Rituximab (I'm from Holland)

[Hip]

last question: when will the results be published?

Results made available: 2017. Study published: 2018.

 

[Jonathan Edwards]

last question: when will the results be published?

They will probably be available to us towards the middle to end of 2017, but we may have to wait until early 2018.

 

[SuzieSam]

@Jonathan Edwards
Please could you advise me, what kind of doctor should I ask to be sent to in order to have my B cells assessed? An immunologist? Could they tell me if my B cells are manically over-active or over abundant?

My high levels of TPO (thyroid peroxidase) antibodies that led to my diagnosis of Hashimoto's Thyroiditis 13 years ago - that I was told was a life auto immune disease - have inexplicably dropped to normal levels.

(My T3 levels are still too low after all these years, and I've only just now found a doctor who will prescribe me T3 here in Israel where it has to be imported privately!)

I never catch any cold or virus my kids and husband bring home, when pre-ME I did. Is this a sign of over vigilant B cells?

Thanks for sharing your wealth of knowledge and experience here - it's enormously validating for us.

 

[Jonathan Edwards]

@Jonathan Edwards
Please could you advise me, what kind of doctor should I ask to be sent to in order to have my B cells assessed? An immunologist? Could they tell me if my B cells are manically over-active or over abundant?

My high levels of TPO (thyroid peroxidase) antibodies that led to my diagnosis of Hashimoto's Thyroiditis 13 years ago - that I was told was a life auto immune disease - have inexplicably dropped to normal levels.

(My T3 levels are still too low after all these years, and I've only just now found a doctor who will prescribe me T3 here in Israel where it has to be imported privately!)

I never catch any cold or virus my kids and husband bring home, when pre-ME I did. Is this a sign of over vigilant B cells?

Thanks for sharing your wealth of knowledge and experience here - it's enormously validating for us.

Analysing B cells in autoimmune disease almost never shows anything. They are not manic or hyperactive or over-abundant. There are specific errors in the antibodies they make and you measure that by measuring the antibodies. There is no point in having B cells assessed.

At the research level we are hoping to find subtle clues from shifts in B cell behaviour in ME, because we cannot discover what if anything is wrong about the specific antibodies, but these shifts will only be measurable on populations. There is nothing you can measure in one person and say that is related to ME, at least so far.

 

[SuzieSam]

Gosh, thanks for such a prompt reply @Jonathan Edwards!

 

[Kenny Banya]

The problem is that physicians tend not to have a clue as to how complex B cell treatment is. I remember touring the US early on advising physicians and all they were interested in was the name on the drug label and how much money they would make. They were too busy to have to understand what the drug did.

Disgusting

 

[Gingergrrl]

I finally got to read through this thread, which is one of a gazillion threads that I've bookmarked to read later! This thread was extremely helpful and fascinating to me and thank you so much @Jonathan Edwards for all of your replies (and hoping you do not mind a few more questions re: Ritux)!

So if an ME/CFS patient just wanted to see if they responded to rituximab by taking say a couple of infusions, would I be right in thinking that the protocol used for these initial infusions is not that important (provided safety procedures are followed).

My understanding is that there are two main ways to dose the first two infusions of Ritux. The first is by giving one gram to all patients (like in the Fluge & Mella study) and the other is to use a formula of 375 mg/BSA (body surface area) which puts the average woman at around 600 mg (a much smaller dose). Am hoping Dr. Edwards will correct me if I am wrong on this. If I am ultimately approved for Ritux, we will be using the 375 mg/BSA formula so I will get the smaller of the two dosing options.

Out of the 14 patients who tried rituximab, only 2 had long term positive results, and 4 had serious side effects.

@Hip, do you still have the info on this, especially re: the four patients who had serious side effects? I do not need to know their names or any identifying info but am very interested in the clinical info. If you still have it, is it possible to discuss with you via PM (when you have time of course).

The problems that arise with non-trial usage are illustrated by the situation in Germany. At least ten patients were treated there but we have no reliable information about them other than that none seem to have improved and one got considerably worse. There are all sorts of possible reasons why but we will probably never know.

Is this the fairly recent study by Dr. Scheibenbogen that used plasmapheresis and other treatments or a different study?

When we give rituximab we destroy B cells indiscriminately. It is remarkable that it does not seem to lead to much in the way of infection risk. But there is every reason to think that at least in a proportion of people we will be removing useful B cells that one day will be needed.

I have always wondered about that and my doctor said that the two main infections that can reactivate are hepatitis and TB. I have never had either one so not at risk but am still doing thorough testing including a Hep DNA test and will be taking a TB test. But I never hear about other childhood infections that we get vaccinated against (like measles or mumps for example) reactivating from Ritux and I never knew why.

Doctors understand why they use it in B cell cancer but not in autoimmunity.

I do believe that there are some doctors who understand how to properly use Ritux for autoimmunity although they are probably in the minority. When I've discussed w/my doctor he understands very well the mechanism for how Ritux works vs. with my high dose IVIG, it without question improved my symptoms, even though we do not understand exactly why. So it seems like more is known about Ritux for autoimmunity than for IVIG (but IVIG is more commonly prescribed)?

When I had rtx I felt that I had nothing to lose. I was willing to take risks. It didn't do me much good, but it doesn't seem to have done any harm.

@IreneF Have you posted your story anywhere (so I can read it without asking you questions that you have already shared)? I was curious if you had any improvement or any negative side effects or infusion reactions whatsoever?

Nobody really knows because exposure to these viruses is very low in most communities. Physicians who use rituximab tend to re-inoculate for the ones that normally need boosters like tetanus. T cell responses to others may be good enough to prevent clinical infection. We do not have enough information yet.

That is interesting and I did not know that some doctors re-inoculated patients after Ritux. Wouldn't there be a risk, especially with live vaccines, of getting the disease that you are vaccinating against b/c no B cells? I thought the prescribing info on Ritux said not to even be in the same household with someone who receives a live vaccine (but maybe I did not understand)?

 

[Kenny Banya]

I never catch any cold or virus my kids and husband bring home, when pre-ME I did. Is this a sign of over vigilant B cells?.

That's funny. Someone else just like me - I have barely gotten sick since the symptoms of ME started 25 years ago. I used to think I had hyper immunity. But then some on here have suggested that my system 'just gave up'