I was DX with SJS in 1999 after having my second daughter I was on the plaquenill for years and found out that my symptoms were getting worse the dry eye was really bad I had to get plugs put in my eyes. I still had the pain in my body and the inflammation in different parts at different times. I decided I wanted to try a homeopathic approach I went to some different natural health care providers and tried too many things at one time . I should have done one thing at a time but I wanted a quick fix. Well I ended up going to my Rheumy and he put me on the prednisone and methotrexeate I got so bad that I could not straighten my legs or my fingers. I thought that I was doomed. Walking was a huge problem and extremely painfull I thought that I would have to go on permanent disability. For my job working in a factory I would walk miles and miles a day picking parts for lawnmowers and snowblowers and shipping them out. But everytime my doctor would give me more medication I litterally felt worse. I had so much problem with my legs, feet, arms, hands shoulders and lots of inflammation of course depression was starting to set in. My doctor did not believe me that I didn't feel that the medication was helping me and I felt that I could not talk to him, he intimidated me.
My commonlaw boyfriend and I decided that we would like to have a child, so I talked to the doctor about the effects that sjs could have on a fetus and I had to decide from there, what sold me was that he said that my symptoms would probably disappear while being pregnant and I was desperate to get a quick fix or a temporary fix just to remember what it was like being healthy. Well we decided that we were definitely wanting a child of our own and I went off ALL medication. this started in June of this year so I have been medication free since June so now that is 5 months and I take the pregvite vitamines that is all and I feel GREAT.
The inflammation is very periodic and my hands are almost back to normal I can run up the stairs. I don't know if it is just the power of the mind but whatever it is I am greatfull for how I feel. Of course I still have to go to the dentist to fix all my teeth which is going to cost me thousands of dollars and I also feel that my eyesight is getting worse but that is better than me having to go down the stairs on my bum just to get around. My mouth is really dry and I have to drink plenty of fluids when eating dry food and when I talk on the phone (one of my favorite pastimes) but I feel that this was the best decision that I made in years for me.
I still have days that I am in pain but they are far and few between. Now lets see what happens when I get pregnant. I have to wait until the end of December to be able to start trying because I am doing a study with the school of optometry on dry eyes which has introduced me to other people with SJS. I am also going to join the support group in my area that I have been looking for. So for me things are looking up.
Ej
Congratulations Ej, I hope the feeling continues for a long, long time. Also good luck with the new baby, they are such a joy.
Keep us updated on the eye study. Good for you for joining in on it.
Pooh
Hi Ej :)
I'm really glad you're feeling better than you were. I have to admit I haven't heard of those particular drugs making people feel worse before - but we're all such individuals - there's no 'one size fits all'!
Plaquenil seems to have helped me. I've never been on the heavy duty ones (pred/meth) I know that I can tolerate some pain killers better than others. I've used homeopathy too - and for some things - it's helped.
Good luck with the baby! I hope you make one soon. A summer baby would be lovely.
Take care - Scottie :)