Posted 19 May 2008 - 04:10 AM
I have not been diagnosed with Scleroderma, but the rheumatologist thinks that I do, even though the ANA came back negative. I have really bad raynaud's and the rheumatologist put me on 30mg Procardia xl for it. I have been taking it for two weeks now. My hands and feet are not as purple, but still get dead looking and cold. When they are not that way, they are bright red, hot and swollen. they also hurt more. At least when they are purple they are numb. Flip flops make my feet hurt less, but not good with the raynaud's. Closed shoes make my feet go numb. I am sitting at work with fuzzy slippers on. LOL I go to an exercise class 3x a week. I could be sweating and my hands are purple & cold. People always make comments about them. My feet also stay numb for the first 30min of class , which makes balance hard. Has anyone had luck with Procardia xl, and how long did it take?
Posted 19 May 2008 - 05:15 AM
There are many other drugs that have been used with success by members of this forum (nitro cream, Revatio (Viagra), Cialis, and others. You might want to search elsewhere on this sight. Drugs that work for some don't always work for others.
Doctors can be very uninformed about this disease. You might want to see a scleroderma specialist. Otherwise you may be like so many of us who have spent years wandering in the wilderness, without a decent diagnosis or treatment, whether it is scleroderma or some other cause. There are many other blood tests for these diseases. Most doctors don't get much beyond the ANA test. More effective are tests that check for specific autoantibodies for certain autoimmiune diseases (note: autoimmune diseases are caused by your body making antibodies that go after it's own tissue, and these can be detected).
Posted 19 May 2008 - 05:58 AM
Posted 19 May 2008 - 07:31 AM
Thank you for your response. About 7 years ago after I was dxed with raynalds the doctor put me on niacin, but it made my already low blood pressure too low. I have not taken anything since then. Over the past 7 years doctors would just say wow, look how purple your hands & feet are. (duh) I just got used to hiding my hands and feet because basically they stay in permanent raynalds attacks or swollen & red.
I know firsthand about being your own advocate. I finally was dxed in 07 with IC after years of pain and surgeries. I had a hysterectomy at 24 for pelvic pain. I can say it did help for a couple years. Then about 30, my pelvic came back. I had to stop running and exercising which I love to do. Doctors keep telling it was now my ovaries that were causing the pain. Finally in july 2006, I had my ovaries out and my gallbladder at the same time because the gallbladder just stopped working. My doctor was like you will be better now. My ovaries were wrapped around in a lot of scar tissue. Needless to say I never felt better and still had pelvic pain. After arguing with the doctor he finally did an ultrasound and found a mass where my ovaries use to be. He was all excited because now he had a source of the pain. In Dec. 06 they took the mass out, and said I would feel better. Never felt better. He started treated me like I was crazy. Oh you just have a "yeast infection"! Finally in Jan, I begged to go to uro and they did an hydro and said my bladder size had decreased and it was getting hard. I was dxed with severe IC. I also have fibro, IBS.
The hardest part about getting into other doctors is that my primary doctor has to refer me. He blows a lot of my symptoms off and says it is probably just the Fibro. My rheumatologist told me to get him to do a stress test because I have a lot chest pain. Sometimes it evens wakes me up from sleep. I have been to him 3 times in the last 6 months about it. He gave me nabumetone the second time I went to him about my chest. Monday, I went to him and told him what the rheumatologist had said about maybe having scleroderma and to check my heart, his comment was : you probably do because you always have weird things happen. Then he listens to my heart and said it sounds fine! I left so frustrated, I cried all the way home. I tell him about the pain I have under my ribs that drives me crazy. Most of the time it is on the right side, but it does go to the left side. Dull ache most of the time, and sometimes sharp. He just ignores that. Sometimes he makes me feel crazy when I leave his office.
My rheumatologist is a 1.5 hours away. The only one my insurance will take. I have another appointment with him on the 4th of June. I will talk to him again about my chest and side pain.
Sorry to rant so much, but it is just frustrating!
Posted 19 May 2008 - 08:51 AM
One other thing that I would recommend is that you keep track of your "ESR" (Erythrocyte Sedimentation Rate, or "Sed Rate"). It is an inexpensive, common test for inflammation. It is non-specific, which means that it detects inflammation from any source (the flu, cancer, arthritis) normal is around 10 - 15. Higher means that there is inflammation going on. If there is no other obvious reason for inflammation, and the number is high, then there is something going on. I'm not a doctor, but I think that this value tends to be normal with fibromyalgia (one of the hallamarks of fibro being normal tests).
So if your pelvis hurts, and your ESR is elevated it might be some sort of inflammation process. I have frequent problems with myalgia (inflamed muscles) form sclero. My sed rate is sure to be high when this occurs.
The diagnosis problem is almost universal to those of us with these problems. Far too many doctors blow you off if your symptoms aren't easy for them to figure out. Before I finally got a diagnosis of pulmonary hypertension, my doctor insisted I was "out of shape", even though I was at ideal weight, swam vigorously 4 or 5 nights a week, went on 20 mile bike rides, worked at a job where I walked a few miles a day over vigorous terrain, and spent spare time gardening! I guess he just assumed I was a liar...
Good luck taking charge of what doctors can't be trusted with...
Posted 20 May 2008 - 02:14 AM
Once again thank you for your replies. I do lots of research on symptoms but I like to ask people about their experiences. I just read the book Voices of Scleroderma 3rd edition. If you don't mind, I have another question.
With Fibro you have more muscle pain then joint. My joints have been hurting worse. I crack when I walk. My boys can hear me coming before they see me! :rolleyes: yesterday, after work I was in the store and my ankle started hurting really bad. It got to where I come not walk on it. It has done this before when I first get up from a sitting position, but not when I was walking. (same with knees). It did not go away for 10 min. I had to hold on to a cart just to get to my car. It was really scary and frustrating. I sat in my car and finally it went away. I was fine later that day and went to my exercise class. Had a few pains but nothing like the excruciating ankle pain. Have you ever experienced anything like that?
Posted 20 May 2008 - 10:54 AM
I've had a few specific joint problems (replaced right hip due to avascular necrosis, chondromalacia in right knee), but nothing like you describe. Have you been checked out by an orthopedic surgeon?
Posted 22 May 2008 - 07:27 AM