Lupie ~ I def feel your pain. I was finally actually diagnosed with Discoid Lupus 3 yrs ago. I have yet to get under control. I was then diagnosed with SLE about 1 yr ago. The bad thing is I have Ehler's Danlos Syndrome which is eating the connective tissue between my joints. I also have seizures due to having Chiari Malformation. I take a cocktail of medicines everyday. I am currently on Plaquenil 400 mg a day and Cellcept 2000mg a day. My husband and I have both said I wonder if stopping all of medicines how I would feel. I will tell that I came off the Cellcept for a while and felt no different. I am shut indoors 6 days a week and sometimes 7 days. It is very frustrating. Let me know if you find anything that helps.
I wish you well and pray that one day soon you will feel well again.
Sis… Really good ideas. Thanks. I will try them. Epsom salts sounds like a very soothing idea. It’s great to hear ideas patients have who know what works. I made it sound like I was bedridden. Not quite that bad. Do the housework, grocery shop, etc and watch grand kids sometimes but sitting up in a chair all day visiting with family is very painful and extremely exhausting. The only reprieve is lying down. I will try to do more like you said though. I feel good when I am actually doing it then pay the consequence later or the next day. Maybe that’s the fibromyalgia too. It’s hard to get my dr to give me meds when the labs are good. My labs and how I feel don’t measure up. I’m usually feeling ok when he runs the labs anyway. Best he’s done is say to try Lyrica for the pain but that is a strong drug with so many side effects I am Leary to do that. I always wanted something to stop the inflammation. That alone would stop alot of the pains. I’ll see what he has to say next appt. thanks
Zipperhead, that’s a lot to deal with! Sometimes I came off meds and found out I felt so much better. For instance I had arrhythmias and chest pain that was really bad. Limited everything I did. After big workup no problems. Ran out of heart med and didn’t have any money to get it for a few weeks. Yes I know that’s bad. Lol. But lo and behold cured my arrhythmias and chest pain. The med caused it and a yr later haven’t had any more. Lol. Then there are times when I went off a med like Celebrex and it has been awful. It works so well for me. I tried probiotics on a whim and it totally cured IBS. That’s why this forum is so great. We get ideas and answers to questions we can’t find at the dr. Being shut up all week because of all our medical issues is not a way to live. But I do have hope for you and all of us that we will come across the combination of meds that allows us to live a better life. I try to use 80 percent of all the energy I have in a day. The extra twenty used would set me back weeks. Doing 80 keeps me pushing the limit daily. Hang in there and I know you’ll find the right combination that works for you.