Rituxan
Time to choose Rituxan?
7 years of symptoms and 5 years after my RD diagnosis. Three rheumatologists. Mayo Clinic consult.
Prednisone, methotrexate, azothiaprine, Arava, Humira, Enbrel, Remicade, Orencia, Actemra, Xeljanz.
Early retirement. Physical therapy. Counseling. Joint injections. Rotator cuff repair. Root canals and a dental extraction. Obesity. Poor mobility. FATIGUE.
Somehow, I have little evidence of permanent joint damage and experienced very few negative drug side effects. So, I guess I’m lucky?
I’m typically an optimist. But today I left my rheumatology appointment a little depressed. The RD is escalating. And it’s time to consider Rituxan.
Rituxan - the impression I had is that it’s the drug for when things are Bad and you’re running out of choices. It’s the one, until vaccines and Evusheld, that should be avoided during a pandemic. Unlike other biologics that attack specific parts of the immune system, it is more broad, destroys B cells and attacks the overall ability to make antibodies.
I cruised the web and our website here and saw similar histories to mine. And I read some success stories. I spoke with a family member that uses Rituxan in transplant medicine who feels it’s a good choice for me. I learned about “infusion reactions”. My Rheum had mentioned the “aggressive nature” of my RD and this possible switch at my last appointment. So I was ready to talk about it today.
What I wasn’t ready for today was the physical exam. I’m always a little surprised when a doctor sees my symptoms clearly. That’s the legacy from the first Rheum who told me “I disagree with your symptoms”. (Why does she still affect me after 5 years with a doctor who sees and treats me well?) Today’s exam started with noting my face is beginning to puff up from steroids and acknowledging my complaint about my weight. And then the joint exam showing active disease in my shoulders, elbows, wrists, hands, hips, knees, ankles and feet. My Rheum’s recommendation - time to start Rituxan. And I agree.
I’ve given up too much to this disease to not fight harder. After learning more about Rituxan, I do have some worries about infection and I don’t look forward to the first infusion. It seems it causes the most discomfort. But, honestly, what I’m most scared of? Easy question. What if it doesn’t work?
I’m taking this afternoon to take a nap, process and feel a little sorry for myself. But, as I said, I am an optimist. I expect to wake up tomorrow ready to fight harder. I’ll start looking forward to and getting impatient for the PreAuthorization to go through. And then I’ll begin to feel new hope as the first treatment nears.
My niece once told me, “That RA business, Aunty, is no joke.” My girl was right.
I’m new here, and as someone who has a similar medication history to your own, I’m curious how this turned out for you? I just started a biosimilar for Rituxan.. after going through exactly the same thought process you outlined. I’m curious if you tried Rituxan and what the results were for you? Did you see any improved symptoms?
I'm glad you reached out. I had forgotten about this post which is close to a year old now! Whew! My last year's story is long and complex, but the short version is, I had my second set of Ruxience (Rituxan biosimilar) infusions in January and I do believe it has begun to help me. I tolerated the infusion very well with minimal reaction, which was nice. The good parts: less pain, accomplishing more around the house, beginning to walk better, sleep better, decreasing my prednisone and taking less "as needed" meds. The so-so parts: still significant pain & fatigue that come and go. I have come to realize how severely deconditioned I have become. Pulling myself up out of the effects of physical inactivity is going to take perseverence and reminders to take it slow and steady.
The long story: I had my first 2 infusions in May. I was also on injectable methotrexate. That month I prepped our home of 32 years for sale. We bought a house 1600 miles away and moved into it. I literally worked myself into a deep whole with lots of physical activity, emotional stress and infections. I had a mild case of Covid, 2 rough cases of non-Covid bronchitis, a dental infection leading to a 2nd extraction and a newly diagnosed squamous cell skin cancer (the good kind that they just remove). I'm fully vacinated for Covid and have had Evusheld, which is why I believe my Covid was so mild. I had problems with dental infections and bronchitis since starting my first biologic, so I feel the Ruxience wasn't the problem. By the time my life started to settle down it was 5 months after Ruxience and I couldn't tell how to evaluate it's effect! I thought it had helped some, but wasn't sure.
Because my insurance company changed their prior authrorization policy my second set of infusions was delayed by 2 months. I was flaring quite bad by January and feeling desperate to resume treatment. 6 weeks after my second set of infusions, I feel like the Ruxience is making a big difference. It's still early and I'm really hoping this is a trend I can count on. We moved across country to be close to our kids and grandkids. I'm more optimistic that I'll be able to take part in the family activities we moved here for.
On a side note, with every infection I had to interupt the MTX. Originally I tolerated it well, but eventually I had trouble tolerating restarting the MTX. I wasn't able to stay on it long enough to adjust to the side effects. It is also a risk factor for skin cancer, so my Rheum and I opted to stop it. I haven't (knock wood) had a signficant infection since then. With the roller coaster my life has been, I really don't know what I can blame on MTX, but I'm feeling better right now off of it.
So many things in my life have changed since I wrote the above post. It's so good to look back and feel things are improving! Finally!
With Best Wishes for a Smoother Year of Improvements for You! JoThank you very much for such a detailed and helpful reply! That is very encouraging actually. I’ve had both rounds of the first infusions. I’m getting Truxima as a biosimilar. I didn’t have any reaction to the infusion. I’m hopeful from hearing your story and several others that it will show effects and improvement in the future. It still early days yet, only 1 week past my second infusion so I have a ways to go.
I’m glad you are recovering and feeling better, it sounds like you had a rough year and I relate! Cheers, to the medications working well for both of us 😀
Hi,
! I hope sees your question and is able to reply. However, we have two other contributors with long term experience with Rituxan. and Lisa Emrich have been using Rituxan for a number of years and may be able to offer some insight. Also, here's a conversation from our forums on the topic that I thought you might find useful -- https://rheumatoidarthritis.net/forums/rituxan-infusions.
I hope this information is helpful for you!
Best, Erin, RheumatoidArthritis.net Team Member.
