In 1999, lesions that had been developing for about 10 years on my adult daughter’s upper arm and stomach were finally diagnosed as scleroderma. It was good to have a diagnosis but frightening when we researched it, never having heard of this disease.
The doctor told my daughter there was no treatment but I couldn’t accept that and in my search I found The Road Back. Little did we know that the information I gained at that time would be so important in 2006. Her scleroderma was never treated, just documented and as it was not worsening and seemed mainly a cosmetic issue (which she mainly ignored) , we did not try to get an AP doctor. The lesion on her arm was hard and shiny, about 2x3inches, the one on her stomach a bit larger. In January 2006, my daughter woke up after painting her condo, with a swollen and sore knee. She thought she must have bumped it. Over the next two days the swelling extended to both knees, both hands, pain in her shoulders and feet and so much pain in her jaws she could not chew solid food. Some of her fingers were very swollen with angry purple swellings over the joints. She could not sleep and getting in and out of bed was a terrible ordeal. An Urgent Care Clinic referred her to an autoimmune clinic where she got an almost immediate appointment. She was put on methotrexate which did give her some much-needed relief. This was helpful as she has a responsible job, which she really needed being a (newly) single Mom of an active preschooler.
During the next month I researched AP in earnest and when my daughter had her 3 month appointment she asked me to accompany her for support as she was going to ask her rheumatologist for Minocin. I was armed with lots of print and a mother’s determination to get her what she needed. To our surprise and relief, when my daughter told her doctor (a young, female rheumy) that she did not want to take MTX but wanted a scrip for Minocin, her doctor agreed. She explained the pros and cons and was not very conversant with Minocin, but willing to look it up and willing to let my daughter try it. She prescribed 200mg daily, which made my daughter very ill. However, once she cut back to 100mg MWF, within two weeks her symptoms were virtually gone. It truly was like a miracle! When she saw her rheumy again, the doctor said that several other patients had also asked for Minocin and all had the same good results. The doctor indicated that the clinic was going to take a serious look at this alternative.
For a brief time in the fall of 2006, my daughter did try to increase her Minocin dosage, maybe too quickly. It caused her a lot of pain and she cut back.
At this point, July 2007, my daughter is continuing the 100mg. MWF and does get some symptoms when she is very tired or stressed. These symptoms are very mild compared to the onset.
Several weeks ago, when I saw my daughter, I happened to notice her upper arm. We had both been so focused on the RA that we didn’t really look at the scleroderma lesions. The lesion on her upper arm had reduced to a small spot, the skin was softened and had a faint purplish mottled effect!! I could hardly believe my eyes. My daughter says the lesion on her stomach is the same as always, but perhaps there will be improvement there in time.
It is hard to put into words how grateful I am to the Road Back Foundation for the information and support they offer. It does not bear thinking about where my daughter would be today had we not found AP. Starting very early on seems to have been a factor in her recovery, but we encourage anyone with these diseases to be open-minded and give AP a good informed try.