I had some bad side effects from Prednisone but hydroxychloroquine (Plaquenil) has been very helpful. It took about six months to really kick in. The main benefit for me is less swelling and fatigue. Before taking it and having it kick in, I was exhausted every day and actually reached a point where I spent more time sleeping than awake. It was spooky and there seemed no end it sight. Wishing you the best of luck with this.
I'm glad to hear its finally working for you. This disease is a constant battle. You just never know what will trigger a flare. Being diagnosed over 14 years now, I've seen the disease affect so many different parts of my body. I've been on plaquenil for 14 years. It did take a while to work for me as well. My Doctor took me off for some reason after I had been stable for about a year. Not too long after that I developed horrible apthous ulcers and my sed rate and crp went through the roof. I was put back on and never went off again.
Just make sure to get your annual ophthalmology plaquenil screening to check the health of your retina. I'm glad that we have this site to support each other. Its a lonely and frustrating at times, and comforting to know that there are others that actually understand what we're going through.
Thank you for the great Post ! I have chronic apthous ulcers, along with dry eyes, mouth etc etc…i think every thing in my body is a desert, which started in mide 90’s and past 10 years has become horrible. I am sold I have sicca , which i think is also Primary Sjogrens . I am neg for lupus and RA, but I have many of the symptoms. On top of that i survied stg 3 Breast cancer and a rare brain cancer and live with all of the long term effects of chemo and brainradiation. ( brain injury etc.) I was a nurse. I am going into my 12th week of having 7 large athous ulcers , with 2 still trying to heal and more starting. I am told there is nothing to cure this insane pain 24/7 . Anyway , life is very difficult and has been for years, so I am very thnkful to find this group and share our experiences and support. TY
I have been on restasis for a year and big help! I use all the biotene products when not crying from pain, lol . I also have Salogen for moistre producing in the body…I dont use that often as too amny side effects. Woulove to hear from you and others also. TY
I certainly am able to relate to your post !