Scleromytosis Rituximab

[Aarts]

Hi all I had my appointment at royal free in London and they actually listened!! They have a high suspicion of myositis as well as scleroderma, they have recommended rituximab with reduced Mycophenelate. Anyone have any positive feedback about muscle aches/weakness, ILD and this medication combo. Always in need of hope x

[Tiggywoos]

I’m so so pleased your appointment went well .. you so deserved it and needed it to 😊.

Are you on lupus forum ? It’s much more active than this one and you will get plenty of response if you post this on the lupus forum .

Big hugs and have a nice evening xx

[Aarts in reply to Tiggywoos]

I am not as not got lupus but if you think it's relevant then I'll give it a go x thanks for the hug 🫂 xx

[Tiggywoos in reply to Aarts]

You don’t need to have Lupus and there’s lots of cross over on that forum . Defo do post .. they’re a lovely bunch and super knowledgeable 🤓🤓xx

[Hidden in reply to Aarts]

Lupus is a different AI so… I have overlapping but not lupus. So keep posting here please as Sclero is much rarer but we all need people who know what Scleroderma is like and can understand about the highs and lows and have experienced the treatments .

Sorry they thinking u have Myositis now too. I’m interested as lots of leg pain just now and feel weak - antibody points to Myositis as extra but when checked my CK has been normal. Rituximab has a very good track record of effectiveness and good you can attend the RFH. It’s too far away from me so will never get the SSc specialist as my rheumo is a lupus specialist - very good though but most of my problems with pain are blamed on chronic pain and high inflammation or vascular stuff. Have to learn a lot from others here so can ask my rheumo the right questions cos only knows about Lupus.

[Aarts in reply to Hidden]

Hi the RF stated to me that with overlap the CK levels can sometimes be within normal range, mine only went up to 207 then back down to 47 and they still think it's myositis. They've said that symptoms and also anti-body profile is the biggest telling signs. The RF will direct your care via your local rheumatology. (See it as a headmaster finally making them listen). So even if you could get a referral and be seen then it's once every 6 months and then yearly then less once it's under control x

[Hidden in reply to Aarts]

Think it’d be hard to get referred for me as I’m highland Scotland but I’m antibody specific for Scleroderma with severe gut involve so maybe sine plus sjogrens and urticarial Vasculitis. On 3grams Cellcept seems to help lots with sjogrens but still always struggling with managing bowels and severe gastroparesis. I like my rheumo though and they get me Iloprost so can’t complain - maybe not Myositis full blown I asked about Rituximab but registrar said Mycophenolate is better for lung involvement which I have in early stage fibrosis - thought to be sjogrens though. I’d love to go to RF as headmaster but would have to be private as have asked and I know it’s v dear.

[Fennella02 in reply to Hidden]

A Somerset friend of mine went to Dr Beynon at the RF, privately for the first appointment but is now seeing him NHS and awaiting the start of Humira via him. She has no antibodies and no real diagnosis but lots of symptoms.

Sorry to jump in, I’m an infrequent visitor these days but the title of the post caught my attention x

[Aarts in reply to Fennella02]

Yes it's very true as actually the private sector can't treat scleroderma as well as the nhs can due to it being a specialism thorough passion rather than the old green stuff x

[Hidden in reply to Fennella02]

No not jumping in as that’s sure to be helpful for English Scleroderma patients would think. But devolved regions don’t work like that although got an England consultant I see privately once a year who contacts RF Scleroderma Prof about me and writes to my nhs rheumo here in n.scot. The Prof would see me privately but can’t afford nor well enough to pay or trek that far.

[Aarts in reply to Hidden]

Could you contact the royal free and ask about the rules as surely you should be entitled to some advice and also if it's too far/costly then maybe they could arrange an appointment via zoom calls. Could even see if jointly your rheumatologist yourself and a RF could shedule a meeting of this nature? You never know if you don't ask..... All the numbers are online if you search RF Scleroderma Team. I hope that in the midst of this you feel like your getting the help you need. Also in terms of myositis you can ask them for an MRI to look for inflammation (I'd go with the body part that feels the weakest) and from this they can apply for funding for rituximab.

[Hidden in reply to Aarts]

Thank-you so much. I’m under neurology for my neck and they look for Myositis I think. But the feel is that my pain is part Raynaud’s part neuropathy as seems improve after Iloprost. Will see if things worsen more then will ask my rheumo again re RF as they have been very good at testing me EMG and keep open mind cos of scleroderma antibody 😊

[CLSH]

Hi. I too have scleroderma and myositis. Scleroderma was diagnosed first and I was prescribed mychophenolate but this was quickly escalated to cyclophosphamide infusions as my health worsened.

After six months of cyclophosphamide infusions I was in a really bad place, breathing was difficult, I was put on a puréed diet because I couldn’t swallow or speak properly and I was very weak, couldn’t lift up my arms to brush hair etc…

It was then, six months ago, that I had my first rituximab infusion. It took a while, I’d say three months, but I did see real improvement with my speech, swallowing and muscle strength. By Christmas my ck levels were normal. I’ve just had my next infusion (you receive them every six months) and I’m hoping for further improvement. I still take mychophenolate.

All in all the treatment has worked for me.

Hope it also works for you. Good luck!

[Aarts in reply to CLSH]

Thank you and I'm so so glad that it has improved for you, this makes me so happy as the stress from what you've been through is so difficult and not understood by many! I wish you continued improvement and inner peace 🫂

[Redwine53]

So glad you were listened to. I am at the Whittington hospital and have been thinking should I transfer to the RF. Are you happy with them? I was diagnosed over two years ago with scelerderma, myositis and lupus so I am on mycophenolate, hydroxychloquine and 5mg prednisolone. I have aches and pains that seem to move around my body but don’t know what condition is causing what! Take care.

[Aarts in reply to Redwine53]

Definitely refer to RF, they have access to so much more - nurse line especially for scleroderma, joint care at specialist hospitals so expert MDT meetings, up to date information on disease profiles and best suited treatment for each profile. Even plastic surgery referals etc. I've spent the last 10 years being misdiagnosed and one appointment with RF they have understood all my bloods and best treatment accordingly x

[Redwine53]

Thanks Aarts that’s really helpful. Would my lupus and myositis diagnosis as well as scelerderma be ok do you think?

[Aarts]

Yes it'll be classed as mixed connective tissues disease and I'd imagine they will identify the best treatment encompassing all, hopefully with a more linear and clearer treatment plan. Sometimes the less drugs the better if it can be done x

[sleepytink]

hi, pleased to hear you actually got to see someone who heard you, can I ask who you saw as I need to go back to the RFH and might see if I can see someone new?

[Aarts]

Dr Alice Cole x