Does anyone recognise this pattern?

I am a fit 56 year old man who was diagnosed with SSc about 15 months ago but didn't really know what that meant having never been ill! Since then I have been on several cocktails of drugs including mycophenolate, hydroxychloroquine, prednisone, nifedipine, lorsartan and recently naproxen, gabapentin and montelukast.

Despite the help of some fantastic people the disease marches on at an alarming rate. My skin is so tight that both my breathing and personal hygiene are compromised. Worse are my fingers, hands and arms which are covered in sores and ulcers. At time of writing I am in the wonderful Royal Free hospital having a course of Iloprost infusions which we are hoping will help the ulcers.

I am due to start a clinical trial for a new drug next week but don't really know whether to go down that route or not?

Does anyone else recognise this story? How long before I get some remission? I'm desperate to get back running or at least to be able to play golf!

3 Replies

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  • Jacksons_dad hi there,

    You'll probably never go into remission as it's just not how this disease works for the majority of us.

    I'm into year 7 since diagnosis and I'm still in shed loads of pain, with new symptoms appearing.

    The best you can hope for is to learn to live within your new limitations rather than lusting after a life of old.

    I do hope things level out a bit for you soon though, as although you're unlikely to hit remission a levelling out of sorts can and does happen, whereby symptoms don't get much worse.

    Try and stay mentally positive though.

    Charlie.

  • I hope that you are not having all these drugs at the same time (joke). Our disease happens in a cyclical way, It comes and goes to come back again. If you have never been ill before you will find it very difficult to have a chronic disease. You will get used to it in time and find some solutions and habits that suit yourself. Be kind to yourself, distract yourself to take your mind off it as much as possible, cultivate your sense of humour and don't get angry it is no-one's fault. Best of luck.

  • Thanks zenabb I know I will have to learn to adjust and luckily we humans can learn to cope with almost anything that's thrown at us. I have heard that after a while my very tight skin should soften somewhat and I am hoping that will allow me to do some of the things that I used to do. Is that so or am I clutching at straws?

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