Fran . . . Hello Fran . . . sorry, I thought your name was Marie!!!
Thanks so much for sharing that ray of hope.
My symptoms started in my pre-teens with chronic headaches. I also had "the flu" a lot!! as a child and when I got "the flu", I would relapse very easily. I was a strong, healthy child otherwise and quite the tom-boy. I had pain in my hands from about
20 years old (not severe pain, just annoying pain). Oddly, during my pregnancies, my headaches cleared and my various aches and pains disappeared. When I mentioned this to my OB/GYN, he said, of course you feel better, when you are pregnant, your body makes more cortisone!! That should have been a big clue!! I went on into my thirties and tried to get help for chronic fatigue and was told it was depression by 3 doctors. I did not understand depression and I "knew" that I was not depressed. I was very happy with my life and my family etc. etc. Finally yet another doctor suggested that I try an anti-d and it made a HUGE difference in my life. I had less pain, and the kids seemed to get along better, hubby seemed much sweeter, etc, etc. . . . then I realized that I really did have a chemical imbalance of some type that was causing my short fuse and misinterpretation of the world. But then one issue after another, requiring repeated physical therapy (shoulder, forearm, wrist, back, chest muscles, hips). . . and the malar rash, hair falling out, sun sensativity (was always an issue), rashes etc. Any workout program always failed because it would just through me into the fatigue and pain. Trying to get my doc to consider lupus caused him to tell me everything was in my head . . . but long story short, a derm sent me to a professor derm at Case Western Reserve University and several visits there and many students marching in and out to try and "guess the problem" . . . and she dx'd me with SCLE (subacute cutaneous lupus). Then a succession of doctors, ortho, spine, pain, gastro, etc. and I FINALLY was steered to a Rheumatologist (by folks here and at my first local Lupus Foundation Support Group meeting). I could just cry for all the time I spent kicking myself to try and work harder and get more done and push, push, push myself. . . . and none of these doctors knew enough to send me to a rheumy.
Anyway . . . back to the question about
the drugs . . . I was put on plaquenil and after a variety of anti-inflams were tried, ibuprofen was the most effective for me. Gradually many other meds were added, high blood pressure meds, saliva and tear producing med, methatrexate , etc. until I was taking about
10 different prescript
ion meds. Last December I got violent vomiting and diahrea . . . it was awefull . . . I couldn't take any of my meds, I couldn't even look at the pills, lest I'd barf again. Three days of that and then it calmed . . . but I couldn't look at those meds. Then I realized MY PAIN WAS GONE!! Hmmmmm maybe I didn't need the meds. Well, at the same time, I lost my rheumy because he stopped taking my insurance. So I didn't run this by a doctor, but hey, I felt better. I went 6 months feeling almost normal (as long as I didn't overdo). When June hit, I began the succession of ills . . . the domino affect . . . and I got right back on the plaquenil and ibuprofen. I really didn't think it was ever going to control my pain and other issues, but finally got to feeling better. Meanwhile I am still waiting (November 15) for my new rheumy appt. He should love me . . . I hope to be quite well by then.
Re: the meds . . . I realized in June that the plaquenil takes 6 months to build in your system to its full potential . . . then it is logical that it would stay in your system for a good while after you stop taking it. I likely felt better, in part, because the plaq was still working. The rheumy had told me I would take at least plaq for the rest of my life.
I do think the meds are important. I was going downhill before I took the plaq and the meth . . . I'm not sure what would have happened w/o it.
I'm glad your mom has a more even temper now. Its awful living in a brain that misfires. I bet an anti-d would have been very beneficial. BTW: I am not on the anti-d right now and I will absolutely take it again if I need to . . . but one of my worries about
taking it was wondering if I could ever function w/o it. I'm doing great in that department right now.
Sorry this got so long. I guess we really needed a phone call!! LOL
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
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