Rituximab- So Far

[Lupiknits]

I had my first Rituximab at the beginning of July, the second a couple of weeks later and a couple of Iloprosts since then.

I did not enjoy the infusions or the after effects but they aren’t meant to be fun! I have my follow up in the middle of next month.

Progress so far? Despite my feet an ankles still looking horrible, I don’t care. I can flex them, I don’t have to use brute force to wash between my toes and I’m able to get around a bit more. Give it a week and I might shock the neighbours by walking past. I don’t know yet if I’m going to be able to wear shoes or socks, but walking will do! I still have neuropathic pain but can cope.

As far as anything else, I don’t notice any difference: feet and legs were the most disabling part of the condition. I feel like I’ve been wearing pots for broken ankles for two years and now they’ve been taken off. I need to work on muscle strength now.

Still a way to go but I’m very optimistic. I hope others have this kind of experience.

[OldTed60]

What an uplifting post this is for me to read a week prior to my first Rituximab infusion LK. I don’t have DM but I strongly suspect I have PM (polymyositis) as my scleroderma antibody points to this. Since Covid 6 weeks ago my thigh muscles and area of my right side back just under my bottom ribs is really bothersome. I haven’t mentioned this to my rheumatologist but I think she would just assume flare of PM/ SSc as I do. When I was formerly misdiagnosed with RA for 5 years one of my main symptoms was not being able to navigate stairs or get up from sitting position due to weakness and locking in my thigh muscles. So with hindsight, given I was only seeing a very arthritis-focussed, old school rheumatologist back then, I suspect myositis was not even considered. My CK was negative when last tested 3 years ago but I was less affected by MSk issues at the time - it was all gut and skin related (allergies and some weird micro vascular skin disease) horrors. So the fact that Covid seems to have re-triggered this weakness and struggle climbing stairs (breathlessness and muscle fatigue) makes me feel more focussed on trying Rituximab than I was previously. And your own experience of starting to lose the clay pot feet and legs is terribly cheering. So thanks and hugs from me - hopefully others here too will take heart from this post X

[Lupiknits in reply to OldTed60]

Thank you OT. I hope to hear good news from you too! x

edited to add

One of the eek moments the day after each Rituximab was finding I had two bright red swollen circles, one on each cheek (hard to describe but almost like clown make up). Should this happen to you, use ice . Your pal found that helped x

[OldTed60 in reply to Lupiknits]

Thanks for the warning. Coincidentally the woman opposite me on infusion ward now is getting Rituximab. I have met her in here before and recall she has RA and is under my Rheumy too. She seems okay on it but will ask when I’m finished wearing my shades and cat napping as iloprost does its thing. X

[Lupiknits in reply to OldTed60]

When I had my first Rituximab infusion there were three others having the same. They breezed through it. Everyone clearly reacts differently. I dozed through both and felt like lead the next few days. It was just the red circles that took me aback. x

[OldTed60 in reply to Lupiknits]

Thanks for giving your own account of how Rituximab was for you. The woman opposite me today was getting the second of her fourth round of Rituximab for RA. She gets it annually and it keeps her RA very well controlled. She was an amazing woman - aged 80 something - had been an astro physicist from the US. She cares for her husband, who had a stroke, 24/7 and also does Pilates, swimming and badminton in her small town nearby. She had only heard of RA and Lupus out of this rheumatological family and hadn’t had any side effects at all from Rituximab but had severe peripheral neuropathy and been temporarily wheelchair bound for 3-6 months by the DMARD, Leflunomide. X

[Lupiknits in reply to OldTed60]

Really helpful to hear others experiences. For myself, I would have liked to have known more good experiences beforehand: it soothes the nerves. Others there when I had mine seemed not to be newbies but we all tend to smile and nod rather than converse much x

[OldTed60 in reply to Lupiknits]

Yes it’s really good to get your update for me as really cheering and gives me hope. I guess my unit is maybe smaller than yours although it’s a relatively large clinical investigations unit in a uni teaching hospital - but only a couple of wards for infusions with 4 recliners per ward. The rest is used for overnight stays and prep for investigations eg scopes. In winter it becomes mostly a holding bay for those with seasonal viruses eg flu and Covid and those still too unwell to be sent home. Just six infusion recliners crammed into one ward. So I’m lucky to get Rituximab before this shift occurs .. hopefully. I don’t usually speak or interrogate fellow patients but today, with her getting Rituximab, my curiosity got the better of me. My main observation was how attentive they are with hourly BP monitoring and other tests compared to how they are with iloprost. But nice nurses on today and they think they will be on a week today again so hopefully all will go well as possible 🤞🏻xx

[Lupiknits in reply to OldTed60]

My nurses are very attentive during Iloprost but I have to say that is ramped up for Rituximab, as it should be.

Otherwise, as you know, I seem to have won the postcode lottery for rheumatology 😉x

[Buttsy]

So glad to hear the Rituximab is helping and you can get about a bit.

A positive step forward.

[Jaq1971]

thanks for sharing it’s always hard to step into the unknown but I’m hopeful it will give me some quality of life xxxx

[Lupiknits in reply to Jaq1971]

For me, and so far, it’s worth it. I do agree about the step into the unknown though. I was very nervous x

[Clangerscat]

So pleased you have had such a positive outcome so far, long may it continue. Thank you for sharing this happy news.