Discouraged

I haven’t been on in a long time, but low and behold, the cold weather is here and let the flares begin. I’ve tried almost every drug out there now with no success. I think the only ones I haven’t tried are humira and remicade. I have been back and forth to the dr the past 3 weeks with severe pain in my right shoulder and left hip and all she can tell me is to deal with it. I had a reaction to the enbrel so Thursday she wants to try something new. I saw my PC today and she really is the best, other than her giving me pain meds (which my rheum would not) and telling me how great I’m doing working though this, she gives me hope that some day there will be a better “cure” for this. I feel like these are supposed to be the best times of my life right now, but this is wearing me down and preventing me from doing things I want to be doing! This is purely a whiny, bitchy post and I apologize, but I have no where else to do so! I’m also wondering if anyone has had the same issues with the drugs I have, I can’t handle mtx, plaquenil didn’t work, reaction to enbrel, sulfansanite? Didnt work…I also only weigh 105 and my dr keeps telling me that my body can’t handle a lot, so then how do I get this under control? And when my flares are this bad, what can I do? I know everyone reacts differently to these meds so what works for one won’t for another, but what happens when I run out of options? I am just very discouraged and my dr is putting me on Zoloft to make me feel better as much as I hate those kinds of drugs, I will try it, probably better than taking up to 2mg of xanax a day. Need a little boost and not sure where to get it…

Oh yeah, and I’m prednisone again, which could be why I’m so crazy!!

Dear Its...if you can't come here to have your pity party, where can you come? As long as you don't lash out and make others miserable, hey, it's A-OK. Well, it's not OK-OK, I'm sorry you're feeling really miserable. This is such a difficult disease, isn't it, hard to treat and slow to respond. But give it a weather change, and hey, it's right there doing its thing.

I think it's worth giving the zoloft a try (although I had much better luck with wellbutrin). Like you say, it's gotta be better than the addictive stuff like xanax.

Chin up, better days ahead!

And yes, prednisone could be a factor: it turns me into a witch.

Getting the meds worked out is the worst part of this disease. I think that is what makes the first months especially difficult, and causes the most upset no matter what stage you’re in. It’s scary plowing through each med, and not getting the results you need.

I’ve had a lot of struggle finding the right drug. I thought that Remicade was working, but now I’m not so sure. It’s doing something, but I’m still not where I think I should be. I can’t bear the thought of putting my life on hold (again) while we try another drug (again) that may or may not work (again)!

Unfortunately, we don’t really have a choice in the matter. If we want to take care of ourselves and prevent the dreaded irreversible damage of this disease, we have to keep on keeping on and try the next drug on the list. Who says we have to like it?!

I’m right there dealing with the same pile of guano that you are. It really stinks!

Ps. Prednisone makes me act like a complete whack-a-doo. I really head off of the cliff when I have to take it. You aren’t alone in that. Don’t worry about your rant. It has to come out.

I took prednisone for about eight months–maybe more. When I first started taking it my colleagues would congregate outside my office door around 3:00pm when the afternoon crazies would set in. I was like a headless chicken, running here and there, doing little bits of everything and not finishing anything. I would be breathless and exhausted by 5:00pm. But it was, apparently, hilarious to watch. Glad I could offer some comic relief.

It totally stinks when you’re in need of help, something, anything, and you’re not given a magic pill or even some advice on how to cope. You’re just told to deal with it. Makes me want to answer “deal with this…” But then again that’s why I’m taking a mindfulness and stress reduction class! I do hope you get some relief soon. And venting here is safe, like Seenie says. Deep breath, Itswhatitis. And exhale…