OK, until about 3 weeks ago I was doing really well as far as pain and swelling goes. Gradually over the last few weeks my hands have been getting swollen again, like before I started MTX. My hips and feet are gradually ramping up in the pain department too. For the last 3 days I have been needing pain relief during the day (usually only take it at bedtime), and having to have extra at night to sleep. My left hand is about the same as it was before I started treatment and the others are all getting worse (ie: no symptoms before). Again I can't open jars, hand hurts if I bump it, NO strength, and pain when I use my hand. My hips are really bothering me where they haven't had any symptoms at all except a bit of bursitis. My feet feel puffy and achy and I'm not able to walk as usual. I'm also not sleeping well again.
I see my rheumy next Wednesday. On my last visit she said we might start arava with the MTX. Could this be the end of the effectiveness of MTX? Will I have to go on stronger stuff? Would injectible MTX be worth a try? I'm going to ask for stronger pain meds too, even if it is just to get me through till meds start working again, the panedeine forte just isn't touching the pain. Something stronger to take at bedtime would be a help.
This is the first time I've deteriorated so quickly and with so many joints all at once. It's got me scared that things may be happening faster than I'm prepared for. I've actually been thinking that work might be something I have to give up. (Not until I've had my South Pacific holiday, no way I'm giving that up). I guess I better pay off the credit cards ASAP in case I end up having to stop work.
Any thoughts on what I should ask my rheumy when I see her would be appreciated.
Have you tried plaquenil or sulfasalazine with the mtx yet?
How much of the mtx are u taking now?
20 mg mtx. not taking anything with it yet. maybe start something next week. I hope we can get back to what it was before this started happening a few weeks ago. I really want to slow this thing down as much as possible.Once I got up to 17.5mg my RD insisted we add something. He said he didn't think an increase at that point would make much difference. That's when I started Humira. Did really great on that for two years.
I've since been taken off Humira but 20mg of MTX seems to be working pretty well. It's not as good as when I was on Humira but it is working.
If you are already at 20mg I'd say it's probable time to add something. Biologics works well for so many; but Kelstev mentioned there are other options. Might be worth a shot trying one of those and save the biologics for later.
Dear Pammy416,
I've added Remicade and taking Prednisone until we find out if Remicade is working? I've taken MTX for ten years and until Heart surgery Dec. 1st. I was doing fine. Now, I'm struggling to find a new combination of drugs. Good Luck, Not hurting today, 4 whole days!
Pammy, I've been going through the same thing. I've been on an Arava/MTX mix since July, and, until the end of December, it was a miracle. All of a sudden, everything went. I couldn't walk, I couldn't raise my arms, I couldn't move my hips, I couldn't close my hands. It was really, really scary. Also couldn't contact my RD because she was moving her office at just that time.It does sound like a flare. You shouldn't have to consider giving up work at this point because the biologics could provide you enormous relief.
Also talk to your doctor about doing other things to maintain your function like exercising or PT and any vitamins that might help like Flax Seed Oil, etc. Doctors are usually very favorable regarding these as they help you do better without dumping more meds on you.
You might see if they can either work you in a bit sooner or will let you try some pred to get past this flare. In other words, it doesn't hurt to call.
It is scary to have things progress a lot faster that we expected. A couple of months ago I had a freak out period because the symptoms popped up in a bunch of new joints, a lot of them joints that aren't "supposed" to be affected until you've had this for years. Hah. I'm still learning how useless those "supposed to" lists are.
I also had beginning of the end?type feelings. But more time with the meds has helped some in my case, and I'll bet a new regimine of meds will help in your case too. It still stinks out loud to be shocked by sudden progression, because once we've progressed, well, that's our new high water mark. But I'll bet that once you get past the shock of it and get some medicine adjustments it will seem more hopeful than it does now.
I think you have every right to feel stunned and scared. Try to leave room for hope too, it's probably not as bad as it feels right now.
Thanks guys. I needed to know that there was still hope, maybe even without going straight to biologics. I will be patient and see what happens on wednesday. Now I have a list of questions for her thanks to you.
As our dear friend Monty Python says...'Always look on the bright side of life'