• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

My Rituximab experience with RA and ME

Nielk

Senior Member
Messages
6,970
I am starting this thread as suggested by other members.

For those who don't know me, I have been a long time member here. I have been suffering with moderate to severe ME for the past 11 years. I had sudden onset of the disease and was diagnosed by a ME/CFS expert. I fulfill the CCC and ICC criteria.

My level of functioning fluctuates between mostly housebound and mostly bedbound. Throughout the 11 years, I have had a few windows of better functioning when I have been able to for example plan and attend two of my children s weddings. At other times, I had been mostly bedbound for months at a time.

About six months ago, I have been diagnosed with Rheumatoid Arthritis (RA). This is a systematic autoimmune disease that mainly attacks the small joints.

Over a year ago, I started to feel swollen all over my body as if I was retaining a lot of water. My doctors didn't know why. After a while, I noticed that my finger and hands were especially swollen. MY GP was not concerned. He said many of us have our hands swell in the heat. My hands were swollen and painful with the AC blasting away.

When my ANA came back positive from routine testing, I was referred to a rheumatologist. He was very thorough with his labwork and found that I had markers for inflammation. My RA factor was negative but the more distinctive marker for RA - anti-ccp came back pretty high. He also sent me for a sonogram of my hands which showed inflammation in my wrists and knuckles. He gave me a diagnosis of RA.

He said it is very important to treat this aggressively at diagnosis in order to prevent permanent damage. So far, I have been on (and am still taking) Prednisolone (steroid), Paquenil (antimalarial med) and Humira (anti TNF). I have had no relief and the disease has been progressing.

I have now swelling and pain in my feet an ankles. I also have a stiff/painful neck. (not sure if attributable to RA). After discussions with my rheumatologist and taking into account my ME, we decided to tray Rituximab for me. I have just been approved by my insurance and am scheduled for my first infusion next week.

I will try to post here my journey with this, as some have voiced interest. I just want to caution all that this is by no means an official study. It is just my personal experience. In addition, I do suffer now from both ME and RA so it will be somewhat confusing as to how it is affecting each one.

In that vain, I am working on preparing a worksheet outlining all my symptoms that are due to ME and those attributed to RA. There might be some overlap but, there are enough distinctions, I think, to be able account for each.

I am of course exited about the possibilities here, although cautious and somewhat nervous about possible side effects/complications.
 

Nielk

Senior Member
Messages
6,970
The plan is to get my first infusion next Thursday and my second one two weeks later. Each infusion will last 51/2 hours. This treatment will be repeated in six months.

I feel confident with my rheumatologist since she is part of an outpatient clinic connected to a major hospital here in Long Island, NY. They have a whole department where they just do infusions.

At my last appointment, I was given a tour of the facility where they will do the infusions. It is large, very modern and looks really comfortable. They have separate cubicles for each patients with recliners, tv's, magazines and they told me they have wi-fi, so I can bring my computer if I want.

They said they will give me tylenol, zyrtec and steroids before the infusion to minimize side effects/allergies to the infusion.
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
Good luck! I had a series of ritux infusions with no problems, except for a bit of a fever after the first one. I slept thru them because they put benadryl in my IV. It took about an hour to drive home, and I would just nod out, which drove my husband nuts, because he likes to talk along the drive.

Unfortunately, I got only a few weeks of CFS/ME symptom remission.
 

Nielk

Senior Member
Messages
6,970
I have outlined a spreadsheet on google docs with a list of my symptoms in order to keep track of them. I have set it for public viewing and enabled commenting. I would welcome comments as to how I might improve this.
I hope you can view it here.
 
Last edited:

Nielk

Senior Member
Messages
6,970
Good luck! I had a series of ritux infusions with no problems, except for a bit of a fever after the first one. I slept thru them because they put benadryl in my IV. It took about an hour to drive home, and I would just nod out, which drove my husband nuts, because he likes to talk along the drive.

Unfortunately, I got only a few weeks of CFS/ME symptom remission.
I'm sorry your remission was short lived. Did you try a second round?
 

NK17

Senior Member
Messages
592
May your RA be a blessing in disguise dear Nielk!

Let's keep in mind that Prof. Mella and Dr. Fluge at first serendipitously stumbled upon Rituxan as a therapy to modify ME while treating a patient that had lymphoma on top of ME ;).

Sending you all my best thought.
 
Last edited:

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I wish you the best of luck.

Remission from ME symptoms is usually not permanent, but in a small percentage of cases it appears to be very long lasting. I hope you are in that group.

For everyone else, Rituximab gives some weeks to months of reduced symptoms. It needs to be given on a different schedule to that used for RA, and the science is not adequately advanced enough for us to be sure how to use it for ME most effectively. That is one of the points of the Phase 3 clinical trial, to begin answering that question.
 

Nielk

Senior Member
Messages
6,970
I am getting ready for my first infusion tomorrow morning. I am actually excited about it. I am realistic though and am anticipating feeling worse before feeling better. (hopefully)

I have worked on organization all my lab and imaging results that show any abnormalities, that I could find, on a worksheet here.

I don't know if I can expect any change after Rituximab but, it was worthwhile for me anyway to have it all in one place.