Scleroderma & Raynaud's UK (SRUK)
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i have raynauds and diffuse systemic scleroderma i have tried chemo for 9 months and mycophenolate for 9 months only to be told that its getting worse so i have now started a clinical trial weekly injections of toxcillizumab or placebo it is 50 50 as to wether i am on tcz or placebo just want to know if anyone else is on this trial and how they are doing

10 Replies

:o damn chemo therapy for raynauds? You make me feel like I don't have Raynaud's at all!

To be honest I hope you're part of the control group (which means a placebo) but I haven't heard of anyone on this trial yet, you might well be the first. Keep us updated in a blog maybe :)


Ravenshade: Lindylou has scleroderma + secondary raynauds, not primary. There's a difference. The chemo is to attempt to halt progression (of scleroderma).

Let us know how it goes Lindylou. DMARDs have all failed for me. I wish I could take part in a trial. Best wishes



Best of luck with your treatment......I hope everything turns out well and you start to feel a lot better soon x take care x


I have scleroderma and secondary Raynauds, i am having difficulties with my lungs and is due to start cyclophosphamide Therapy (chemo therapy) for 6 months moving on to Mycophenolate, disappointed to hear it did not work for you. Hope you get on the trial, good luck and keep us updated.


i had my 4th dose of cyclophosphamide yesterday so far nothing but am told it could take all 6 scheduled doses or more.I was offered the trial but declined as i felt so poorly at the time and didnt want to risk a placebo.I have no internal organ involvement so far, Have you ?


hi lolipop

like you i started off with cyclophosphamide for 6 months then it went on to 9 months but i had it in tablet form as they could not get a canular in due to my skin being so thick and hard,i then went on to mycophenolate for 9 months and my condition got worse very quickly , they wanted me to go back on to cyclophosphamide but i didnt want to as it made me so ill , does it make you ill ? so my only other option was this clinical trial i had to give it a go. no i dont have any internal involvement at this time and hope it stays that way.

i am keeping my fingers crossed that i am on toxillizumab and not placebo and that i improve. is your mobility affected ? mine is quite bad and have trouble getting around, i have become a prisoner in my home.


hi lindylou i had methotrexate at first for about eight weeks which made me ill then they changed it to mycophenolate but i wasnt on it long when they changed me to cyclophophamide . i have it iv bit took 13 attempts to cannulate so went to theatre and had a hickman line inserted. i am ill after each infusion (just recovering from fourth dose friday) but i find if i take ondansatron for sickness as soon as the iv is put up and the day after i am not too bad now

My mobility was affected but that improved (hope it stays that way) not due to infusion as it improved on its own .So far i havent seen any imrovemnt in my skin, i find it difficult to do lots of things for myself open jars, cans, packets, lift things out the oven. was and dry my hair do up buttons cut up food etc


i also have ulcers on my fingers


Hi everyone !

Back in 1997, after some time of being tried on tacrolimus, hydroxychloroquine, and then neoral, with no success of dampening down the aggressive onset of my diffuse systemic sclerosis diagnosis, I was then given a few blasts of iv cyclophosphamide which I agree with llindylou, the side effects are horrendous, especially the nausea, as well as the pain in being canularised due to the thick skin.

I then took 2g of mycophenolate for 4 years which thank goodness stabalised the symptoms. I now take no medication for my scleroderma, keeping it in check with my daily skincare routine as well as drinking superjuices for vitamins, but unfortunately my raynauds has got worse so I am on a heavy duty vasodilator, which so far has given me my first ulcer free winter I have had for over a decade ! Happy days ! Although, this winter has made me have to have a tooth removed due to not enough blood supply to fight a soft tissue infection around a root :(

The next challenge for me to conquer is the constant musculoskeltal pain as well as improve my physical stamina, as during the winter months I have to stay in to avoid getting cold. Llindylou - i used to feel like I was a prisoner in my home, but I have now tried to look at it from a different perspective in that, how lucky I am that I no longer have to sit in rush hour traffic, and I try to distract myself with different projects which are home based, and given we now live in an age where the internet is the gateway to everything, I feel as though I have the world in my lounge haha ! even though I am dressed like a sumo wrestler eskimo !

I also try and focus on the things that make me feel good, and my mantra for 2013 is 'if it makes me feel good, I am doing it, if not, I am not'.... I am on year 16 of the journey and reach 40 in June with a less hectic social life than my 90 year old nan, but each day I know by feeling good, I am getting better :) I hope my coping mechanisms help you also .......


hi just wondered how you were getting on on the trial. i have been asked to do a drugs trial which runs alongside current treatment


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