Pain & swelling in big toe.

[Zane1]

Here is a weird question. I have been of pred for about a year & everything going really well until the last few days. I reduced to 4 mil & my big toe is swollen & painful. Could there be any connection?

[PMRpro Ambassador]

Um - sorry, am I being dense: you have been off pred for a year, but you reduced to 4ml (of what) and your toe hurts?

[Zane1 in reply to PMRpro]

Oops, early here. I meant I have been on pred for about a year & am down to 4 mil & for the last 4 or 5 days by big toe is swollen & painful. No idea is any correlation. Just wondered.

[PMRpro Ambassador in reply to Zane1]

I had that sort of thing BEFORE PMR and the pred eventually made it disappear. I could only wear Birkenstocks for years! Needed very thick socks in winter...

Funny - it must be flavour of the month because a couple of others on another forum have been complaining of something similar.

Gout (or psuedogout) are also possibilities. Blood test for high uric acid would maybe answer the first, aspiration of the fluid from the toe joint would definitely decide if and which.

[Zane1 in reply to PMRpro]

Thanks, I googled gout this morning after a rather painful night. I don't think that's it. Certainly not diet. Maybe I should increase my pred a little. It just seems so strange. At least I am not the only one. If it continues I will ask rheumy for uric acid blood test. Good idea.

[PMRpro Ambassador in reply to Zane1]

Not sure that diet does actually have a lot to do with it - certainly not the alcohol and rich living story!

The other thing, psuedogout, is different crystals.

If it is just the top half - could it be the nail bed? Or is it definitely the joint?

[Zane1 in reply to PMRpro]

The only diet culprit could be red wine & I would be very reluctant to give that up. I think I'll up the pred just a little & see what happens. I have had joint replacement in my left ring finger & now need to do it in my right ring finger. So odd. I am so glad there are such good hand surgeons around these days. That's why I worry about the toe so much.

[thepainofit in reply to Zane1]

Hi, I have same in big toes when I have reduced too far. First time it happened I asked my gp for the uric acid test and it came back normal, so now make a note of all peculiar symptoms when it's time for me to try a reduction of pred. I am 10 years into my journey with PMR and can just lead a normal life (for me) at 10mg at the moment although been down to 5mg when I lived abroad in the winters.

[babssara in reply to PMRpro]

I think i know why this happens! It has just happened to me. I posted a reply, when I submitted it, it if read " since being "of" steroids, when it should have read "on". This happens a lot. I wonder if the site administer can explain why this happens. Babs x

[30048]

I think it could be gout. My doctor has me on gout medicine due to the prednisone. Your symptoms sound like that is what it could be.

[Zane1 in reply to 30048]

Thanks. What kind of medication is it? Saw on the internet take aspirin for gout. Who would think a big toe could be so painful? It's just the top upper half of the toe. It's always something as they say.

[30048]

It is allopurinol 100 mg. my Uris acid showed up in the high normal range so it was not out of the norm.

[SweetSue]

My big toe hurt really badly as one of my first PMR symptoms. The pain was strictly in the joint for me. I thought I had gout or something at first, but then it went away, only to return once in a while, and it still does. My doctor checked my uric acid and it was fine. I also get this nasty painful knot in my left calf, which we've zeroed down to myofascial pain syndrome. The myofascial therapist showed me that the muscle in my calf that hurts is connected to the big toe, which explains why when one flares up, the other usually does too.

[Zane1 in reply to SweetSue]

Interesting, my calf was tight as well, but I didn't relate the two. Good info, thanks.

[SweetSue in reply to Zane1]

I felt so crazy for so long with all these weird pains moving from place to place to place in my body before I got diagnosed. The next horrid pain that appeared after the calf and toe, was bilateral groin pain. It was such a searing, burning intense pain that I couldn't even stand to have clothing touch that area, and still no one knew what was wrong with me. Since I had never even heard of PMR at that point, I was so scared that something really bad was happening to me. My younger sister got MS at 17 yrs old, and passed away at 37, and I was really afraid I was getting it too. I was so relieved to find out that I "only" had PMR (although it didn't seem like "only" when I was at my worst!)

[Zane1 in reply to SweetSue]

Yes, I agree. If you have to have an autoimmune disorder PMR beats many of the other possibilities. My niece developed Lupus at a really young age & has been in a lot of pain pretty much her whole life. One thing I really like about my doctor is he listens to me, explains things to me, does lots of tests & is always willing to admit he might not be right about the diagnosis. Having this for about a year now I have started to realize how incredibly difficult it is to be 100% sure of anything.

[SweetSue in reply to Zane1]

I've been treated for a little over a year now too, but in hindsight I think I had it for about a year before that, but it was little things coming and going, that gradually progressed. It does seem like it something new and different every day doesn't it?

[Patricia157]

A number of years ago I was wrongly diagnosed with gout following a raised Uric acid test and was on the wrong medication for about two years. I then saw another doctor who diagnosed a slight hammer toe. He arranged for me to have a cortisone injection into the very base of the toe and it cured me.

A neighbour of mine says he gets bouts of gout by eating beef and so avoids that.

It seems you will need to keep an open mind about what is causing it until you find out why.

Good luck, I know how painful these things can be.

[Zane1 in reply to Patricia157]

Thanks, I hardly eat any meat so I can rule that out. Over the years I've had many cortisone shots, but never one in my toe. That's a good idea & will discuss with my rheumy. Always prefer a shot to more meds. Everyone has been so helpful. Yes, seems these days everything takes a lot of sleuthing.