Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I have an appointment with my rheumatologist today.
She's going to ask how things are going, and if I'm satisfied with the current meds.
It's a yes-and-no answer. I hope she will hear both sides of what I'm saying. (I think I'm posting here to practice how to communicate my answer.)
Please, I'm not asking you folks here what meds I should take, okay? We are ramping up my meds as fast as the insurance company will allow. I am taking MTX and Humira right now.
I'm asking how I might convey this more precisely. This is what I need to communicate today:
"My hands feel tender and tight. It is painful to make a fist. Specifically, three joints are affected at the moment. I have a knifelike pain in those joints, and they are starting to swell.
However, the PIP joint on my left index finger is considerably less swollen in the last six months. Last winter, it was to bad that it impaired the nail growth - there was a curve, or an indentation, at the base of the nail (not a ridge, not a PSA symptom - this was the whole nail curving inward due to pressure on the nail bed from the swelling.) You can see now that the new growth is a normal shape, and my photographs show that the swelling in that joint has gone down considerably. I believe that this improvement began when we increased the dosage of MTX and switched to injections for it.
Also on the plus side, I feel good overall - less exhaustion, less brain fog, more able to do my work. All of those things are improved. But my hands are definitely not right."
Have any of you ever gone in for an appointment where the answer to "are you feeling better?" is mixed? I'm confused by literally having one finger be significantly improved while the one next to it is worse.
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I've been on high dose prednisone for pneumonia, and now I am slowly weaning. But lots of symptoms I don't like having, plus overeating has put at least 10 lbs on me. The food is "loud" as the GLP-1 users refer to it.Also pressured speech. Which comes out in my posts. Sorry I posted so much. I just need an outlet for my agitated and irritable brain. Just scroll on by my posts, if they are too...
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I haven't been around in a long time. I am admin in a private group, and I would like to upgrade someone else to that position. I thought I knew how to do that, but the prompt has gone missing. Or is it not allowed to upgrade someone else to admin? I just find "ban and demote" under "Edit." I don't get notifications to DS anymore, but I wil come back in a few days to find out the answer. There...
You've got this! Good luck and keep us posted.
Kim
We are switching from Humira to Stelara to see how I do with that.
Yes, Stelara is for psoriatic arthritis. I have never had a definitive diagnosis; my chart actually has "PsA / RA ???" written on it. I have never had any skin or nail symptoms, but I also don't have the markers that make RA an absolute. The first finger joint that was affected pointed toward PsA, the second one to RA. So far, the treatment would have been the same either way - Plaquenil, MTX, Humira.
Probably a month until it's approved, during which time I will continue the Humira. It will start with a loading dose, and then an injection every three months. The injections will happen at the doctor's office and can coincide with my regular visit.
We'll see how this goes. I did find out, and want to share with all of you, that there would be no bureaucratic problem going back to Humira if this doesn't work, so that's reassuring.
I always forget to ask for the test. I can find out the name, or probably google it. For me, if Orencia fails, I'm always thinking about alternative biologics, since I have used up all the RA ones.
Let us know what happens with the Stelara. And yes, always tell the whole story, as in, things are better, but not good enough, within reason, of course.
For what it's worth, if you are seronegative, some rheums will be a bit vague or give mixed diagnoses since it is an evolving process. Some things over time may point toward one or the other. I have similar hand/finger tightness that you describe (but no nail issues) and my rheum has said if I would have even a tiny suspicious rash, he would send me for a biopsy to see if it's Ps, as that would explain my symptoms. But, yes the treatment at the start is the same. If you respond well to Stelara, that may be helpful in your diagnosis. Hopefully you'll get relief of those remaining symptoms.
When I started this journey, it would have never occurred to me to bring up either of those things.
It looks to me like you have found your voice and that's a beautiful thing, good luck!
You've touched on something important, and that's the idea that speaking up isn't being 'needy'. I wasn't raised in a way that encouraged speaking up. It's something I had to learn as an adult. I regret that it took this long. I'm not speaking specifically of RA here, just life in general.
Dnabella, I was intrigued by something you said: "I often tell him now when it's time to switch meds, and evenwhat meds I would like to try! " How often do you switch drugs, and do you have some agreed upon protocol for evaluating and suggesting the meds you want to take? It's nice to have a rapport and working relationship with docs, but that sounded a little different to me. Just wondering.