Considering Rituximab

[ShannonB]

Hi friends - I have SLE, Reynaud's and Sjogrens. I am mid 40s and was diagnosed age 12. I spent many years in remission without meds but badly flared after stopping breastfeeding when my daughter was 12 months old. For the past 10 years I've been medicated (low dose prednisone, hydroxichloriquine, and more recently also mycophenolate mofetil). These drugs and every effort at healthy lifestyle have helped me manage my disease. However - I don't have a very good quality of life. I'm constantly flaring and when one symptom subsides something else pops up. I honestly can't imagine anymore what remission might feel like. I feel I can't complain really - I can hold down a job and manage ok. But I hide how I feel nearly every day and struggle most every day with one symptom or another.

My rheumatologist suggests Rituximab may be a good option. But I don't have nephritis or any major organ involvement.

Is it realistic to think I might be able to get to remission? What experience have others had with this drug?

Thank you 🌸

[Barnclown]

Hello Shannon

Am vvvv much feeling for you

For what it's worth: one of my closest younger (30-something) lupus friends has early onset SLE & has been benefitting greatly from rituximab for several years..as far as I know she has no nephritis...but her lymph glands are affected...and she is on IVIG

If rituximab doesn't suit, you can decide to stop it. But if this treatment is on offer, and might stabilise your condition somewhat...the temptation to give it a go must be tough to resist...

I think you're referring to achieving pharmaceutically induced & maintained remission, yes?

Please keep us posted

🍀🍀🍀🍀 coco

[ShannonB in reply to Barnclown]

Thank you! Yes pharmaceutically induced and maintained remission is what I'm hoping for. Appreciate your reply!

[Hidden]

There is someone here called Weathervane who is on Rituximab for her primary Sjögren's. Hopefully she will answer your post. X

[KRutherford]

Hi , Shannon,

I also have an interest in others' experiences with rituxamab. I have just been switched from hydroxychloroquine to another anti-malarial, chloroquine in hopes of calming things down after my pleuritis /asthma/SLE flare. If it isn't effective enough or I have side effects (visual disturbance most common), then, my rheumatologist wants to go to Rituximab. As you probably know the side effect list is large and ugly with infusion reactions right up there. I had a serious infusion reaction (or allergic reaction) to belumimab so, it's hard to contemplate that again. I would love to hear stories of their inflammatory arthritis pain receding and no more fatigue and rashes all cleared up!! Hope it works for you. KR

[weathervane]

Hi shannon , i had a second course of rituximab back in January and should have the another one in next couple of months. Prior to treatment i felt very ill , i was also in constant flare and had to spend days in bed with severe pain and exhaustion. It came to a head when my lymph nodes and parotid gland all enlarged. I went round a variety of doctors and after bloods scans and biopsy i ended up with a rheumatologist who diagnosed sjogrens. The rheumy suggested rituximab after nothing else was helping and it has made such a difference. The 1st dose caused severe gastritis ( probably the steroids) but after 6-8 weeks my lymph nodes had gone down ihad less pain and more energy. The second course was easier , they slowed the drip which helped. I have got more of my life back . I still need to pace myself but life is easier. I was lucky that i have been able to tolerate rituximab and I haven't had a reaction. It is a big decision to make to go ahead with it but so far it has worked for me . I wish you all the best with making up your mind and I hope you start to feel better soon xxxx

[Maureenpearl]

Hi Shannon, I had two courses of Rituximab last year and one course the year before. I have been diagnosed with Mixed Connective Tissue Disorder which has damaged my lungs. I use ambulatory oxygen and had to wait for three years to get the funding for this drug.

After the first course I felt great and couldn't wait to have the next course, however it took weeks before I felt okay after the third course and I'm still waiting to start feeling okay. I'm not sure if I will be given any more because it had no effect this time (I was told by the doctors that it is quite usual for the drug to not work after the second course).

The next time I see my Rheumatologist I will be told what treatment I will be given. I am also waiting the result of a heart scan.

Hoping and praying it all goes well for you, God bless xx🙏🏽💐