My first sign was an index finger that was painful and swollen. Before I knew it it was both hands. An encounter with someone shaking my hand which felt like they were intentionally trying to hurt me made me realize something is wrong. The diagnosis was RA. My great grandmother was diagnosed with RA when she was in her 30’s so it made sense for the doctor to label me with this autoimmune.
The first Dr. recommended the usual, plaquenil methotrexate, etc. etc. which I did not want to take. I read everything I could both online and from the library. I pulled the book, The Road Back, by Henry Scammell, because I thought it was misfiled. I was looking for books on RA and the title didn’t fit so I pulled it to file it correctly. I swear it was divine intervention, I read the covers and realized it wasn’t misfiled so I added it to my pile. The book saved my quality of life.
It was not a quick fix but I am in “remission” for my ninth year now. I was one of the originals or so I thought, back in the day on the old site with Richie who had Scleroderma and a host of others that posted and answered questions and helped those of us who had to secretly search out doctors to treat us. Minocin was off script for RA and there were few doctors willing to take the risk. I live in CT and would travel to Boston to see Dr. David Trentham who I will always be thankful to. He was at a teaching hospital and was able to prescribe Minocin without an issue.
I was faithful to the timing of taking the meds on an empty stomach waiting 2 hours before my probiotic and taking the minocin 3x a day. I eliminated any allergens from my diet and sugar as well. I took hot baths with epsom and hydrogen peroxide and ate foods that were known to be anti inflammatories. I referred to the site on a regular basis for tips and tricks. My online friends helped me understand herxing and brain fog. Slowly but surely I went from not being able to dress myself or my 2 children to being able to live the life I once had. I was 38 years old with a 3 year old and a toddler and imagined by the time I was 55 I would be in a wheelchair.
I am now 58. I walk 2 miles a day, ski, swim and live life as I did before RA. I took minocin for several years after my doctor told me I could stop. I was afraid of the pain returning, I never want to feel that pain again. I weaned my dosage down, starting from 3x a day, to 2x a day, to 1 a day to the pulse method and then one day I decided I didn’t need it.
I would be curious to know how you are all doing with the Minocycline these days as my guess you are taking the generic version. Years ago I was told to take name brand only, however the name brand is now ridiculously expensive. It used to be .40 a pill when I took it and my insurance covered all but the co-pay. It is a sin what they are allowing these companies to do with medications that people desperately need and I am hoping that the generic brand is working for all of you.
I was so thankful to the resources of the Road Back Foundation and Henry Scammell’s book. Without them I am sure I would be on one of those new drugs to reduce the pain and inflammation. I am now 9 years, no meds at all, and thankful every day that I have my life back.