MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
HI!
I know I havent been on in awhile. My spouse is battling cancer and I am in the trenches with him. I have been doing well for the most part but due to some increased pain, mouth sores and rashes, the Dr wants me to go back on Plaquenil. I saw my cardiologist and he has given the OK and I have an appointment to see the eye Dr. My great eye dr died suddenly right after I last saw him. He had said I could go back on Plaquenil if it became necessesary on my last visit with him but now I have to deal with a new one. Meanwhile, one of my teeth split in two, so I am getting a crown on that. All the usual trials and tribulations.
One of my daughters is getting married this fall and her sister is due to have a baby the same week! I am not sure how to handle this one! The wedding is scheduled but you never know with a baby. I was looking forward to her and her husband helping with the wedding, a lot! Maybe the Plaquenil will give me great energy! You never know. Hmmm. I still have some steroids stuck in a drawer............
I was reading about CBD oil. Saw a blurb from the FDA about it interfering with some meds, specifically anti psychotics, anticoagulants and statins. Seems it works on these like grapfruit does. It creates the same enzyme! Something new every day. Hope you are all doing well.
Mary Ann
Did you have to stop the plaquenil because of your eyes? I've been on it for almost 11 years now and haven't had an eye issue, but I recently learned that the pulmonary fibrosis that I have can effect the eyes too. My eye sight has changed significantly this last year from it, the eye doc says it's not from the plaquenil. I keep having to get new readers every 4 or 5 months now.
I didn't find that the cbd did anything for me, but I don't have much pain...mine is all lung related. I tried it for cough suppression but ended up using morphine because it worked better.
Beth
I hope you are having a comfortable summer and think about you often.
Mary Ann
Same here I forgot my password and I could not get on the site for it must be a year nearly. The rollercoaster of Mct dealing with PAH interstertial lung disease now latest diagnoses this year have been ulcerative colitis and PBC . I’m at stage 4 and getting palliative care
Sorry your having to deal with spouses cancer also . Life must be quite draining ..
I need to go back on plaquenil again too as currently I’m on no immunosuppressants after a year on microphenalate which had me in hospital with pneumonia . It’s good to see some old faces and sad at loss of others . Good to read entries from Kat too his trucking along by the look of it maybe not doing so much sports though . Thoughts andblove Dawn