Life With Lupus



Sorry I have been away so long. Just trying to be as normal as possible. So recently I was admitted into the hospital for a couple of days and with chest pains. Pains that I have felt before. Pains that reminded me of when I had a blood clot pass thorough my lungs. I was terrified and the doctors gave me the news. My Lupus was affecting my heart again and giving it inflammation. For those of you who dont know me Ive had a mitral valve replacement with a st judes mechanical valve. Some days the ticking and the pain is how I know Im alive and doing well… They put me of cellcept and also found out that im an extreme anemic with my levels running dangerously low. My hemoglobin is 3.71 and I needed a transfusion but it is hard for them to a donor because not only do I have Lupus I also have antiphosphruslipid syndrome which makes it practically impossible for anyone to donate to me. So they put me on this medicine that the seventh day evangelist take and it only helped out so much. I decided to switch up my doctors because I saw how my Lupus doctors showed me no attention or like she did not care so I changed her just like that now I am trying out a new doctor. Keeping my fingers crossed- Belinda


Cellcept methotrexate and plaquinil put me in remission after 3 months. I also got prn injections of prednisone 1,000 hang in there and at least they figured out what it’s attacking


Anyone experience a constant headache while using Cellcept? I’ve stopped taking that medication and I’m hoping that the headache will disappear soon. My rhumetogist doesn’t seem concerned. Should I be concerned?


Rhuemys see so many problems they don’t care unless an organ os about to die in 6 months. I’m gonna tell u I put my bw in remission by diet and curcumin. No daory or gluten and no refined sugar. Added but d 5,000 a day and arthritis went away. Anyway cellcept as an adults have me so many infections and my b.w got worse.


I took myself off the Cellcept a couple months ago. For me, horrible stuff…Yes headaches, nausea and general malaise. Happy to be off it.:roll_eyes:


Yeah!! Headache and abdominal pain are gone! Doctor wanted to start me On Benlysta infusions, I said no thank you!!!


Right on! I have a friend on that Benalysta crap and he is much worse now, but has only been on it for three months. I notice a major c:thinking:hange in his attitude and energy levels. Weird stuff!


I take cellcept and never knew that could be where my headaches are coming from! Plan to take it up with my rheumy.


One of my best lifelong friends is a chemist who used to work for Johnson & Johnson as a medicinal chemist. When she heard I was taking cellcept she contacted me and begged me not to take cellcept. She said it CAN and WILL cause leukemia. She left J & J for moral reasons because they pushed her to create new molecules for new drugs daily no matter how dangerous the new drug was. According to her, J & J was only concerned with volume and profit, showing no concern regarding the safety (or lack thereof) of these drugs. My friend could not continue producing these new drugs in good conscience and left. She is now an advocate for naturopathic solutions to health problems. I trust her. She is a super smart cookie!


Sure sounds like your friend did plenty of research! I have always been interested in homeopathic remedies as well, just not sure how to get started. Any tips?