RITUXIMAB FOR SYSTEMIC SCLEROSIS?

[momo17]

Hi, My consultant has stated that cyclophosphamide is the only treatment left available to me as I'm on highest dose of mycophenolate and it has kinda done all it can. My illness is relatively stable with my lung decline only minimal now but have terribly curled hands which have me struggling with everything. I've read reports about rituximab being a much safer alternative but even altho I've read reports of people with scleroderma benefitting from it, he is stating there is no evidence to support this. Is there anyone in the UK receiving this treatment on the nhs or privately? I'd be really keen to try it but it would seem as I live in Scotland it's a no!

[MissusTee]

Is it worth paying to go privately? I know that it's a long way to London, but I paid for a couple of appointments with Professor Denton's team. It soon got the ball rolling with me, although not for your particular medication.

[momo17 in reply to MissusTee]

Hi, thanks so much for your reply. I’ve never heard of Professor Denton. I’ll look him up. I’d gladly come to London or pay privately if I thought there could be any benefit in the long run. Appreciate the advice.

[MissusTee in reply to momo17]

He's based at the Royal Free Hospital. It got the ball rolling for my issues.

[momo17 in reply to MissusTee]

Thank you. I will definitely check it out.

[DT1234 in reply to momo17]

Hi there are two Scleroderma support groups on Facebook that might interest you. One is specifically for Scotland but the UK one has a lot of members treated by Prof Denton

[momo17 in reply to DT1234]

Hi, thanks so much for info. Altho I’ve had Dcss for years now I’ve stupidly been on the inspire website which is mostly American! Wasn’t aware there was so much going on in the uk. Thank u

[Geordie_Kate]

Hi. I’ve been on cyclo for 10 years now. Started as monthly & reduced in dose and frequency to every 20 weeks now. Like you, I’m now stable so it’s to maintain it. I find it much better than myco. I couldn’t tolerate it as I felt permanently drugged. The cyclo is administered with methylprednisoline which may help with your hands too. Hope this helps you. Katy

[momo17 in reply to Geordie_Kate]

That’s really interesting and helpful, thank you. Been so scared to try the cyclophosphamide due to all the documented side effects. I’ve never actually spoken to someone who’s been on it so it’s great to hear of your success in your illness being stable. Long may that continue. Thank u

[Blueline]

Yes, I have scleroderma and Dr. Denton told me rituximab could be an option. I am doing IVIG and have been doing it for 5 years.

I would recommend you see Dr. Denton and see what he recommends. I wouldn't do cyclophosphamide unless he recommends it

[momo17 in reply to Blueline]

Oh that is great to hear. Thank you so much for your reply. I hope your condition has stabilised. Many thanks.

[momo17 in reply to momo17]

Incidentally blueline I hope you don’t mind me asking but do you have any underlying illness such as inflammatory arthritis or lupus too? My consultant stated if I had scleroderma along with those it could be an option. I’ve just checked where he has written to for further advice n It looks like it is where dr Denton is at so fingers crossed. Thank u

[Blueline in reply to momo17]

No I don't. I "only" have diffuse scleroderma 😄

[momo17 in reply to Blueline]

Me too. Thank you. That’s really helpful.

[momo17]

Sorry just seen the “ on only!! Yes as it that weren’t enough!

[missgreat_19]

HelloI am also getting treatment under Dr Denton. I took my first dose of Rituximab yesterday for Scleroderma and underlying Inflammatory Arthritis. Today I feel like zombie, very lethargy, muscle twitching, sudden hand numbness or disarray of eye bowl. These symptoms come and go off.

Any advice?

[momo17 in reply to missgreat_19]

Sorry to hear you’re feeling poorly. I never got prescribed rituximab. Hopefully these side effects will all pass quickly for you. Take care

[missgreat_19]

Thanks

[Lo1234]

Hi. I was on cyclophosphamide infusion with steroids but the dose of this medication has been already completed so now I have been recently prescribed mycophenolate.. I found it cause intestinal bowl issues as well as nausea vomiting also increase the risk of skin cancer. Could you tell me about some benefits as well as sides effect you have experienced from the mycophenolate?

[momo17 in reply to Lo1234]

I thankfully had no side effects. Maybe low blood count once or twice but in 6/7 years that’s really nothing. By the second test it was fine. I didn’t feel it helped me at all as still crippled with pain all these years on n hands still curled n facial/mouth issues but the consultants convinced it’s the best for me as my lungs have stabilised. I wish I could be more positive but I sometimes wonder if it’s done all it can for me n I’m taking it for nothing. Problem is there’s such limited medication for scleroderma, I would imagine this is why you’ve been offered it. Best not to think of worst case scenario with all these medications as none of them are great. I have heard cyclophosphamide is quite aggressive treatment so probably if you were ok with it, you may well be with mycophenolate. Good luck