Had an appt today with rheumy. From the begining, I have been told that the ultimate goal to taking all these awful meds is to "achieve remission". What I keep forgetting to ask is, "what if it doesn't happen" Where do you go from there? Do you continue to get worse and lose what little mobility you have left? My question is, how many of you have gone into remission and how common is it and how long did it take? If not, do you just keep taking mtx and humira or remicade forever and just hope that it's doing enough to slow the disease? Although it may sound funny, I keep picturing myself in a wheelchair, humpe over, staring at the floor and not being able to turn my head because my back and neck have finally fused together. I have only been taking humira for 4 months. Not expecting a miracle but there has been no relief.
One type of remission is with meds, the other is without meds. So some percentage of people have a remission and can go off meds. The vast majority who have a remission will stay on the meds, although it may go down to just monotherapy (one med). And for some people, it will be a progression, but slowed down to a crawl by the medications.
You said you've been taking humira for 4 months. . . . It may not be the right medication right now, or you might need something added to your medication mix. You may need a bit more time too. It's definitely something to talk to your doctor about.
Honestly, even if I never achieve remission, I will be happy with progress slowed down to a crawl with meds. I just started my first biologic, so I'm pretty hopeful.
The goal of these "awful meds" is to slow the progression of PsA. This is a progressive disease. The meds keep you functional for longer, so you can have a longer time living life before you end up losing more and more mobility. I know in the beginning it is hard to understand, but you have this disease for the rest of your life. There will be times when it is better, and times when it is worse. But you want to avoid damage as long as possible. Once it happens, it's permanent. Down the road you will be kicking yourself if you didn't do everything you could to slow down the progression of this disease.
Remission is rare. You can shoot for it, but it may or may not happen. Also, even if you do have a rmission, it will end at some point. The meds you take are here to stay, unfortunately. It's tough to deal with this reality when you are first diagnosed. I'm sorry you have to deal with this disease. It is truly NO FUN AT ALL.
ps: like Stoney said, if Humira is doing nothing after 4 months, talk to your doc. You might have to change meds.
Thanks for the info. The only thing that keeps me some what mobile right now is the steroid injection that I get every three months. Bad thing is that it doesn't last very long. I didn't know that remission was relatively rare and have never asked my doc. Taking Humira once a week right now but if it doesn't seem to work, I am probably going to get switched to remicade. As bad as I feel most of the time, I can only imagine how much worse it would be if I wasn't taking anything. I think that the worst thing is that I haven't been able to work for almost 2 years and that's why I wondered about remission. I'm so limited physically that I can't find anything that I could do long term or part time. O well. I'll just keep plugging away.