Morphea?

[BJK7493@aol.com]

Hi all, I went to the Dermatology clinic at the Univeristy of Iowa this past Tuesday for a consult due to the extensive hard masses that are forming mostly on my trunk area. I had a previous biopsy done back around Christmas time and they said they thought it was Morphea? When I questioned the U of I docs about it they said it looked like a form of Morphea but they did not know why they keep forming after being on the IVIG for the past 6 months. Does anyone have a clear understanding of what Morphea is and how to stop it? I feel like my dx of Dermatomyositis was enough last year. I don’t want to have to deal with 2 autoimmune disorders. They also said they rarely the Morphea tumors out but now it has gotten so big it is bothering me when I walk. Does anyone else have these nice little masses? Julie

[BJK7493@aol.com]

Hi John, thanks for your response. I have been on minocyclline for almost a year now for the dermatomyositis . I to could not tolerate it twice a day so had to back down to once a day. I never had these masses until I had to back down to once a day. I take it with all my other medications at night and am wondering if something else I am taking is not letting the mino work. It’s weird because the rheumatologist seems to have my dermatomyositis under control but now this has flared up. How old is your daughter? I am 47 yrs old. Where does your daughter have the masses? Mine seem to be confined to my trunk area-buttoks and stomach. I due have one area on my right arm.
Julie

[BJK7493@aol.com]

Hi John, thanks for your reply. She is so young to be having these types of problems! My masses are on my right buttock and are now the size of a lemon and then I have small ones on the back of my legs and arms. I also have developed several new ones on my stomach. Mine also looks like bruises but they are very hard and some are tender. Does your daughter have dermatomyositis too? That is what i was originally being treated for and it got really out of control last August when I broke out in this terible rash all over my trunk area and my scalp area. I received 4 days of IV clindamycin up in Ida Grove by the AP doctor and the hives did not go away so he backed me down on the mino to once daily. I then had to start the IV gamma globulin in Sept which took the rash completely away, but with the IV Gamma Globulin, it is also suppose to control these masses from forming. I will most definitely contact my AP doctor to see if I can maybe restart the mino at twice daily. I am also seeing a rheumatologist who sent me to the University Hospital in my state to see a Dermatologist for a second opinion since no surgeon in our town will touch me when it comes to removal of these masses. That’s where the diagnosis of Morphea cam from because they looked at the slide of the biopsy that i had done in december. They said they need a bigger biopsy sample which would require a large chunk of the mass being taken out. How was your daughters diagnosed? look forward to hearing back from you. Julie

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