I have had a few problems this year and have had my mycophenolate increased to 3 X 2 a day. My consultant says it may take up to 6 Months to feel an improvement and if not then we can try cyclophosphamide treatment. Has anyone had any experience of this? I have systemic scleroderma and lung fibrosis and will try anything to feel better and back on track! Feeling so fed up at the moment. X

9 Replies

  • Hi Jennifer1950

    I guess we are the same age!

    It saved my life I have SS, Raynaunds etc and was put on lung transplant list, but my lungs were saved by Chemotherapy. I think I was lucky to have been treated this way first and then put on Mycophenolate to control my immune system. Still wonder why more sufferers have to go through too many symptoms before being considered for treatment.

    Not really looking forward to the coming Winter, but I've just enjoyed my best Summer, healthwise in about 5/6 years.

    I think you'll still feel fed up for a long while as Chemo has internal side effects to manage, but I'll always be grateful that my Specialist decided to attack rather than wait for me to deteriorate.

    Keep optimistic and keep warm!

  • Thanks for replying. I guess the name gives it away a bit😱 It's good to hear you had a positive result, feel there's a bit of hope now. Seeing the consultant in December so should know either way then. I too am dreading the winter, it was last winter that knocked me back so much, but got to keep going. 🤗🙏🏻

  • I have just finished 6 months of Cyclophosphamide infusions to try to slow down fibrosis in my lungs.Will know soon if it has made a difference - as I had my CT scan last week. Great benefit for me was some loosening of my skin. I have diffuse SSC and my Rheumatologist wanted to treat the disease aggressively.

  • Thanks for your reply. Hope all is positive with the CT. I'm hopeful I will get some improvement soon. It's good to hear from others in the same boat xx

  • I also have similar symptoms, fibrosis, I had 12 monthly infusions of Cyclophosphamide in 2013 & have since been taking 1,000 mg Mycophenolate every day since. I have seen a respiratory consultant & rheumatology consultant together this week & they were very pleased with all recent test results, there doesn't seem to have been any further deterioration & I came away feeling quite positive. Hope you improve soon.

  • Thank you so much. All so positive replies. Feeling much more optimistic x

  • My situation is very similar to yours with lung and gut problems. Ihad six cyclophosphamide within four months of diagnosis now on mycophenolate to maintain the improvement from cyclo( improved lung function etc )skin tightness not as bad as before. So very glad I went that route cos have to say the thought of such powerful drugs scared me! See my consultant tomorrow lung function tests next week fingers crossed! Can only say positive things about this treatment for me, hope you get benefit if you go that route cos zometimes this illness can seem very scary chin up all the best to you!

  • Thanks for your reply. I think it's going to be better for me to go that route too. Mycophenolate doesn't seem to have improved the situation yet, but I live in hope that I will feel better soon x

  • I was diagnosed about 15 months ago with diffuse cutaneous SS and have been deteriorating quite fast. Hands, wrists, arms, neck, face, chest and now down my legs into my feet. I have several painful and unsightly ulcers too. I've had steroids, hydroxychloroquine, nifedipine, merkulast, mycophenolate, sildenafil and a few other drugs but nothing has halted the viscous tightening of my skin.

    Five weeks ago I had Iloprost infusions followed a week later with cyclophosphamide. I think the Iloprost is beginning to work now as I am generally a much better colour and my ulcers are improving. My big hope is that the cyclophosphamide starts to soften my skin. That for me is the worst part of this awful disease and to hear from a couple of these replies that it has done that for you is really encouraging.

    Thank you

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