Help!

[Stifffingers]

Feel like I’ve hit rock bottom again last few weeks. After eventually tapering off of Pred June last year, I believe I told you lovely people I started getting issues with my fingers , then wrists. So pretty evident the Pred was masking these pains ( well I am assuming that). I eventually returned to Pred , at first a couple a day, up until now , where , I do 2 m in the morning & 2 at night.

I’m waking up with sausage fingers. I cannot bend my fingers forward, only enough to form a claw.

I am in constant pain. After the Pred dosage ( several hours) I have an improvement, but still unable to make a fist. Yesterday I took a 5 m tab , in desperation. I’m tempted to take 10 mg this morning as I am so low. The only other symptom I have ( if it is a symptom? ) are burning biceps, which I can comfortably live with. Also I have heavy legs. Again not an issue.

I can just about raise my arms above my head, but I was never flexible.!

Do I blast myself with a higher dosage? When I do eventually get a telephone consultation from my Rhumy, it’s always the same. We need to get you off the Pred. Your hands are nothing to do with it?

Well people I’m in agony , and very low……I,m sure there must be some of you who have experienced same? ……Help, please.

[PMRpro Ambassador]

There isn't a lot of point taking not enough pred, you have downsides with no upsides to balance them. Have you tried taking more? Properly more I mean. Just to see what happens.

Sausage fingers are a common sign of some inflammatory arthritides as well as other a/i disorders. They may not be a sign of PMR - but they ARE associated with things that your rheumy should be taking an interest in as possible causes if it isn't PMR.

my.clevelandclinic.org/heal...

[Stifffingers in reply to PMRpro]

Thank you for your reply. “More properly”?

By that what would constitute more?

[PMRpro Ambassador in reply to Stifffingers]

At least 10mg, possibly more if that doesn't work to get an idea of how much inflammation is there and whether it is pred-responsive. The rheumy won't like it but it does given you grounds for demanding he investigates further.

[Stifffingers in reply to PMRpro]

does this sound like a flare to you ?

[PMRpro Ambassador in reply to Stifffingers]

It could be - but it could also be an inflammatory arthritis developing, Either way, he needs to look at it and not simply say it isn't ("just") PMR.

[Stifffingers in reply to PMRpro]

from your experience, what does one take to reduce the inflammation then ?

[PMRpro Ambassador in reply to Stifffingers]

Depends what the correct diagnosis is - horses for courses. Inflammatory arthritis varies in the underlying cause so there are some medications that are better than others. But they usually start with a DMARD of some sort if antiinflammatories like Naproxen or ibuprofen don't work and in some they may use a biologic. First step - diagnosis.

[Stifffingers in reply to PMRpro]

I recently had an op for Prostate cancer. Had to have a bone scan . Showed I had OA in my fingers .However that wouldn’t account for the biceps burning would it?,

[PMRpro Ambassador in reply to Stifffingers]

They're muscle problems, OA is bones.

[Stifffingers in reply to PMRpro]

I Appreciate that. However when I first got PMR, that was one area that became part of the flare, along with my wrists , shoulders & right groin.

Hence my question?

[PMRpro Ambassador in reply to Stifffingers]

And hence my reply - bicep pain could very well be PMR, it won't be due to OA.

[Stifffingers in reply to Stifffingers]

one other question… you suggested a higher dosage. What amount& for how long would you suggest.

Thank you for your help .

Regards

[PMRpro Ambassador in reply to Stifffingers]

I already suggested 10mg to see if it is enough, maybe more if it isn't and you would probably need a week or so before you could say it doesn't - but is just a suggestion, we can't tell you what dose to take.

[Stifffingers in reply to PMRpro]

apologies that you did. I appreciate your assistance.

[capo100 in reply to PMRpro]

Luckily for me my fingers were only stiff before Pred. For a few weeks I had to bend them manually for about half an hour before I could even dress.... I wish you luck with it........ Leo

[Stifffingers in reply to capo100]

thank you Leo

[capo100 in reply to Stifffingers]

Take care

[agingfeminist]

So sorry you are having such a miserable set back. Have you tried painkillers ..ibuprofen and paracetomol seem to act synergistically. The ibuprofen is not recommended with pred. But if you separate them and take with lots of yogurt asa one off experiment. If painkillers help at all then you know it isn't pmr...good luck!

[Stifffingers in reply to agingfeminist]

bless ya . Thank you .

[Pinkpepper]

I've been off pred for 3 months, been OK but like you stiff, sausage fingers. Dr told me its OA

[Stifffingers in reply to Pinkpepper]

Thank you for your reply. I did as PMR pro suggested, and took 2x 5 mg Pred. Feeling much better today. Can almost make fists.

Pain is so Dispiriting.

However I don’t want to be back on the high dosages again .

[Tahiri]

This may be a bit controversial, but I was at half an mg. of Pred when pain started in my joints , especially the fingers and toes. I know that I’ve got Quadroparesis but this was an abrupt worsening and I blame the Astra Zeneca vaccine. I actually fell and broke my leg as I couldn’t walk properly. The pain eventually went into my knees and, to a lesser extent my elbows. I now have a bleed behind one eye , which I thought was a flare, and increased the pred but an optician ruled a flare out, and I’ve to have a consultation and the clot removed with needles in the eye. My fingers have swollen too. I just read that the vaccine can cause joint problems, while we blame our inflammation for everything, instead of considering this angle. It’s most unpleasant but it is happening to some of us. Please consider this before increasing the Pred.Speak about this aspect to your Rheumy. I’m trying to reduce my Pred again, when increasing the dose ,, had, in fact, done nothing. Be guided by medical advice in my opinion. Best of luck for us both, Tahiri xx

[Stifffingers in reply to Tahiri]

wish you well

[rcm51]

I've been off pred for 2 months, hands shoulders and hip pain has been coming bach. Rhumy suggested Tylanol for the pain. It does help. Lately I've developed tiredness brain fog along with dizzyness and lack of energy to any of my many hobbies. I had similar reactions every time I would tapor. Just not a lasting. This has been going on for about two weeks now. I was positive GCA . High does for about a year seems to have taken care but the tapering has been exausting. Male 71yo hoping for the best.

[Stifffingers in reply to rcm51]

hmmm . Male 71 . Me too !!

Forgot about the brain fog . I’ve answered earlier. Took the plunge yesterday, went back onto a 10 mg dosage.Feel so much better today … best regards

[DorsetLady PMRGCAuk volunteer in reply to rcm51]

Tiredness, brain fog, dizziness etc are all signs of your adrenals stuttering -have a look at this -

healthunlocked.com/pmrgcauk...

.. and would say your GCA is still lurking -if so , a very small dose of Pred would probably be a better option than Tylenol . GCA can and does last a lot longer than many Rheumies acknowledge.

[Stifffingers in reply to DorsetLady]

thank you x

[rcm51 in reply to DorsetLady]

Thankyou. You and and the group have been very comforting and a great resourse for me thru the years

[Wizards]

I've been off prednisone since January 2023. At very low doses I started to develop trigger fingers in all my fingers. When I get this my fingers also swell and I'm in excruciating pain and I can't use my hands.I get cortisone shots which have helped for years but now not much. I do have osteoarthritis in them as well. Lately I've been refered to a hand clinic but it's taking months to get in. Real backlog in my city.

I've also been suffering with sciatica for months and get treatment 2x week.

Please see your rhumitologist and go forward from there.

[Stifffingers in reply to Wizards]

interesting. When I eventually tapered out, I too developed Trigger fingers , not in all like yourself, but at least 3 fingers. Then came the knuckle joint pains …OMG . 🥴.Hand clinic ? Interesting. I shall ask my Physio . Thankyou for replying.

[phebamom]

Have you also gained weight? the sausage fingers as well as the burning biceps could be from water retention . Have you tried a low sodium diet, i.e., 1200mg. per day max of sodium? Prednisone can cause water retention and some people are more sensitive to it than others. If you are an older adult, and you have kidney issues, (most older adults do) then your kidneys may be sensitive to both sodium and prednisone.