we are all different and some of us worse than others- realize it is individual but my question is this.... is it inevitable that sjs only gets worse? can it just stay the way it is- maybe with flare up here and there??? Im trying to figureout if I have to be on something to slow it down- like plaquenil or not....
lori
Lori
I think, for many people, the SJS can remit, or certainly not progress too much. The problem with this wonderful site though, is that it's probably used predominantly by people who are strugggling with some of the less common effects. Maybe the people who have 'minor' problems don't need the same level of support.
This is just my two penn'orth.
Hugs
Kathyx
It's all about your quality of life. How bad are your symptoms? Do they create problems for you in your day-to-day life? SJS does tend to be a progressive disease w/out remission, but it often moves fairly slowly. Personally, I need meds. That doesn't mean that everyone does, though.
On the whole, I'm doing much better now that the meds have kicked in. If I had just let the disease progress--or even just stay as bad as it was during my first big flare--I would be miserable right now. Instead, I'm still working full time and don't have to worry about scaring small children with my red eyes (they're just a little red now, instead of screaming red like they get during flares).
Plaquenil helps manage the disease, evoxac helps treat the symptoms, and prednisone usually gets me out of a flare within a few weeks. None of them are dangerous drugs at the doses I take (400 mg of plaquenil, 3 evoxac pills a day, 5-10 mg of prednisone when flaring).
I've mentioned here before that my rheum always tells me that I don't have to feel sick just because I have a disease. Now, I always have a few symptoms, but I do have lots of days when I'm OK. That wouldn't happen without meds.
Hi :)
I had this a loooong time before I was dxd so obviously was not on meds during that time. The disease flared round about menopause and was finally picked up on. I would say it stayed pretty stable for over 20 years before that flare, with occasional flares that weren't recognised.
Over the past few years it feels as though it has progressed but to be fair, I don't know how much of it is SjS and how much is the ageing process. EG - I have osteoarthritis and that isn't SjS related. The hiatal hernia probably isn't either. I tolerate Plaquenil really well - so if it's slowing things down - I'm happy to take it.
There are other diseases where progression leads to death. SjS is not known for being terminal. Like you very wisely said, we are all individuals, so have to make choices based on our own experience and the advice of our doctors.
Take care - Scottie :)