Hands Up if you have experienced this too!?

Hands Up if you have experienced this too!?

Hi all,

I was wondering if anyone else had this issue, since reducing from 60mg to 10mg and back to 15mg I am feeling more human this week and even managed to go to the shops without coming home for a lie down!

However I am experiencing the same symptoms as before the steroids / diagnosis (not yet confirmed) which are really weak and lack of control over my hands, I am constantly dropping things and not able to pick them back up..fine motor skills are out the window! I also have swelling again in my hands in the morning and constantly below my fingers (see pic)

Anyone else had this?? I am trying to get a concise list of all my symptoms now I know what was and wasn't there pre Pred, before I see the consultant again on the 10th...CT is now booked for the 5th so finally feel like I'm getting nearer to a diagnosis - of sorts!

Tanya x

18 Replies

  • Does any of this sound familar?


    Your fingers don't seem to be swollen though?

  • No, symptoms not consistent with carpal tunnel..fingers feel sausage like and stiff first thing. I can't even blame it on the Pred as this was happening before I even had any...been researching and apparently it's not uncommon to have synovitis in the hands with PMR..if that's what I have of course lol x

  • Do take a photo of your fingers if you can. Sausage fingers are typical of a couple of inflammatory arthritides which are sometimes easy to confuse with PMR.

    I had synovitis in my hands - but they weren't swollen.

  • Yes not sure fingers are that swollen but they feel 'sausage like' first thing like they are puffy. One of the reasons Rod Hughes was thinking RA...although they have never been hot or particularly painful, my hands aches like my feet do on repetitive actions.

    Although my hands are nothing like as puffy as my face was a month ago, I should post a pic, its actually comical! My fat distribution on my face and body is really hard too...maybe fluid? Can you take water tablets to counteract this? Sorry to badger you with questions but you are our resident Guru! ❤️

  • It's either fat OR it is fluid - and face and midriff is usually fat. You have to be careful with water tablets when on pred - only potassium-sparing ones should be used and that with care. Pred makes you lose potassium as well and it is very easy to go too low which isn't good for muscles including the heart.

  • Oops said elsewhere by accident. Yes very familiar. Took a picture of my hands the same. Others can't see swollenezz very well. But they are tight and have limited sausage movement especially during humid weather. This bout brought trigger finger back for me. Convinced rheum and nurse/friend think it is RA. Flits all over. The lovely idea that once you have one autoimmune disease then more with follow.....great so diabetes fibro hypothyroidism and pmr not quite enough......my causative theory....chernobyl

  • blimey you have hit the jackpot! I am very interested to see what the outcome of my appointment is, so far I've had about 5 diagnosis from the medical profession...you're a bit of a mystery aren't you, seems to be the stock response!! I think my symptoms fit with PMR/GCA but with a bit of RA thrown in for good measure...

  • Yes I will be interested too. I had similar fall with a dog involved. Hope ankle better

  • Yes much better thanks, I did both in the end but they seem to be a lot more stable now...think it must be the lower dose of Pred...

  • Hi Trixiechamp, isn't there something called sausage fingers? Has anyone mentioned this? I believe it is a form psoriatic arthritis, it has got a name beginning with 'd'.

  • Dactylitis. I'd mentioned it earlier.

  • Sorry I must have missed it.

  • please excuse me for saying this, but those familiar hands look like Rheumatoid Arthritis to me. Have you been assessed for RA ?

  • Yes, one consultant thinks RA, another thinks PMR...waiting to go back on the 10th for bloods, X-rays and CT results...

  • I am down to 1mg pred a day about a couple of months ago started with pain in the p alm of the hand at night followed by swollen wrist/thumb, followed a few weeks later with a sausage middle finger on the other hand and other signs of joint activity in the last joint of most fingers I have also experienced dropping things. My GP referred me asap to the rheumy and I was seen by the specialist nurse who consulted with the rheumy there and the result was an injection in the backside as I had expressed a horror of upping the oral pred having spent so long taperiing down. She said random events like this sometimes went along with pred reduction and if it gets worse after 6-8 weeks we shall have to search for other possibilities

    Interestingly, a few months ago when my piriformis syndrome reared its ugly head a few days before a long awaited trip to China, I was told off by a nurse after being told I could come in for an injection as they had a cancellation and when I arrived she said the nurses could not do that injection. This despite it being in my notes that I can call the helpline if the pain in my hip got to bad with view to having an injection. According to her (a right snotty nosed article) I should restrict any call on the rheumy to PMR matters. I had cancelled my appointment with a private physio to be able to attend the hospital. As if we hadn't got enough to put up with. However, the most recent nurse was lovely.

  • I developed these same symptoms after I had been off pred for a number of weeks and the hospital has diagnosed me with fybromyalgia as well as PMR. It started happening in my feet too and pins and needles sensation in both

  • They didn't consider it might be a return of the PMR? Which is far more likely...

  • No. They actually stated I have both. The hand and foot issues are intermittent and I also developed burning sensations, as though holding my hands in burning candles but mainly in the left hand and not much in the right. It wakes me during the night. I did try going back on pred for a week before being sent to hospital, but it did not relieve it at all, where normally after a couple of days the PMR dies down.

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