pieplate1
06-29-2008, 01:13 AM
anyone out there with this, can you please respond on how you are doing, and what treatment you are on. pieplate1
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gdiluca
06-30-2008, 02:48 PM
I only have CREST and have not progressed very far. I am currently taking methotrexate and Plaquenil. I gotta say that they have helped me in that I'm not so dreadfully tired all the time. I also take nifedipine for my Raynaud's. That too has helped in that i don't have such severe attacks any more. Each patient is different with different progressions.
pieplate1
07-01-2008, 12:30 AM
hi, what symptoms did you start with, how old are you?? Could you please give me a rundown of your symptoms, and would love to hear details, as there is not very many people around me with these symptoms. I am 60 and had treatment for breast cancer two years ago. Waiting to hear. pieplate1
gdiluca
07-01-2008, 03:02 PM
My sypmtoms started with very swollen hands and fingers with extreme fatigue, although i've had Raynaud's and GERD much longer. Then I got non-stop hives and sun sensitivity. I've got spots too. I had blood work done that came back ANA positive with the centromere pattern. I still have a high sed rate as well as a high CRP. I am 48 and have been going to the rheumatologist now for a couple of years. Flares come and go, with dry eyes, mouth and such being the biggest nuisance. My parotids swell up sometimes so that i look like i have the mumps. I can break out in a lace like rash called livedo reticularis which can look kind of funky. No dreadfully big deal to me as long as i don't get overtired. Fatigue is the enemy! Each person is different and i only have the CREST version, but all things considered, i can't really complain. What type of scleroderma do you have?
pieplate1
07-02-2008, 12:56 AM
My sypmtoms started with very swollen hands and fingers with extreme fatigue, although i've had Raynaud's and GERD much longer. Then I got non-stop hives and sun sensitivity. I've got spots too. I had blood work done that came back ANA positive with the centromere pattern. I still have a high sed rate as well as a high CRP. I am 48 and have been going to the rheumatologist now for a couple of years. Flares come and go, with dry eyes, mouth and such being the biggest nuisance. My parotids swell up sometimes so that i look like i have the mumps. I can break out in a lace like rash called livedo reticularis which can look kind of funky. No dreadfully big deal to me as long as i don't get overtired. Fatigue is the enemy! Each person is different and i only have the CREST version, but all things considered, i can't really complain. What type of scleroderma do you have?
pieplate1
07-02-2008, 01:04 AM
hi thanks for writing. So far all my blood tests have been negative, but I have the symptoms of hardened fingers, rhynauds-bad, mouth feels swollen, horribly dry mouth, skin changes on forearms, looks shiny and fluid like, leaves
indentions. bad muscle aches and pains that would travel around, and increasing fatigue. things are complicated as I had chemo and radiation two years ago. I saw a rheum last week, visited with me for an hour, and at end decided to treat symptoms with 5mg prednisone and switch me off beta blocker to norvasc slowly. So far so good, muscles are better, but hands are slow. I do not like the aspect of being on prednisone long term but will see. Did you see a derm, also for diagnosis.? thanks for sharing, good luck to you.
pieplate
indentions. bad muscle aches and pains that would travel around, and increasing fatigue. things are complicated as I had chemo and radiation two years ago. I saw a rheum last week, visited with me for an hour, and at end decided to treat symptoms with 5mg prednisone and switch me off beta blocker to norvasc slowly. So far so good, muscles are better, but hands are slow. I do not like the aspect of being on prednisone long term but will see. Did you see a derm, also for diagnosis.? thanks for sharing, good luck to you.
pieplate