Registered: 1489695256 Posts: 20
Hello..This is my 1st post, since finding the site. I must say it is very interesting to know had many Lupies are in the same boat as me.
I have had Lupus for 23 years. No organ involvement ever. I had a Total Knee Replacement done in Dec 2016. 4 weeks after I had the worst FLARE I have had. Was in the hospital twice,tests,labs,echo's,ekg,ultra sound and what ever else they could think of. Yet, not one person did tests for Lupus! It was when I finally saw my Internal Med Dr. that the problem was clear as day....This Flare effected my heart, I had fluid, my lungs, I had 600ml removed and the topper was my kidneys! Protein! I have been on 40mg of Predisone,Plaq,Lisinopril,Lasix and CELLCEPT. I am getting better, however, pressure still high so swelling and my hair seems to be breaking off. Has anyone had this happen with Cellcept? I am told the "trauma" of the TKR sent my body into shock and Lupus moved right in ;0( I know I have been very blessed for years with is nasty disease. Was just wondering if anyone has had anything similar.
Registered: 1449242581 Posts: 8
Hi! I'm so sorry to hear about your flare-up! Flare ups can be scary. I too have had a flare up that put me in the hospital with vasculutis and cerebritis. I had lost almost all of my hair due to prednisone, I had to be put on 100 mg!! Cellcept actually saved my life and I've been on it for 7 year sure . My hair is down to my waist now So for me the hair breakage in the hospital was the prednisone, not the cellcept. I know Lupus affects everybody differently and that could go to say the same with the medicines so hopefully it's not the cellcept that is affecting you, maybe the prednisone? Good luck with everything!!
Registered: 1464925253 Posts: 64
Hi bikermom, I'm so sorry you are having so much issue now with this disease , I have had that same thing happen to me also, I have had a rough childbirth years ago which had left my body very weak and need surgery and lots of blood transfussion, after that my lupus flared up so bad that my lungs and kidneys shut down and I went into congested heart failure, I was put on cellcept, steriod and many more meds which left me with big patches of hair missing form my head. I spoke to ryhumie about this issue and he said, it was the steriod, it been almost 18yrs and my hair still falls out.I believe that when lupus flares up my hair falls a lot more, I can't seem to understand what it is really, but I'm used to living with it now and it has become my new normal.
I hope you feel better and good luck to you