And my rheumatologist finally calls back to see my swollen joints…a day too late

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My foot a week ago

Almost immediately on starting this prednisone taper, my joints started to swell. Most pronounced were my ankles, but my fingers, toes, wrists and knees were also obvious to me.  And I could feel the fluid in there.

They were very swollen, but no more painful than usual I think, for around ten days.  I sent photographs to my rheumatologist of the initial swelling, and then during the second week I send photos from four separate days, to show her there was some mild variation, but the swelling was constant and very obvious.

On Monday morning the swelling subsided.  I had ankles again! Yay!

Same foot today. Big difference.

Which is very strange, because on Sunday I dropped another 2.5mg to 10mg of prednisone.  I didn’t expect the swelling to disappear at all.  But of course, it DID, because on Monday afternoon my rheumatologist finally decided to call me back and ask me to see the swelling.

Oh the irony.  I had to tell her the swelling had now dispersed.

I told her it had been very severe, as the photos showed, it even felt like my skin was going to burst on some days, but now it had gone.   Not completely, but mostly. I certainly had nothing impressive to show her.

She said she needed to see the swelling, examine me, to ascertain if it was fluid in the joint or what else might be causing the swelling.  I said I wished she’d called last week, because I could have shown her plenty then, but now my joints were back to looking more or less normal.

The pain, however, remained!

She asked if I wanted to come in, I said I didn’t see a point if all she wanted to see was swollen joints.  I did tell her the taper was tough, and I am getting little respite from severe pain.  She said if it the swelling returns to call immediately, make sure the message got through urgently, and she would fit me in somewhere.

This is the problem though. Her reception staff seem to think ‘urgent’ means write it on a bit of paper, leave it on your desk overnight, throw a few things on top of it, and find it again six days later and then pass it onto the doctor.

But I assured her that I would call ‘urgently’.

I also told her that I had seen my GP, and she could call him for his opinion. Because the swelling was so pronounced, I wanted him to see it, to get his opinion.  She asked me what he had said. I told her he said it was a very obvious and nasty rheumatoid flare up.

She just said “Hmmmmm.”

And still, I don’t think she thinks so. Despite photographs that are clearly my hands and my feet looking pretty puffed up and gross, it still didn’t seem like she agreed with the rheumatoid flare up idea.

I have no idea why. I think she has some other theory that she is not ready to share.

I thought she would be rejoicing at the pictures of my feet.  I thought she would be getting out her prescription pad and applying for Actemra, because it takes at least 4 weeks for a new biological to be approved.  I thought the photos would be enough to get her head back into ‘This IS rheumatoid’ mode and she’d be a bit more excited.

Apparently not.

She did say that she now had an ultrasound machine in her rooms, and that when I came in she would examine my joints with ultrasound, to look for swelling.  THAT would be proof of synovitis and inflammatory arthritis for her.

So today is day 3 of 10mg of prednisone, and I am flagging now.  The prednisone headache has hit hard.  I had a few good hours this morning, but since lunchtime I’ve been couch blob.  Everything hurts too much to even consider gym.  I’m using my wheelchair around the house, it’s easier than walking.  Hard on my shoulder though.  My brain is fuzzy and I can’t organise my thoughts. Thank the gods for my smartphone, and reminder apps, because my memory is moosh.  It’s more than fatigue, its confusion and exhaustion. It takes a great effort to focus on anything, and I just want to sleep, but I have a GP appointment for more pain meds in an hour.  I have gone through this scripts worth too quickly, but considering the fast prednisone taper, I’m sure he’ll understand. He DID see my ankles last week, and he knows what my rheumatologist’s plan is, and I don’t think he agrees with it.

I’m struggling to eat now, and when I do eat, I feel nauseous.  I have a few meals in the freezer still, so we’re Ok for a day or two.  I hope I’ll continue to have two or three good hours in the morning, but life is down to grit your teeth and bear it.

I have some bloodwork to get done for my Immunologist, and I see her on the 20th of February. And unless I become the Michellin Man again, I see my rheumatologist on the 22nd of February, so she can run whatever tests she deems necessary.

I know my Immunologist is looking for some very rare myeloproliferative eosinophilic diseases, I can tell what she’s looking for by the bloodwork she’s ordered.  That, and she’s already told me that she wants me to have a bone marrow biopsy.  Not particularly looking forward to that, but at this point, I just want answers and treatment.  Looking at the signs and symptoms, her theory is possible.  I’m hoping she’s wrong, however.

When I see my rheumatologist it will be at least another week for her to run her tests.  And then maybe she’ll allow me to up my prednisone and/or apply for another biological.  Or something!

In the meantime, I’ll be mostly here on the couch, waiting for the time to go by…

6 COMMENTS

  1. I just do not understand why she is so loathed to admit that this is RA. Classic RA swelling & pain.
    I don’t swell over-much, not on a regular basis, usually only if I go into proper full on flare mode and then it’s usually only in my fingers, wrists and knees. My rheumy knows that is my RA normal, likewise my labs don’t always trigger, so why is your rheumy so desperate for text book results when we all know that there is no real text book when it comes to this disease? And if she’d wanted to see the swelling in person it is her job to make sure she is free to see you when that happens not expect you to struggle to get seen when you’re in that kind of state of feeling.

    • I don’t understand it either Gillian. But I think she has an idea in her head, and she just can’t shake it. But I am seeing a new rheumy next week! Start from scratch with someone new – exactly what I need. I will be down to 7.5mg of prednisone and hopefully this new guy won’t be so obsessed with swelling and lab work. Fingers crossed!!! Only one week to wait and in the meantime I’ll put together a nice, concise history and gather my records 🙂

  2. Love, its time to consider a new rheumy if you can. It seems she’s very unsure of her own opinions on your condition. You have proof, you have pictures, and your GP can back it up. If that doesn’t get her back on your side about this, then I’d be skeptical about anything from her in the future, but that’s just me. I’m amazed you’ve tolerated it this long. She’s dragging her feet at your expense, meanwhile, you are hurting. She’s spending too much time toggling back and forth, too indecisive, and you are suffering for it. I hope you get this worked out very soon. **gentle hugs**

    • The good news is I’ve just got an appointment with a new rheumy. New to town, and the appointment is next week!!! The reason I haven’t seen anyone else, is because there hasn’t been any other rheumy to see. So this is great! Start over with fresh eyes. Thank you Melissa, and you are absolutely right about all of that. Seeing a new rheumy is exactly what I need. I’m very hopeful. Best to you x

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