It never ceases to amaze me how doctors can take little bits of information, ask seemingly unrelated questions, and tie everything together.
- sulfasalazine (a supposedly mild DMARD) makes a huge difference in how I feel
- my feet and ankles hurt again*
Who would think to put these two pieces of information together and examine the patient’s back?
That’s what happened when I saw my rheumatologist last week. She then said that she wanted to order another lab test, but when she told me which one, I was able to open my handy-dandy notebook and give her the results from when my previous rheumy had that test done. Time and money saved!
It’s so nice to have a doctor who treats me as if I might possibly be competent. I’m to continue with my boat-load of meds, assuming that I’ll continue to improve as the ssz has more time to work. In a month if I’m feeling well, then I can discontinue the hcq and it will just barely have time to get out of my system before I see the doctor again for my next follow-up.
This will be the first time this doctor has given me three months between appointments. I look forward to six-month follow-up someday, but for now will be happy with what I can get. It’s progress.
Comments always welcome.
________________
*and knees and wrists and elbows and both shoulders, if we’re counting, which I wasn’t. I hadn’t even noticed that my elbows were sore, but about jumped out of the chair when they were examined. Apparently my tendon insertion points have some issues.
∞ itis 
Glad that the SSZ seems to be helping, Socks. And I hope that it will continue to help and, with time, help even more. As for the foot pain, IS that something that’s originating in your back? I’m fortunate in that I haven’t had foot pain (that awful walking-on-sharp-gravel pain) for a very long time, but oh, do I remember it! I could be flare-free in all my other joints, yet yelp with pain the moment my feet touched the ground in the morning. It meant limping along all day long, and it was always exhausting. I hope the SSZ takes this away for you.
Docs ARE pretty darned good investigators when they care enough. Glad that your new doc does. :o)
I remember back in the beginning when I would dive back onto my bed in the mornings because it hurt so bad when my feet hit the floor. Memories of that pain are what keep me taking all my meds.
This foot pain is different. Not the shards-of-glass sensation that gets better once you get moving, but a different quality that I haven’t been able to describe. It’s better when I stay off my feet, so I’ve done a lot of sitting lately.
Even more bothersome is that my toes are back to feeling like they’re on fire all the time. There is no relief from this – but it mostly went away a couple months after I started taking ssz the first time, so I’m hoping that it will soon be a thing of the past. I didn’t mention that to my rheumy.
Psoriatic arthritis, rheumatoid like, maybe with pustular psoriasis? Or some other form of spondyloarthropayth? What kind of back problems do you have? I keep telling my rheumy that my low back problem does seem to have some kind of inflammatory component, even if it’s secondary, I think the pred and mtx help it and gets worse if I lower doses. I don’t think I have psoriatic arthritis, but I sure do feel like I have more pain from tendons and ligaments than the joints themselves sometimes. How did your rheumy decide on the problems with the tendon insertion sites versus the joints?
Spondyloarthropathy is exactly what she mentioned, but I’m HLA-B27 negative. She was very clear that I’m already taking the meds that would be used for treatment if that’s what’s going on.
As for her decision, even when the swelling is controlled, I still hurt at my wrists/elbows/knees/ankles. It’s especially noticable when she checks my ankles; she’ll check one spot toward the front/side of my ankles and find no swelling, then check the achilles tendon and have me yelp in pain. Moving to the knees, she checks one place (mildly squishy, not too bad), then another that causes a stronger reaction. Same with the elbows. I’ve started reading about AS, and one thing that’s mentioned is calcium deposits from chronic tendonitis; those I have – so maybe she had a third clue.
Glad the sulfasalazine seems to be working and hope the foot/ankle pain is just temporary…We need some good news in our lives sometimes! 🙂 L
I keep thinking of how good I felt in Feb/Mar, and am hoping I can get that back. Things are improving, though 🙂
I’m so happy to hear that your doctor is a good one that hasn’t given up on your case and is still searching for clues. I have been inspired today by your notebook link. Read over your notebook notes, and let me just say that I wish my medical notes were half as organized as yours! What a great idea to take pictures of every form they give you at each appointment. Would love to have pic.s of all those forms I’ve had to fill out that rate my pain and ability to do certain things. Thanks for the detailed organization info. and the inspiration. Praying you continue to feel improvement.
I’m glad my notebook was some help to you. So many aspects of RA can’t be controlled; I find it helpful to at least control one small portion by keeping track of my data. Let me know how it goes for you.