Your fears are so valid Cher. I have often felt that very same way. All the "what if's". I think that over this past 8 years of having my diagnosis, the "what if's" have lessened quite a bit. I was very sick when I got the diagnosis, and I think, by the grace of God, the combination of drugs that my rheumatologist picked for me to try, were the best ones for me. Prednisone and Imuran. I haven't needed to try anything else. I know there are a quite a few members here who have had to stop one course of medication, and try another one. But you know what? They all got through it. And the new meds work for them!
Most of the medications prescribed for us will kick in and start to work within about 6 weeks. Improvements or lack of improvements show up quickly, and can therefore make it possible to switch the medication or stay on it. That is a very positive thing for us to remember... That the meds can be switched if they don't seem to work.
Hmmm, that is a good question you asked! How much "life" did I get back after I started treatment..... Well, I gained a lot of my life back, but I also lost a lot. I reacted very quickly to the prednisone and Imuran in the beginning. After about 8 months, I really noticed that I felt so much better. What set me back two years after my diagnosis, was a stroke. I hadn't been tested for a certain protein that lupus creates in some people. It's called APS, or the Antiphospholipid syndrome. The protein makes my blood thick and sticky. That's what caused my stroke. I was 28. I will be on blood thinners the rest of my life. What is miraculous is that shortly after my stroke, I went into remission! I was in remission for 4 full years. It was amazing. I continued to take my medications, but all of my symptoms were gone. I really got my life back in gear during those 4 years. The remission ended in the summer of 2007. I had a life threatening allergy to a new seizure medication I was given. (the stroke left me with small seizures). So when that allergic reaction happened, my body went haywire. It was a disaster. I haven't been the same since last June. I'm not bad, just not quite 100% anymore. Lots of little issues that pop up.
So, I do feel like I've gained my life back to a degree. But the lupus is always right there, lingering around, waiting to stir up some trouble. I never feel free from it. To keep myself from going crazy thinking about lupus and all the crap it creates, I pour myself into my photography, family, friends, faith. I think I'd be a basket case if I didn't have them in my life. Do you ever feel like you are going to lose your mind with all this? I do.
Wow, this is a long one. Sorry about that! I'm glad you are so comfortable being candid in your questions. Gives everyone more insight into the deeper part of how this disease affects us day to day. Thanks for being here!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus