Mycophenolate..HELP: Hello. My name... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Mycophenolate..HELP

12 years ago•5 Replies

Hello.

My name is Ashton, I am 21 and I have Systemic Sclerosis. At first, my Raynaud's affected me the most. I had at least 6-8 ulcers on my fingers at one time, all of the time! I was having Iloprot every 8 weeks, and struggling with daily life. Then, my lungs started to deteriorate. So last year they started me on Mycophenolate. Immediately, my lungs got even worse and so I had a course of Cyclophosphamide treatment which helped my lungs get back to how they were. More recently, I have been put back on Mycophenolate and the same thing has happened again... I am waiting for an urgent review at The Royal Brompton in London to find out what treatment they will use this time.

I am aware that there are only 3 options now... Mycophenolate, Cyclophosphamide and one other. Is this correct? And has anyone else found that Mycophenolate just made them worse? EG> Breathlessness, chest pains, bowel problems, rashes?

Thanks for reading!

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AshtonRains

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5 Replies

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VanessaJoanne12 years ago

Hi Ashton

Ask to be referred to Royal Free Hospital. It is the specialist centre forScleroderma.

AshtonRains in reply to VanessaJoanne12 years ago

I am already a patient at both the royal free and royal brompton.

VanessaJoanne12 years ago

That's good. They are a great team and I hope you get a good treatment plan soon. I am sorry to hear that you have all this to deal with at this early time in your life. It's bad enough for us oldies.

socold12 years ago

I got diagnosed about 5 years ago with scleroderma. I could barely get from the couch to the bathroom because I would get so out of breath. My doctor At UCSF put me on mycophenolate to help my lungs and it did wonders for me. I don't know when I would have without it. It makes many nauseous so I tried Imuran but it made me extremely sickso I want back to mycophenylate. I'm sorry to hear its now working for you. Good luck in the future.

socold12 years ago