I have SS secondary to RA. I take Evoxac/Cevelimine 3 x day. Have taken it for years and it's a game changer!
I had a slaivary gland scan to confirm DX and my slavary glad is basically non-functioning. I lost 30 lbs before I was diagnosed cause I couldn't eat anyhting. If it wasn't for ice cream, i would have lost more!
Evoxac turned it all around.
So now, I'm 75 and have been experiencing shortness of breath when I walk - much worse when it's hot and humid. I'm trying to get an appt with a pulmonologist but I just thought about it and looked up the side effects and BINGO!
So now, what do i do? I will see what pulomonologist says but I guess I have to stay in on hot humid days like people with asthma and maybe limit my walking, which sucks right now cause my exercise class that I did 3 X week is cancelled cause of covid, so wlaking is the only exercise I get. Have to star exercising indoors to videos.I have zero motivation.
I am one of the least vain people i know. The song is definately NOT about me! NO makeup! No manicures or pedis. I shop in thrift shops and wear shoes that are COMFY!!BUT, my hair is falling out and I shed all over the house more than a pet...and when I look at pics of myself taken today compared to even a year ago ---- UGGGGH!It had happened to me decades ago on MTX and stopped when I stopped...
I'm still on 5mg prednisone so they need me off since I broke my leg by simply walking. They are thinking of switching me back to Actemra because the 'allergic reaction' I was having was probably undiagnosed Mast Cell Activation Syndrome. I'm now on meds for that and the doctors are thinking of trying again but monitoring me closely. Has anybody else had their immune system activate mast cells...