Rituximab for Systemic Sclerosis Scleroderma - Improved Mobility?

Rituximab is mainly indicated in Rheumatoid Arthritis. It is prescribed off label in Systemic Sclerosis, as it did show some efficacy with improving symptoms of skin thickening and Interstitial Lung Disease ILD.
Many scleroderma patients have reduced mobility. If you had Rituximab administered for SSc, please share your response to the drug, its effect on mobility, and your overall experience, e.g. for how long fatigue lasted post infusions, and any other side effects.

@altabiznet there are numerous articles that can be accessed through google scholar. I only read the highlights and then it got to be too confusing for me. The following 2 articles are a sample.
https://academic.oup.com/mr/article-abstract/33/6/1068/7117735
https://www.sciencedirect.com/science/article/abs/pii/S1567576920301648
One article highlighted a chemotherapy drug for use on SSc, but it is a very toxic drug and you really don’t want it. I had about 8 cycles of it and ended up in the ER after the 1st one.

I’m so sorry, it sounds like you’ve been through a lot. I’ve already discussed my recent Rituxan experience with you, but I was wondering whether your doctor has ever mentioned if IVIg is an option for your condition? I quickly googled and Dr Google says it does treat scleroderma as adjunct therapy or for those who cannot tolerate chemotherapy-based treatment.

I tried one round of IVIg in the hospital for my condition (dermatomyositis/overlap) and saw results within a week. I did unfortunately develop a blood clot in the brain a month later (I have a clotting condition and signed a waiver so I was fully aware it could happen), so we’re now in the process of getting pre-auth for a lower risk type of therapy called SCIg. So I’ll be on Methotrexate, Rituxan, SCIg, and the dreaded Medrol (after the last taper which landed me in the hospital, I won’t be tapering again any time soon!!)

Best of luck 🙂

@becsbuddy

Are you referring to Rituximab? Any more detail is appreciated: reasons to go to ER, your indication and response after 8 cycles. Thank you

@altabiznet Yes, I was referring to rituximab. I went to the ER because i was not told to stay away from tomatoes and sauces made with them. My husband had made a good dinner featuring lasagna! I commented during dinner that I had to go to the bathroom. I got as far as the bedroom when I felt like I was being viciously stabbed! Hubbie was able to quiet me down after a time and said we needed to go to ER. The doc thought that I had ruptured an ulcer in my duodenum. Talk about a scary time. I went straight home, too some pain meds from the ER, and went to bed! I was fine with the other doses. The chemo drug was cytoxan and now you know to stay away from tomato products! The 8 cycles worked. They set my immune system back a little and then i was able to start CellCept!

@pm56 Never mentioned IVig! Sorry

@becsbuddy no need to be sorry! IVIg can treat so many different things, so it never hurts to check when someone is running out of options! It doesn’t seem to be considered a first-line therapy, but maybe as an adjuvant - like in my case as second fiddle to the Rituxan, it might be helpful 😊

My husband may need Rituximab for Igg4-rd. What side effects have you noticed?

@carol52
Most frequently reported side effect is fatigue, particularly after 2nd infusion. It may last for a couple of days, or a couple of weeks, depending on the overall fitness. Some people refer to it as feeling "wiped out". May be better to stay home for 2-3 days after the infusion.