Not a flare, but RA of the hands

[HelenDaisy]

I've had PMR since March 2019, managed with Prednisone and Leflunamide. After a slow taper to 3.mg, my hands started swelling last August and were so stiff and painful that I could hardly use them. As I have mild carpal tunnel syndrome, I contacted my hand surgeon at Kingston hospital and got an appointment in November. He took one look and said: that's inflammation, not CTS. He suggested it was a PMR flare, and I had 3 weeks on 9mg prednisone (which worked well) before a slow taper again.

I had my regular 6-month follow-up with my rheumatologist last week. She said it was more likely to be yet another inflammatory condition: Rheumatoid Arthritis. I've had lots of osteoarthritis (shoulder decompressions, 2 knee replacements, spinal decompression....) but this is a new one for me. Her suggestion was to keep a VERY slow taper, and if it happened again to contact her and they would double my leflunomide to 20mg, keeping the pred. at the same dose.

My normal-sized fingers are crossed that I don't have that again, it is most upsetting and unpleasant.

[jinasc]

I know this will sound odd, but methotextrate is extremely useful in the treatment of Rheumatoid Arthritis.

Perhaps a chat with the GP and see if you can switch from leflunomide.

[HelenDaisy in reply to jinasc]

I have raised LFT levels in my liver blood results, and Leflunamide is considered kinder to my liver than MXT.

[PMRpro Ambassador in reply to jinasc]

Leflunomide is also used in RA.

[DorsetLady PMRGCAuk volunteer]

As jinasc says MTX is widely used for RA, but as you are already on leflunomide, makes sense to increase that initially. But you do have options.

[PMRpro Ambassador]

Why immediately assume it is RA? Some of them have one-track minds!

[HelenDaisy in reply to PMRpro]

I had no other symptoms: no fatigue, no other pain or stiffness. Worse in my R hand than left. The swelling was awful, I didn't recognise my hands! My assumption was a PMR flare, but she didn't think so. If it happens again I'll camp outside her office so she can see me!

[PMRpro Ambassador in reply to HelenDaisy]

Did you take photos? RS3PE syndrome is a PMR-related possibility as well.

[HelenDaisy in reply to PMRpro]

Yikes! Never heard of that! Sadly no photos.

[HelenDaisy in reply to PMRpro]

I've looked at Dr Google's photos: mine were very similar.

[Amstel]

I had a similar problem just over 2 years ago. I'd been reducing the prednisolone and had got down to 5mg when my right hand started swelling and became very painful. This coincided with a PMR flare up which was so unbearable that I ended up in A&E. They pumped me full of Pred and painkillers, and long story short, it was eventually discovered I'd got inflammatory arthritis in my hand and was prescribed methotrexate. This seems generally to be keeping my hand pain free with the swelling gone. I've been on prednisolone since 2016 and am now down to 4mg but the latest reduction is causing me problems so I have an appointment with rheumatologist next week.

[HelenDaisy in reply to Amstel]

That's very interesting. I'm glad it resolved for you. It's fine for me now but I'll be more aware of it as I taper.

[Hildalew]

I'm with PMRPro on this one!

Hugely swollen and painful hands were a big feature of my first experience of PMR but it was only about 3 years later, when I was well on the way on my taper of Pred, and seeing the Rheumy about 6-monthly that he said something about my being a standard case of PMR, 'apart from one thing'.

When I asked what that was, he explained it was the effect on my hands - apparently an unusual 'variation' on the standard back, ribs, arms etc (I may have left something out there because I can't remember every thing that people have mentioned).

(I had thought that my rheumy was a straight-down-the-line text-book-following man -(partly because his prime specialism is bones - as he told me during my first visit to him, Clearly I underrated him.)

A few months ago, when I was happily tiptoeing around 3mg I think, I had a particularly high carbohydrate/inflammatory food binge and had the devil of a flare in my hands - nowhere else. It responded well to increased Pred for a short while, and, so far, has not happened again.

When I posted a plea for advice from anybody who had suffered such a thing, PMRPro's reply included the information that PMR in hands and feet is often regarded as a rarity and there is little, if any, research material published about it.

Let's hope that, whatever it is you have, it responds well to the treatment and you are free of the symptoms soon.

[HelenDaisy in reply to Hildalew]

Thanks for your reply. It seems it may be uncommon but not unknown. Thank goodness for this site!

[readingbooks in reply to HelenDaisy]

Certainly not unknown. Both my hands and fingers were swollen and painful along with other more common symptoms of what was eventually diagnosed as PMR. This was in 2017. My, excellent , Rheumy took her time before making the diagnosis in case it was LORA.