Disease management
Hello,
I’m a a 31yo female that was diagnosed when I was 18. I’ve never gone into remission. I’ve tried methotrexate, (made my hair fall out & skin hurt- discontinued), cellcept (wasn’t viable for family planning), imuran, humira, remicaid, prednisone, xeljanz… I’m not sure if I’ve hopped around too much or if my lifestyle choices in combination with the medications nullified the benefits. I’m currently tapering down on prednisone, I’m down to 14mg, tapering in 1mg increments. Very slow and irritating process. I’m currently prescribed xeljanz, and plaquenil. I would like to be on a medication that would potentially allow me to finish my family planning. I have 2 kids, a 10 year old and a 3 year old. I would like one more child. I would like to get my inflammation and health under control first, not sure if this is possible with lifestyle/diet changes alone? Or with plaquenil/imuran, something like that. I have no lung involvement, and am currently being tested for heart involvement. I currently have 12mm kidney stones in both kidneys and have shock treatments scheduled. My kidney function is currently not great, I’m looking for ways to support my liver, kidney and heart health. Most of my disease has been located in my left thigh, granulomas that cause my left leg to swell & has been growing since I was 18. The only thing that has really gotten this swelling down is very high doses of prednisone, but the effects of all these meds really do me in.
TLDR;
•I’ve never spoken to anyone who has sarcoidosis like me. What has your experience been w/ living with this disease? How do you manage it? Have you ever been in remission? How?
•I’m in Michigan, is there anyone here that has any experience with good doctors/resources?
•What medications worked best for you? What lifestyle/diet?
I feel very alone in this all the time, and I’d love to talk to others like me. As you all probably have experienced, this disease takes lots of personal research and study- I often feel like I’m drowning trying to be my own doctor without the credentials or ability. My 20’s were a struggle and I’d really like to get my sh*t together in my 30’s so I can live a good life for my kids.
Thanks for reading. 💜