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...

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katie 08/28/2017

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.

nonightshades2 08/28/2017

Write it ALL down before you get there and go over each point with the Doc. I think 4 out of 5 visits of mine are exactly what you are asking....good and bad, improvement yet deformity.

Kimhurts 08/28/2017

Tell your doctor it is better, but not as good as you think it can be, then cite your reasons like you did for us. Your doc might say you can't compare yourself to other people, everyone is different, blah, blah.... but that is where you say you are comparing to the results of the overall group and you believe your results, while significant, can still be improved upon and you would like to move on to the next step because preventing disease progression and mobility are of utmost importance to you.

You've got this! Good luck and keep us posted.

Kim

katie 08/28/2017

Well, the appointment well well, in the sense that I think I communicated well. I'm very fortunate to have a good rheumatologist. My concern about today's appointment wasn't that she wouldn't listen, it was more than I would not express myself clearly.

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.

MarleneJ 08/28/2017

Glad your appointment went well, and she listened. There is a test for PsA, I forget the name. I'm convinced I have it, based on some skin issues, but also that I have never had parallel joint flares, and the way one foot got so badly deformed in the beginning, and the other did not. Of course, it caught up.

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.

doodlebug25 08/28/2017

I think it is more common for people to have a mix of response to treatment - some things better but some not. I'm glad your rheum listened to your report of what's going well, and what still needs a little work.

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.

katie 08/29/2017

Good point about bringing everything up, even if it doesn't seem relevant. Yesterday, in addition to the obvious things, we discussed my occasional dry itchy eyes - I thought I might be developing an allergy, but that can be an 'artifact', as my doctor says, of the disease. Also, I picked up a nail fungus at the gym, and my family doctor said he would not prescribe the pills I had used for taking care of an episode of that years ago - with the meds I'm on now, her preferred that I take it up with the rheumatologist. She did, in fact, have a prescription to give me for something topical, and said my family doctor had made the right call there.

When I started this journey, it would have never occurred to me to bring up either of those things.

Dnabella 08/30/2017

I remember the beginning and how hard it was to find my voice I was so afraid that my doctor would think I was being pushy or to needy if I had to many complaints but over the years I have learned that rheumatologists depend on us giving them a full accounting of how we're doing and as time passes your relationship with your specialist should progress to an easy open repore, my doc and I genuinely enjoy our visits I know what he will ask and what he is looking for when he palpitates my joints or checks my feet, lower spine, heart etc. I often tell him now when it's time to switch meds, and evenwhat meds I would like to try!
It looks to me like you have found your voice and that's a beautiful thing, good luck!

katie 08/30/2017

Thanks, Dnabella. I asked my doctor how it can possibly be that literally one finger is better while the one next to it is worse, and she said that's unfortunately the nature of this disease. I said "Your job is so hard," and she shook her head and said "It's better than it was ten years ago."

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.

jolinejoline 09/05/2017

Hey, Katie. Let us know about Stelera when you get there. Never heard of it. Also, I think I understand about concern about mixed messages, but that's how this thing works. For 2 days, I had a weird sensation in my Rt pinky, my only "deviated" digit. It's not pain, tingling, numbness. Something more like Raynaud's, but no cold here. It's probably lack of blood supply, but the point is that I took a body survey, and aside from usual OA aches and busy pains, that was the odd bird. So I made a note.

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.

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