My Rituximab experience with RA and ME

[Nielk]

It's funny that you call me brave because I remember about two years ago, answering a poll on Rituximab here on PR. It was asking whether if the possibility existed, would've agree to try Rituximab. I had answered- no. The reason being that I was so sick and was afraid to take the chance of exacerbating my condition.

I had read some first hand accounts if ME patients trying it and feeling really worse. I just couldn't phantom that.

Now two years later, things have changed for me. Because of my diagnosis of RA and an pretty aggresive course, I have a different evaluation now.

So far other RA meds have not reversed, nor stopped the progression. I am facing a real possibility of becoming somewhat crippled and eventually affecting other body parts.

In face if this possibility, my view for myself has changed. In addition, I gave since heard of many who either had slight side effects or none.

I have heard of ME patients for whom Rituximab is helping quiet impressively.

Thank you for calling me brave though. I enjoyed that !

 

[NK17]

It's funny that you call me brave because I remember about two years ago, answering a poll on Rituximab here on PR. It was asking whether if the possibility existed, would've agree to try Rituximab. I had answered- no. The reason being that I was so sick and was afraid to take the chance of exacerbating my condition.

I had read some first hand accounts if ME patients trying it and feeling really worse. I just couldn't phantom that.

Now two years later, things have changed for me. Because of my diagnosis of RA and an pretty aggresive course, I have a different evaluation now.

So far other RA meds have not reversed, nor stopped the progression. I am facing a real possibility of becoming somewhat crippled and eventually affecting other body parts.

In face if this possibility, my view for myself has changed. In addition, I gave since heard of many who either had slight side effects or none.

I have heard of ME patients for whom Rituximab is helping quiet impressively.

Thank you for calling me brave though. I enjoyed that !

It is typical of a smart person to change point of view and make decisions based on sound and scientific assessments.

I consider you a smart fellow ME sufferer and if my most recent lab tests were showing anything of auto-immune nature I would also change my mind and consider Rituximab.

I'm still in the painful ME purgatory, getting worst, with escalating aches and pains and no classic auto-immune marker ...

So to go back to you being brave dear Nielk, I must add that you're also smart!

 

[IreneF]

My only pieces of advice to you are to wash your hands before you eat and if you handle anyone else's dirty dishes or laundry. I wore plastic gloves. Avoid kids and sick people. In fact, avoid people. Don't let strangers touch you. I got extremely paranoid when I went to the hospital for blood tests, especially if anyone was coughing. Nothing like being in a waiting room full of sick people. Sleep alone if you have a partner who gets sick.

 

[Kati]

While practicing good hygiene and staying away from sick people are good practice, in general Rituximab given as a single agent (not given with other chemo, or Prednisone) is very safe. There is no need to wear a mask in public area for instance.

 

[Bob]

Yes, I seem to remember that infection wasn't a major problem in the Norwegian Rituximab trial.

 

[Nielk]

Yes, I seem to remember that infection wasn't a major problem in the Norwegian Rituximab trial.

I might be at an added risk because I am also taking Methotrexate and Prednisolone. At the other hand, I am pretty much isolated because of the fact that I am mostly housebound. I guess I will hve to tell my grandchildren not to come over when they are sick - which is good idea in general anyway.

 

[IreneF]

I might be at an added risk because I am also taking Methotrexate and Prednisolone. At the other hand, I am pretty much isolated because of the fact that I am mostly housebound. I guess I will hve to tell my grandchildren not to come over when they are sick - which is good idea in general anyway.

I was told to avoid children.

I got one, maybe two colds. It was the nastiest cold I've had in my adult life. I got it from my husband, who agreed that it was unusually vicious. But it never spread beyond the upper respiratory tract.

 

[Kati]

I might be at an added risk because I am also taking Methotrexate and Prednisolone. At the other hand, I am pretty much isolated because of the fact that I am mostly housebound. I guess I will hve to tell my grandchildren not to come over when they are sick - which is good idea in general anyway.

@Nielk just pay attention to signs of infection and if the dr want you to have blood work, to get them done. A simple cbc with break down of white blood cell will give you a lot of info whether you are neutropenic and in that case (neutrophils less than 0.5) accompanied by fevers or infections should all be reported and cared for by a physician immediately.

 

[Tired of being sick]

CFS/ME is an autoimmune disease
and I am treating it as one

I am convinced

If it quacks like a duck

it is a DUCK!!

 

[heapsreal]

CFS/ME is an autoimmune disease
and I am treating it as one

I am convinced

If it quacks like a duck

it is a DUCK!!

Some autoimmune diseases such as MS are now using antivirals with some success. I'm not sure we could exclusively say it's autoimmune or infectious????

good luck with what you try. We don't know until it's tried. Keep us updated on what u try and how you go.

 

[Jonathan Edwards]

I might be at an added risk because I am also taking Methotrexate and Prednisolone. At the other hand, I am pretty much isolated because of the fact that I am mostly housebound. I guess I will hve to tell my grandchildren not to come over when they are sick - which is good idea in general anyway.

I am glad to hear that you have had the treatments without major problems. In fact the scratchy throat and coughing we always thought was due to the drug doing its work on the tonsil B cells - not an allergy but a sign that things were going to plan. You have an excuse to keep sick grandchildren away but the risk from infection does seem to be very low after rituximab - humira is a much more significant problem. Avoid chicken pox kids - they are often not ill themselves and it does look as if shingles might be one thing that is easier to get after rituximab. (Shingles is due to the same virus.) The Haukeland team are rituximab experts and designed a slightly different treatment regimen for sensible reasons but there is every reasons to think that what is standard for the RA will also be relevant for ME, since it is all about removing B cells.

The cheaper biosimilar situation is a bit muddled at the moment. Generic versions of the same antibody have been around for several years. The real issue is quality control to ensure there are no extra adverse reactions. There is a story that this has already been a problem but it is hard to know what has really happened.

 

[IreneF]

There was someone who posted a few months ago who had serious problems with ritux. She got a lung infection--does actinomyces ring a bell?--but I don't remember her name or the thread.

I always suspected that any generic versions would be faced with manufacturing issues. It's not like most drugs, where you can stir everything into a big vat and extrude pills (artistic license here). It's "pharmed" from a genetically engineered organism.

 

[Nielk]

I am glad to hear that you have had the treatments without major problems. In fact the scratchy throat and coughing we always thought was due to the drug doing its work on the tonsil B cells - not an allergy but a sign that things were going to plan.

Thank you for this reply! I didn't know this and I don't think that the doctors/nurses at the infusion place had any clue either. They just assumed its an allergic reaction. It's good to know.

So far, I am about a week past my second infusion and feel the same. The only change I might be feeling is that my hands don't feel like they are burning/on fire as much. The swelling and pain are still there but, my hands used to feel so hot all the time (like they just came out of the oven) and today, it is not as bad. I hope that's a good sign.

I am loosing a lot of hair but, I have a feeling that it's more due to the Methotrexate than the Rituximab. My headaches which hitsorically for me get really bad at times, have been peaking lately but, that is not so unusual for me,

 

[optimist]

@Nielk Did you see this: http://forums.phoenixrising.me/inde...tion-to-the-research-council-of-norway.31258/

It seems that the effect normally will kick in three months after the first infusion.

 

[Jonathan Edwards]

Thank you for this reply! I didn't know this and I don't think that the doctors/nurses at the infusion place had any clue either.

Put a word in their ear next time you visit (from the horse's mouth.)!

So far, I am about a week past my second infusion and feel the same.

Don't expect much immediately, but sometimes there are hints very early on. For RA you can usually tell at 3 months where things are going - and for most people that's better. For ME it looks as if it may be similar but I have no first hand experience.

I am loosing a lot of hair but, I have a feeling that it's more due to the Methotrexate than the Rituximab.

Rituximab has never affected hair to my knowledge. Methotrexate produces something called telogen effluvium. What this means is that instead of hairs falling out and starting again at random as they normally do all the time, they all decide to fall out and start again together. Note that they still start again and in the long term there is no difference but you can go through a period when your hairbrush is full of hair for a fortnight, which can be a bit alarming!

 

[MeSci]

I keep forgetting what Benadryl is but thought it was a brand name for diphenhydramine - and just checked and it is (in case anyone else didn't know). I use a UK med with the same active ingredient - Boots Sleepeaze, or Nytol, for sleep. It reduces muscle tension and nausea as well as being an antihistamine and sedative.

 

[Nielk]

I am just checking in here again.

It has been almost 5 weeks since my first infusion. I had my rheumatologist follow up appointment yesterday. I told her that the only improvement that I have been feeling is that my hands don't feel burning hot all the time anymore. They are still swollen and painful though. All my other symptoms remain the same. She sounded somewhat disappointed with my lack of success. I told her that I have heard that it could take three months to really feel a difference. She said that if that was the case, it would not make sense to take the Rituximab because by month 4 the action of Rituximab wanes, so for just a month of relief, it would not make sense to take it.

In addition, I told her that I think the Methotrexate/folic acid which was started at the same time as the Rituximab does not agree with me. I take the Methotrexate once a week and for two or three days later I suffer from nausea and stomach problems. I told her that it might be the folic acid since I have a problem with methylation. She was not familiar with methylation and wanted to know how I knew that I had a methylation problem. I told her that I had the 23andme genetic testing done (which she heard of) and the results showed a genetic methylation problem.

She looked it up right there on the computer. By the way, this is why I really like her. She actually listens and is eager to learn (even from a patient) which you don't see much with doctors today. She found a pharmaceutical site which after reading it, she told me that it's not only on the folic acid but, it might be that the methotrexate is toxic for me. She told me to discontinue both and lets see how I do without it.

I might have to add something else to replace it but, she first wants to give my body a rest and see what happens.

She also took blood work again and some type of specialized test to see if Rituximab is dong its job in my body.

So, this is all I can report at the moment. I wish it was better news but, i am taking it one day at a time. (as if we have a choice and skip some!)

 

[Jonathan Edwards]

Dear Nielk,
The important thing is that nobody should be expecting more at this stage. You were right to say that it can take three months to feel a difference. In my experience with RA patients often felt things were going in the right direction by 2 months but it is not until 3 months that one starts to see a clear cut change. Your doctor had her months wrong a bit! Almost nobody shows a relapse before their B cells come back. In very rare cases that can maybe be 4 months but for the great majority of people it is 6-9 months. (You could take this to your doctor I guess. Honest guvnor, this is from the oldest horses mouth in the business!) When B cells come back about 50% of patients get a relapse within a month. So about 50% of people need to have their rituximab about once every 6 months. The other 50% continue well for anything from a year to five years (someone has said they have had an eight year remission on one cycle.) In practice a lot of patients have a regular remission period of say 1 year, and we would give them rituximab every 11 months to keep ahead of the relapse. One lady I remember who had rituximab right at the start we managed to treat like this without relapses for about ten years. There are probably a lot more now but I forget. Other patients would stay well for 4 years and we would wait for signs of relapse and catch it as soon as we could.

What is true is that for people who get only 6 months remission the close repeat cycles can lead to low antibodies or just be rather disorganising to arrange so often. These people were more likely to try something like tocilizumab instead, but 6 monthly treatments can work fine for some. What you have to do on the first cycle (which you have had) is just wait and see when symtpoms reappear (assuming they improve, which they have a good chance of doing). The trick is then to retreat as quick as possible to stop the disease winding up again and then to plan for further treatments on the basis that most people get the same remission time each cycle. (Which is interesting and we do not understand, although there are some theories.)

Looking back - your first infusion was June 19? Really only a month on the calender. I would wait until August 19th and then ask yourself - is there a hint that things are going in the right direction. Even if not then, hold on because for the first cycle full improvement can take 9 months. It is quicker on later cycles.

 

[Nielk]

Thank you @Jonathan Edwards

It is great to hear from "the oldest horses mouth in the business".

It is comforting to hear that I can still be hopeful and that I am right on track. It is also good to know that the effect can actually last much longer.

You made my day!

 

[NK17]

Dear Nielk,
Hang in there (in your body , on my side I'll keep all my fingers crossed, I've a feeling that at some point in the near future you'll start to feel better.

Although I'm no where near the Rituximab treatment for my case of ME (diagnosed by Dr. Kogelnik ICC/CCC), I feel blessed to get all the insightful informations from @Jonathan Edwards and you.

Thank you, thank you, thank you to both of you. Without good people like you I would feel more alone.

So glad to hear that your rheumatologist listens to you: the patient. I recently saw my rheumatologist @ Ucla, I can only say good things about him too, he doesn't know ME, but he's willing to listen and learn. This time I handed him a copy of the ICC, a copy of Fluge and Mella's study (PlosOne Nov. 2011) and a summary of all the work that is being done @Stanford.

I can only hope that one doctor at the time, we gently educate them, for us and for the next unfortunate case of ME that they will encounter.

Please continue to keep us posted.