mowingqueen1

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Everything posted by mowingqueen1

  1. I did the photopheresis for three months. I have deep morphea but it is different than most. I have this from my back down both legs. This is a long and very expensive treatment. Side effects were that I was very tired they day of the treatment and they had a hard time keeping my blood pressure up during the treatment. It did not help me at all. There was no sign of any change at all. If your insurance will pay I would still go because everyone reacts different to treatments and meds. Good luck and keep us posted.
  2. Oh the pain. I have lots of tight skin issues in my lower back to the back of my knee. My skin in my hip and thigh feels like I'm touching a bone under the skin (very tight). I have been on med after med for pain and to help control the spreading and nothing has worked. A few months ago I went back to my doctor and told her that I had enough. I was ready to give up. She sent me to a pain management clinic. I have no pain!!!!!! I had a nerve block procedure. It last for about 2 months for me. Everyone is different. This may not work forever but for right now it is working for me and I'm out of the bed. I would ask. I laughed when she told me to go there because I really did not think anyone could help me. It is still spreading BUT now I have relief from the pain. Good Luck.
  3. I was only in there for 10 seconds and got toasted very well. I did this for at least 6 months every other day increasing my time every other visit. Traveling was not fun but I was willing to try anything. The only thing I got out of that was a great tan, however now I have moles starting to pop up and they are watching me because of skin cancer. To be honest a tanning bed did just as well. I have noticed that every time I go to the beach and stay out in the sun that my morphea does seem to be a little better. It only last for a few days and I'm right back where I started. My morphea is very deep so it is being very hard to treat. Maybe it will help your area. Good luck.
  4. Sorry it has took so long to get back with you. I do not have lung involvement. The only thing I have is skin tissue involvement. I may have more going on but they can't decide what. The harding of the skin is very deep (very deep). It is spreading more each visit I have with the doctors (every 3 months). It is now from my lower back to the back of my knee. Now it has decided to go to the other side of my body. They keep changing my meds because I am having lots of pain at times and my walking is getting worse. They think that enbrel may help with some of the pain. I'm not seeing any difference yet. I just met someone else that has rheumatoid arthritis that is also taking enbrel. She has had major improvement. She said it makes a difference if she is able to get up in the mornings. She also was told this is a long term committment. I am have mild headaches on and off. She also had headaches but she said they went away after about a month.
  5. I also just started taking enbrel 2 wks ago. My first rheumatologist said it would not benefit me however my new doctor thinks different. I have deep skin involvement that has crossed two joints. So far my pain has not changed at all however doctor said it may take a little longer to know if it will work or not. I'll let you know if I see a difference in pain.
  6. I have morphea also from my lower back to my knee. Mine is very deep and has crossed two joints. I was not diag with morphea until about 5 years ago, however my skin started changing about 20 years ago. I have been on several meds in the last few years and I can tell you that everyone's body is different. Just because the meds did not work for me it might work for you. Some of the meds I tried were Dynacin, Dovonex, and Captopril. I also did the PUVA for 6 months 3 times a week. I did the injections every 4 weeks for 2 years. Keep in mind that I do have pain because of crossing joint and extremely deep harding skin. At this time I am taking Decadron. I just started this month. We won't know if it works until about 2-3 more months. The best thing I have found for myself is this message board. I read it often and on my doctor appts we talk about everything others are trying to see if it is for me.
  7. Has anyone every had dexamethasone before. I have morphea (severe case) on my right waist to knee area. I have been tossed back and forth between doctors because no one knows what to do. My new dermatologist wants to talk with me about taking this steroid 3 days a month. Any info on your experiences sure would make it easier for me to make my decision on what to do.
  8. I was able to register in just a few minutes. Your instructions were GREAT!