hospital appointment

Hi everyone, I had a hospital appointment yesterday. It went as well as it could, I'm to have a ct scan cos I"e not had one for a couple of years, just to see how my lungs are, because my last 2 lung function tests show my lungs are smaller, than they were. I'm also starting a new medication for my raynauds, because I could not tolerate nifedipine, the new one is called amlodipine, has anyone else been prescribed this? I'm finding that the pain in my ankles knees and hips is getting more noticeable, and the skin on my hands and fingers tighter. This (systemic sclerosis ) is a very complex condition and never stops surprising me with ever more symptoms! It"s good that we all have this site and the scleroderma society site to talk with each other.

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  • I had very painful ankles and then very swollen ankles - so bad that I could hardly walk. I changed from Coracten (nifedipine) to amlodipine about two months ago. The swelling went away and the pain was much reduced. The drug is not as effective as Coracten - especially in this cold weather. So am using heated pads in my gloves and shoes when outside. But the reduction of pain is such a relief that its worth it.

  • What didn't you like about the niphedipene? Curious, I started back on mine

  • Hi 48, I"ve tried it 2 times now and on both occasions it gave me headaches, I already suffer with migraines so did not want to increase the headaches.

  • I have been taking Amlodipine for years. I have suffered from Migraine ever since the Sclero and Raynaud's started in 1966!! Nothing helped stop the Migraines until I started Amlodipine for the Raynaud's. After about 7 years (2003 - 2010) I suddenly noticed that I was not getting any Raynaud's attacks and that has continued until now. My fingers are back to normal, my terrible cuticles have cured themselves, no swollen fingers any more. Who Knows why?? Maybe it is just that I have had Systemic Sclerosis for so long that some things have burnt themselves out. No headaches is bliss. Can't say the same for the internal damage but something is better than nothing.

  • I have been on Sildenafil prescription for raynaud's syndrome, and I tolerate it well. Worth looking into with help of your consultant.

    Hope the CT scan results show things are stable.

    Yes, it's complex, and everyone's symptoms seem to be different!

    T

  • Have also systemic sclerosis and the pains in my joints is ridiculous. Can hardly stay upright most days. The raynauds is not as bad as it was because I try to keep warm as much as possible as I only take clopidogrel for blood thinning and nothing else at the moment as I have been having cyclophosphamide infusions at hospital for my lung damage to try to stem further damage. Only one more of these infusions to go now [and a lung function test afterwards at the end of the month] so what happens after this for what else ails me..joints etc. I have no idea.

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