A little background...
My RD believes I have RA. I have positive RF (330) and Anti-CCP (370). Before starting Plaquenil and Relafen, I also had elevated Sed and CRP. I experience migratory joint pain WITHOUT swelling.
I started Plaquenil in August 2004. I did really well. No joint pain, no flares. I thought this was great. Last December, my RD asked if I wanted to try reducing the dosage to 200 mg a day. I was doing so great, I said yes. In March I started having the severe, can't move the affected joint, feel like I have the flu, flares again. I immediately went back up to the twice a day dosage. After a month, I called my RD because the increase in dosage wasn't helping. My RD gave me a short course of low dose prednisone. I felt better for a few days and then had another flare which lasted only a week. Another one shortly after.
The flares have now stopped but I am left with a constant ache in both wrists, some knuckles, and both shoulders. Pain I never had before and seems to be worse when it rains. At my last visit with my RD when he gave me the prednisone, he commented that my CRP was normal. He's difficult to read, but he made me feel like I shouldn't be in pain, but then he turned around and gave me the prednisone. I'm so confused.
I'm not sure whether I should call the RD again. Is this constant ache just a normal progression? If it is RA, is it unrealistic to expect total remission with no pain at all?
I have the same question. If there is pain, is there deteriation going on? I was doing really well on Remicade and 10 mg. Arava, except for a low grade pain in my wrists and some finger joints that was fairly constant. My Rd said it was up to me if I wanted to take something more to stop inflamation. He offered a trial of Celebrex, which I agreed to try. After one week I couldn't tell any difference, and then my labs came back (which were taken before Celebrex). My liver enzymes are up so I must go off everything for two weeks. I PRAY they come down because things were going well and I thought this disease was under control ... just take the meds so life gets back to normal. Now I'm worried about drug side effects or worse my RA progressing to auto immune hepatitis (My RD's suspicion, I guess because I'm already on a low dose of Arava). I know auto immune disorders often go together.Jodi~I don't think you really need to worry about your RA progressing into auto immune hepatitis; I could be wrong; but I really don't think that's the way it works.
With RA I think at some point you have to accept a certain amount of daily pain. Granted there are acceptable amounts and unacceptable amounts. Eventually you'll figure out what you're is. Complete remission with no pain isn't realistic and you really shouldn't bog yourself down with that goal. If it happens fantastic; but if you aren't happy with your treatment because you have yet to acheive this goal you are going to have years and years of hard times ahead of you.
Kweenb~I think it might be time for your doctor to step it up a bit with a more powerful DMARD like MTX or even move on to one of the biologic or frankly maybe both. Plaquinel alone with a antinflamatory like Relefin isn't a very powerful combination and if you were on something I mentioned above you would not have to be back and forth on predisone. For me (And I won't pretend to be an expert) my goal has been to keep my meds at a level so that I can avoid regular use of predisone. That's the devils medicine.....it's a vicious cycle you'd do best to avoid long term.
Lovie,
Thanks for your reply. It really helps.
I started out on Sulfersalizine (And relefin) and that worked well for a while. Eventaully I switched to Plaquinel myself. That did well for a long time; but eventually you kind of work your way out of certain meds. I think it happens to all of us.
Good Luck to you.
It really seems to depend on the doctor how they handle it. Both my doctors have been very aggressive so far. But it may be the level of your case that causes them to choose certain medications.Lovie, Thanks for your calming words. If stress/worry is bad for RA then I know I'm in trouble.
Here's my take on whether pain is acceptable or not. If they haven't investigated it yet, then it's unacceptable. If you know there's damage and they have run out of options to treat it, then you live with it.
Pain is an indicator that something is wrong. While we all have pain, joint pain is particularly worth investigating and your doctor should not brush it off without at least a physical exam and maybe a xray. Sometimes, xrays don't show the damage and an MRI needs to be done. Don't live with pain unless you have to.
Also, if you are experiencing high levels of overall pain, then your underlying condition is not being treated adequately. This is important because you don't want the disease to progress.
Obviously you are worried. I think you should call the RD again. Why suffer needlessly if they can do one thing to make you feel better?
I always hurt when the rains come. The barometeric pressure changing is what does it. When the rain finally hits, it seems to relieve all that pain.