Hi Laura,
That's the problem, I am having more flares meaning more inflammation along with pain and red joints. Over the last three weeks I've had a flare in my left ankle and big toe, left thumb and right middle toe, along with pain in my hips(lower back, buttock) shoulders and back of my neck. The swelling in my thumb has gone down a bit, however one side is still swollen more then the other and pain on that side. My ankle swelling is gone, however the toe is still sore. My middle toe is still swollen, red and a big bump on the inside of the toe.
The flares(swelling) is lasting longer then it use to however the pain is more tolerable. Any increased activity, increases the pain. For instance yesterday I took my dog for a walk and when I got home my hips were burning in pain, sitting caused even more pain as it seemed to pinch a nerve. It feels like bursitis in my hips along with piriformis syndrome. I have had both over the years, however now it's a daily thing.
Increased time standing, my feet start to ache and burn, same with my hands when I increase activity, aching burn. I also have pain in my wrists and elbows, however that pain seems to come and go. I'm having increased tendon and muscle soreness with activity. I find the pain changes all the time, hips will be bad for a few weeks and then my shoulders.
The positives I have seen are less stiffness in the morning. Less pain with flares, prior to these meds I was using pain killers and sleeping pills to get through the few days of intense pain. That was the pattern of my flares in the past, swelling and unbearable pain for a few days and then it would ease and the joint would go back to normal. Now I have the same swelling, with less pain however it's increased to more joints then usual.
As far as pain meds, my doctors and I decided that I would try to use very little so that I can see how these meds are working. I'm managing alright, there has been a few times I have had to use Tylenol 3 and Celebrex. I have been thinking about staying on the Celebrex daily to take some of the edge off, but I'm not sure I should be adding more and worry about taking too many drugs.
I had an increase in nausea when I was increasing the sulfasalazine, however at the same time I am also having flare after flare and increased nausea has been part of the flare in the past. I am taking notes, pictures and waiting to see if I have any change. I'm trying to be active daily, as my goal is to get back to work and work is a very physical job. I'm pushing myself more and more even though the more I do the more pain I have. Using crutches to get around when I can't walk. At this point I'm thinking this is the new me and flare or not I have to be able to have some sort of functioning life so I am starting to push myself more and more and adjusting to the new pain levels as best as I can.
Laura E D said:
Hi Tara,
Tell us a little about the flares that you are having. Are you having a few new flares everyday? A flare every few days?
Success is not always so easy to measure or compare with these drugs. None of them made the disease completely go away for me. All of them helped to make life more manageable. Is that failure? Partial success?
I'm someone who kept on using all of the drugs that you mentioned for the length of their usable life. What I mean by that is I took them until I my body reacted suitably strongly to the drugs to objectively make continued treatment no longer safe. I was in no hurry to run through the entire Rheumatological pharmacopoeia, although I seem to have managed that!
One thing that I would mention is that for me inflammation and pain were separate phenomena. Once we managed to get the inflammation under control with DMARDS and later biologicals, I still had pain. So then we treated the pain issues...How is your inflammation? Are you taking anything for resolving your pain? How are you adjusting?
