the auto-antibodies. The b-cells are removed straight away.

This is exactly my understanding of it and my doctor is trying to get RTX approved for me. We are not certain if CFS is my diagnosis but I have eleven autoantibodies (and most likely more that we do not know about) so we are trying to stop the Auto-Abs at production level with RTX vs. IVIG (what I am doing now) usually only being a temporary solution. If I did not have the proven Auto-Abs, am not sure that I would risk RTX but for me at this point, it is worth it.

 

[Jonathan Edwards]

I agree with user9876. 'Chronically activated immune system' has a no useful meaning in the context of ME/CFS. Having no colds probably means not coming into contact with many cold viruses that you have not met before.

 

[*GG*]

Hi guys,
I haven't felt I've had a cold/flu or been "sick" since my CFS began (besides, the CFS symptoms I get which are flu like but I certainly haven't had a cold or an illness like I used to get in winter etc). Before CFS I got sick so often!!

Does this mean I have a chronically activated immune system?

How long have you been sick overall? I was not sick alot before CFS though.

I don't get sick much either, (been CFS/ME sick for almost 14 years now) but do catch something now and then, I am pretty careful when in Public or with family. Washing my hads lots, using hand sanitizer when possible!

GG

 

[kiwigirl29]

How long have you been sick overall? I was not sick alot before CFS though.

I don't get sick much either, (been CFS/ME sick for almost 14 years now) but do catch something now and then, I am pretty careful when in Public or with family. Washing my hads lots, using hand sanitizer when possible!

GG

I used to catch everything. My husband has been sick with colds and flus and I have caught nothing this past year. I have been sick for a year and two months.

 

[Gingergrrl]

I also used to be sick all of the time (chronic tonsillitis my entire childhood, etc) but have not had a cold or flu of any kind since Jan 2013. Even when my husband and step-daughter were very sick, I never caught it from them. We all got sick in Jan 2013, they got better, but I did not. Two weeks later I had POTS and now I have every auto-antibody under the sun. I have been exposed to a million germs (I continued working in a hospital the entire first year of my unexplained illness before finally going on medical leave) but never once got sick again. I shared an office w/co-workers with strep throat but never caught it. My step-daughter was sick a lot and we shared food but I never caught anything from her. I believe my immune system was so far to the autoimmune/allergic side that it was not possible. People would say, "You are so lucky" but I felt it was bad that I could not mount a normal immune response.

 

[Belbyr]

I have been watching youtube videos of Fluge and Mella speaking about what they are doing. Some of it you have to watch in captions because of different language being used.

What I am understanding is... They seem to think that it could be the same antibodies that they are finding in patients that have autonomic disorders like POTS and other syncope disorders, for example. Research centers at Vanderbilt, Oklahoma, UT Southwestern, Toledo, Calgary, & Mayo to name a few are finding antibodies to lots of different receptors within the autonomic nervous system.

Here is a screen shot I took from one of the speeches.

The last autonomic specialist I saw for my condition told me that what I and many others are dealing with, are in fact autoimmune disorders. He mentioned how lupus has different autoantibodies under 'the relm of lupus' and each autoantibody causes a slightly different list of symptoms. He thinks we are the same way. We are all in a 'relm' but are affected a little differently case to case.

It makes sense, and I think if that's the case... It would be these people that would see improvement with Ritux.

 

[Sidereal]

Not catching colds/flus has nothing to do with not being exposed to them. I was working in a hospital (mostly geriatric ward teeming with infections) in the months/years leading up to disability. I also took public transport to work every day. I never caught anything while all my coworkers did. In recent years I've been mostly housebound but sharing a house with half a dozen people who are very frequently sick and on ABX and I never caught anything--until a few months ago when after about half a year of substantial improvement in my ME/CFS I started to get infections again like a normal person.

 

[Seven7]

Was wondering if anyone knew what kind of CFS is more likely to be treated with Rituximab,

What I understood from Klima's video, was that there are immune signatures for what a panel for autoimmunity looks like (independent of the antibody panel) the immune profile per say, points to autoimmunity. So those patients who present that (she did not gave detail as of what is that, she said they all know what that looks like) was a good candidate (about 30% of patients) She went as far as to say that if she would make a trial, she would make the profile an entry point (not that she was planning a study so far in that video). I am trying to remember exactly what video was, when I remember will update w link.

 

[Seven7]

Not catching colds/flus has nothing to do with not being exposed to them.

I never had colds in my live, until a few years in treatment into CFS, Be aware I actually have remissions when I get colds (I also got remission on Zica virus), but I am in immune modulator therapy.
The reason I didn't get it was because I was in overdrive. Note: I cannot run fevers either low TNF1 or II cant remember which is the fever cytokine, I had like 3 my whole live, ( I didn't even get it w Zica while my whole family did). I did get the conjunctivitis, rash and other symptoms... Just no fever.

 

[Gingergrrl]

What I am understanding is... They seem to think that it could be the same antibodies that they are finding in patients that have autonomic disorders like POTS and other syncope disorders, for example. Research centers at Vanderbilt, Oklahoma, UT Southwestern, Toledo, Calgary, & Mayo to name a few are finding antibodies to lots of different receptors within the autonomic nervous system.

@Belbyr I absolutely could not agree with you more !!! My doctor has diagnosed me with "autoimmune POTS" amongst other things based on my autoantibodies and we are trying to set up a phone consult with UT Southwestern.

I absolutely believe what they wrote in the slide that you posted above re: women of a fertile age, infection as a trigger, clinical response to IVIG, autoantibodies to adrenergic and muscarinic receptors, POTS, etc. This was and is a perfect description of my case.

The last autonomic specialist I saw for my condition told me that what I and many others are dealing with, are in fact autoimmune disorders.

There is no longer any doubt that my case is an autoimmune disease but it does not have an official name (yet).

It makes sense, and I think if that's the case... It would be these people that would see improvement with Ritux.

This is why I am as close to certain as possible that I will be a good candidate for RTX.

Not catching colds/flus has nothing to do with not being exposed to them.

Absolutely agree 100% with this as well. I was constantly exposed to colds/flus at my prior workplace and at home but I never caught them. If I ever catch a normal cold, ironically I will know that I am now better!

 

[Belbyr]

I have been to Toledo, Rochester (was kind of a joke), and Norfolk to see specialists in the autonomic field. You can most likely guess the specialist's names if you follow dysautonomia international seminars. So far we have not really been able to find relief for my POTS/CFS but still working on it.

 

[Gingergrrl]

@Belbyr If I could see anyone in the country who specializes in how auto-antibodies cause autonomic problems and paraneoplastic syndromes etc, it would be Dr. Steven Vernino at UT Southwestern. I also saw an autonomic specialist (won't mention who) and it was a horrible experience.

 

[Belbyr]

I would love to see Vernino. Seems like a nice guy, is obviously very intelligent too. I may call his office and see what kind of wait times... He seems to be the leader in M1234&5 autoantibodies. If his new work compares to his past work, he should make some big strides. Last I heard, he drew 150 POTS patients blood in 2016 and was going to see how many had M receptor antibodies. I have not heard an update.

 

[Gingergrrl]

I would love to see Vernino.

Me, too!

I may call his office and see what kind of wait times...

I called his office several months ago and did not actually ask about wait times b/c I was too ill to travel and knew it was not a possibility. I am much closer to the point now that I could travel but it would still be very challenging for me. Instead I inquired if he did phone consults and I was told that he did not do consults with patients that he has never seen but he does consults with other doctors. So we are trying to arrange for my doctor to consult w/him re: my case which is my dream scenario. But the treatments would most likely be what I am already doing (but we don't know that 100% and are very curious to learn more).

He seems to be the leader in M1234&5 autoantibodies.

Agreed. I test positive on M1-4 and negative on M5.

Last I heard, he drew 150 POTS patients blood in 2016 and was going to see how many had M receptor antibodies. I have not heard an update.

Wow, if you ever hear more about this, can you post it?!! My doctor thinks that all POTS is probably autoimmune at this point and I am starting to agree.

 

[Hip]

Rituximab might be helpful in treating a subset of CFS patients who have a chronically activated immune system.

If this refers to the resistance to catching colds, then a forum poll found that around 80% of ME/CFS patients have this increase resistance to catching infections, and around 15% have less resistance to catching infections (these are the type that catch everything going, and when they do catch something, the infections last for much longer, lingering for weeks or months).

 

[Gingergrrl]

If this refers to the resistance to catching colds, then a forum poll found that around 80% of ME/CFS patients have this increase resistance to catching infections, and around 15% have less resistance to catching infections (these are the type that catch everything going, and when they do catch something, the infections last for much longer, lingering for weeks or months).

So would it be safe to assume that the 80% who no longer have the ability to catch infections are more likely to be responders to RTX (autoimmune in some way) than the 15% who catch everything and are probably immune deficient and would need their B-Cells intact to fight infections?

 

[Snow Leopard]

So would it be safe to assume that the 80% who no longer have the ability to catch infections are more likely to be responders to RTX (autoimmune in some way) than the 15% who catch everything and are probably immune deficient and would need their B-Cells intact to fight infections?

No.

This difference is not meaningful unless there is a specific reason and we find out what that reason is.

Those figures could merely be a coincidence.

 

[AndyPR]

Cort talks about responding sub-groups, and the search for them, in this new blog post. https://www.healthrising.org/blog/2...me-mecfs-iacfsme-conference-overviews-part-v/