Jump to content
Sclero Forums

Whitney

Members
  • Content Count

    9
  • Joined

  • Last visited

About Whitney

  • Rank
    Newbie
  1. Please let me know what happens with your treatment. I too have the spots on both breasts and are very itchy. I have become very creative on how to scratch and be discreet. LOL,LOL We should have a whole forum on, How To Scratch Discreetly, LOL. Has your doctor told you, Do not scratch, It only adds fuel to the fire., He is right I am sure, But for me I can't help it and I have gotten pretty good. How long have you been diagnosed with this? How has the Diffuse Sclero affected your body? Do you think it has caused the morphea to be worse? Whitney
  2. Hi Loy, I'm a newbie also, and am just trying to get answers. I am not sure if my mirrored spots are coincidence or not, but they are on both sides of my body. I think the tiredness comes from this because I never had it before like this. It doesn't feel the way you do when you have been very active and just gotten tired. The best I can discribe is the flipping of the switch. You say you are trying to get through to doctors? Are you on medication now? I hope you find something to help you soon. Whitney
  3. Hi Danielle, I remember when I first started going to the doctor for this, he told me to avoid stress if I could. So you maybe right about stress affecting this. I work in a stressful job and along with that the day to day stresses of every day life might just add to it. Do you think the different seasons form summer to winter, or hot to cold, and humid to dry seem to bother your Morphea to? It seems the humidity seems to make me itch more along with the heat. Whitney
  4. Thank You Sheryl, I am very greatful for the things I have been able to read from all of you. It does help me put a better picture to what I have. The tiredness sometimes hits every day and sometimes it doesn't. But I have never been a person to take a nap so it frustrated me, and felt so strange. Thank You Again. Diann
  5. Thank You Razz, I am on Celcept 500mg. 2x a day. I will keep that in mind. Maybe I can incourage my doctor to increase the dosage if this fails. Also do you find you pick up more colds, flu ect. now that you are on immune suppressents? And that they seem to take a little longer to get over? This is another thing I think can just be from getting older but has not happen to me till I started on this type of drug, so I am really not sure. Thanks, Whitney
  6. Thanks Nina, I appriceate your support. It is very kind of you to reply to me. I hope to hear form you in the future. ' Whitney
  7. Hi Razz, Thank you for the welcome. I am on Celcept and Hydrocortozone cream right now. My doctor thinks the celcept might work without a lot of side effects because it also suppresses the imume system. After two months I see no difference. I have to go back to see him this month. Every time I think no more spots will come out, Surprise! Some more pop up. They are growing in places I don't even like to think about. The crazy thing is, if one pops up on one side of my body it seems that most of the time another pops up in almost the same place on the other side. Maybe someone has heard of this. I am not sure if I should push my doctor to try something stronger. You are right life goes on and I try not to let this slow me down. Mostly it doesn't. I would like to ask you. When you get tired do you feel like someone flips a switch all of a sudden? Even if you get eight hours of sleep? I get enough sleep and I feel fine and then it will hit me. I am not sure if this goes along with Morphea. I didn't have this before I had this disease. I don't know what to blame on this or not really enough sleep. Thanks, Whitney
  8. Hi Danielle, It is nice to talk to some one who understands this. I started out on Plaquenil twice a day. No help. He also gave me a round of steroids and a shot . No help. I have a several different ointments. Also no help. I went to a specialist at UCLA Medical Center who recommended the treatment you are on but my doctor doesn't want to use that yet. He has me on celcept twice a day and hydrocortisone cream. The cream helps with the itching some. I did run into a lady at my work who had Scleroderma and she told me the best she had felt was when her doctor put her on Thalidamide. I didn't know they used that for anything anymore. My doctor isn't ready to try that yet. I have a million questions but I need to feel a little more at ease using this forum. This is the first time I have ever done this. Please let me know how your treatment works. Whitney
  9. Hi, I've seen this forum for months, just now got the courage to join. I was diagnosed with morphea 2 years ago but have not had any results from any treatments so far. I'm tired so much of the time, I ache, itch, my skin is sore especially at the waist band of my pants. I don't know if this is the disease or my age or just in my mind, or all of the above. I have big spots all over my back, chest, neck,tops of my legs. and smaller ones around my eyes. I just try to grin and bear it. Please give me input as I have never been able to talk to other people who have this.
×
×
  • Create New...