My wife is 42 years old and was diagnosed with Eosinophilic Fasciitis (EF) two years ago.
She was given methylprednisolone (medrol) 4mg for about 10 months. That was terrible. Her feet and legs are still scarred from the EF which also attached the backs of her hands and wrists. Her legs were affected the most. Since going off medrol, she’s been battling joint and muscle pain. But her eosinophil count has been normal at least. She doesn’t have any antibodies for arthritis; RF factor test was negative. She’s been off medrol for over a year but got localized scleroderma / morphea on both of her breasts in the past few months along with red swollen knuckles and extreme joint pain around the same time. A dermatologist did a biopsy of her breasts and confirmed morphea. She used a topical steroid ointment but it did not help much.
She has one other autoimmune disease (Hashimoto’s) and her thyroid peroxidase (TPO) and thyroglobulin (TG) antibodies have always been very high. She also has a micro deletion at 22q11.2 and therefore has a slightly low T cell count due to thymus hypoplasia. She is afraid to take methotrexate because of a slight risk of lung cancer and because she takes synthroid (also associated with a slight increased risk of lung cancer) and a couple other factors, she is just too scared to take methotrexate. But it is looking like she doesn’t have a choice, does she? Should her doctors perform any other testing and should they be looking for some underlying disease or cancer, or is this likely just all autoimmune related? Are there any good alternatives to methotrexate? Also what do you think of the coexistence of EF and morphea? Does that mean anything? Also an interesting observation for any researchers who come across this; she was also taking T3 (Cytomel) 5mcg and Synthroid 100mcg for years prior to getting EF, but her adrenals were not functioning properly and that was never addressed with anything like Cortef, although I think it should have been (not sure if that was cause or effect), but her cortisol was low-normal (sometimes flagged low) prior to coming down with EF (her eosinophil count was fine while her cortisol was low-norm, and then her eosinophil count shot up and then the EF started up on her legs and feet).
We have tons of lab tests prior to and after she got sick. Also prior to EF, she was exposed to thousands of cats at a conference (we went to CatCon in LA in August 2016) and she got sick right after that (September & October, 2016). Her Bartonella titer was 1:256. Not sure if that has anything to do with all this, but it was merely two weeks later when her eosinophil count went from normal to very elevated (1800 or so, practically hypereosinophillia).
Thanks for any advice or pointers.