Another Knee.

[Roltuba]

Hello, male (yes!) aged 73 with typical PMR since Jan 2015. (Also frustrated Brass Band player) Never managed to get below 6mg Prednisolone, that keeps me OK mostly, only side effect is very thin skin. I have a knee like other posts, swells up and is extremely painful, affecting life badly - Paracetamol doesn't help. I've had it drained, up to 150ml, and steroid injected 4 times now, usually with miraculous improvement for a couple of months until it swells up again. I've been very lucky to get it done twice during Covid, last time the very last day before Outpatients shut down. As far as I know have had no tests for Gout.

Rheumy is trying me on Sulfasalazine (I tried Methotrexate a couple of years ago but felt very queasy for the 3 months, though blood tests OK, so I gave up. ) She is calling it "an Inflammatory arthritis probably triggered by the PMR". Sulf is taken in increasing dose over 4 weeks, with fortnightly blood test. First time around, first time I took the full dose I was horribly ill the day after, temperature and both ends of gut! This was also the day after my Covid jab, though the gut was uncomfortable before it, so I think I had a mixture of side effects. Second time around I am going to increase the Sulf more gradually, reverse of DSNS. I was also advised to increase Pred to 10mg for a month and am now coming down to 6 again. So waiting to see what happens now. Should say I normally have guts like steel while OH suffers on foreign trips! I do wonder which is worst - Sufasalazine or more Pred.

[PMRpro Ambassador]

The rheumy I saw after I had worked out what I probably had wouldn't accept PMR as a diagnosis despite textbook symptoms except blood markers and a 6 hour response to 15mg pred. He had all sorts of theories, each ruled out by blood tests or imaging. He wouldn't give up though and announced it was an inflammatory arthritis (still no signs of that 11 years on) and wanted to use sulphasalazine. Luckily (as I saw it) I was about to move here to Italy so it couldn't be started as it required a specialist to monitor it. I wasn't amused - "keep out of the sun". Easier said than done here, would have been fine in Durham I suppose

[Roltuba in reply to PMRpro]

The Versus Arthritis leaflet about Sulfasalazine says nothing about avoiding sunlight, the leaflet that comes with the pills mentions it only in the section about "if you get any of the following serious side effects stop taking it and tell doctor immediately etc"..... under "an allergic reaction, which may cause itching, rashes, swelling of the face..... skin sensitivity to sunlight......." and so on. No advice to avoid sunlight (or alcohol, just keep it down to normal advised limit). So hopefully if we ever get a summer I can carry on as normal - chance would be a fine thing. I imagine an allergic reaction would happen immediately. Sigh.

[PMRpro Ambassador in reply to Roltuba]

Lot of mention on US sites - maybe it depends on the latitude and weather!

[jinasc]

Are you taking Calichew?

[Roltuba in reply to jinasc]

I take Adcal twice a day.

[jinasc in reply to Roltuba]

Ask your medics to check your calcium levels, too much calcium can cause pseudo gout and grit in your gallbladder. Which I found out to my cost.

[Lochy]

Your story is very similar to mine. My right knee swells becomes very painful and debilitating. PMR since January 2016 knees fine for first two years. Didn’t taper very easily even using the DSNS method. Lowest I’ve ever got to is 6mg but not pain free. Very hard to establish steroid withdrawal or flare. My liver function tests have always been very high as are my inflammatory markers. Refused methotrexate as a result. Started hydroxychloroquine two years ago. No idea if it really makes a difference.

My rheumatologist has started me on sulfasalazine three weeks ago. She believes I have more of an inflammatory arthritis. I have no idea but I know when my knee starts to flare I really struggle and want anything to make it ok. I had fluid removed and another steroid injection three weeks ago so all good at moment but I dread it happening again. I’ve heard of others having a horrible reaction to sulfasalazine and I don’t really know if it’s a worthwhile drug to take or how it actually works.

I’m currently sitting at 8 mg of prednisolone and feeling ok.

Frustratingly it’s been 5 years now and it’s not getting any easier to deal with. I keep dreaming that it will go into remission one day but I know from everything I read here it happens for some but not all.

As my rheumatologist keeps telling me uncontrolled inflammation is not good hence Trying the other drugs as opposed to being on a higher dose of steroids. No idea what’s worse.

I’m off to join a zoom meeting on steroid reduction with the Scottish branch of the charity so will see how everyone else is getting on.

I’ll let you know how my sulfasalazine journey goes.