Hand pain/inflammation with PMR???: I was diagnosed... - PMRGCAuk

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Hand pain/inflammation with PMR???

Sparky99 profile image
20 Replies

I was diagnosed PMR 6 months ago. Typical shoulder hip symptoms. As I came down off the pred my right hand got inflamed. (Left hand also but much less severe).

Inflammation appears overnight. Hand is Stiff and doesn’t really function in the morning. Swollen most of the day. My shoulders and hips are fine now. But my hand is quite poor. I’m told PMR isn’t really “a hand thing”. Has anyone had hand related pain,swelling or discomfort particularly in the palm and soft tissue tendons? The hand started when I dropped from 7.5 pred to 5. Thanks

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Sparky99 profile image
Sparky99
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PMRpro profile image
PMRproAmbassador

Yes it can be a "hand thing" and there are plenty of references in the literature about RS3PE synrome being part of PMR, usually in the early stages as it too responds to moderate dose pred so disappears once the patient is started on pred. But it can reappear or manifest when the lower doses are reached. Leeds Uni did a study - and admit that yes, hands and feet can be affected in PMR. Sorry don't have a reference though. However, this

bpac.org.nz/bpj/2013/june/p...

Says "Symptoms, such as pain or stiffness in the joints of the hands and feet, are present in approximately half of people with polymyalgia rheumatica, ..."

Did you reduce from 7.5mg to 5mg in a single step? No wonder you are having problems - below 10mg even doctors and the guidelines say 1mg at a time! And to be attempting 5mg after only 6 months is very optimistic - the median time to get to 5mg is said to be 18 months (that's for half of patients to get there)

I had a lot of hand and foot pain with PMR but it was mostly fingers (tendonitis) and the back of my hands and wrists that were painful, Similar with feet - the instep was agonising when I stood and walked after sitting for a while.

Sparky99 profile image
Sparky99 in reply to PMRpro

You really are PMR pro!. Thanks for the quick reply. I did step down pretty quickly (relative to what you are saying) usually 2.5 mg steps. I would get some slight discomfort but it would pass in a few days so I couldn’t distinguish between pmr symptoms and the other feelings one gets from tapering. It was just all kind of crappy as you know.

I’ve been off pred for 6 weeks and NSAIDs help the hand but not materially so I stopped everything a few days ago. Hand is worse but being off all meds for the first time in 6 months feels better too. Based on how I’ve been feeling - I was going to tough it out for a few weeks before going back on the pred If things didn’t improve.

Very helpful to know that “hands” are a pred thing. Truly appreciative of your thoughts and input

PMRpro profile image
PMRproAmbassador in reply to Sparky99

No - hands are a PMR thing, not pred!

Sparky99 profile image
Sparky99 in reply to PMRpro

Yes. My bad typo. Thanks again

FLSurfing_Dad profile image
FLSurfing_Dad in reply to PMRpro

Thank you as well!! I’ve been going nuts every morning with my hands R>L stiffness. My last two fingers will actually lock up when I try to grip anything upon awakening. After 1.5 yrs of PMR, I’m finally down to 4mg / day with prednisone. I need my hands for work ( physio) so I stretch in the hot shower and move my hands , stretch my lower back and hips before I leave for work. Tylenol in the morning on my 1hr drive to work and at noon 800mg ibuprofen with lunch has worked well for me. I’m hoping to be at 3mg next month. Thank you again for the info on hands.

Paperroses profile image
Paperroses

yes, I have it in my hands now every morning stiff and painful, gets better latter in day , did not have it at the beginning ,only past 8 months , at 4.5 mg prednisone.

Sparky99 profile image
Sparky99 in reply to Paperroses

Thanks for sharing. And hope you are fully recovered soon

Mamamia21 profile image
Mamamia21

I've been on this journey for 6 years and my wrists have only been a problem for the last 6 months... seems that it likes to move around your body

Sparky99 profile image
Sparky99 in reply to Mamamia21

Wow. 6 years. Not much to say to that. Sorry. Super sympathetic

Artwatercolour profile image
Artwatercolour

Yes I have experienced that. I think you dropped too fast a jump

Sparky99 profile image
Sparky99 in reply to Artwatercolour

Seems to be consistent with what others have said.

Thanks!

Well Sparky we are on the sane dosage of Prednisone and it is miserable to even hold the cell phone for very long.

I need my hands to work, drive, and wipe if you know what I mean. Hands and forearms are the worst for me. Exhaustion is the second followed by shoulders, hips. It started with my lower extremities. Going on 14months for me

Got a new Rheumy, fired the last gal now have a smart pretty Jewess with plenty experience that abandoned the health alliances that severely restricted her ability to treat patients. She will cost me money insurance likely won’t cover.

I am hopeful she can keep me working until 62, I am 58. She thinks she can get me off prednisone in two years which is killing me. I am diabetic but not overweight. Never in my life would I imagine a big guy like I am would be as weak as a 5yr old child.

She spent 5 minutes just feeling my hands and she reviewed my files the weekend before she first seen me. Never had someone in my life pay such attention to my hands. Then she sent me to get bloodwork. I do not have arthritis but if I was a musician and played my guitar, I would starve to death. Fortunately I am an electrical design engineer but even computer work is miserable

PMRpro profile image
PMRproAmbassador in reply to

"She thinks she can get me off prednisone in two years which is killing me"

No guarantees there - a lot will claim it though! You are almost certainly already at too low a dose.

And ALL good rheumies look at hands at every appointment. Not all rheumies do mind ...

in reply to PMRpro

M8, we have butted heads before but not this time for sure. I believe you. She has me now on 7.5mg but my pharmacy had to order 2.5mg x 3. It’s been 4 days still not filled. I am taking my stash of 10mg a day and still feel about the same as 5mg

Only thing I noticed is maybe an improvement in level of exhaustion. Was able to walk a mile. 10mg for 4 days really did little. My blood sugars went up with appetite.

Precarious balancing act, too much prednisone, I struggle with sleepiness from high blood sugar

Too little and I am too miserable to work.

This mess is more complicated than electromagnetic design. I perfectly understand why Biblical translators translated Pharmakeia, Sorcery. It implies empirical methodology in the Hebrew and Greek

Trial and error practice. Each person reacts differently so I am hoping her significant experience expedites tuning my system

Golf-1 profile image
Golf-1

Hi Sparky, I have exactly the same problem with my right hand, it does not seem to be in the joints, and is particularly painful when I grip something. It only started when my GP dropped my Pred I mentioned it to him last week and am having more blood tests this week after which I hope he is going to do something about it.

Sparky99 profile image
Sparky99 in reply to Golf-1

Yes. My gp asked for blood work also. Getting it this week. In the mornings I can barely open the refrigerator. This whole process is emotionally draining for sure

MDT1 profile image
MDT1 in reply to Golf-1

Hi - this feed is very helpful. Golf-1 especially describes my hand pain but mine is not bad 1st thing, rather it gets worse as the day progresses, is this likely not PMR then? I am on 2.5/3 - alternating. Thanks all

Ronzy profile image
Ronzy

Yes my hands manly right one is extremely stiff in the morning. They will probably say it’s arthritis 😱 All my doctors say is your shoulder ok can you open the door 😡

It’s bloody frustrating this problem 🤬

Sparky99 profile image
Sparky99 in reply to Ronzy

Indeed. I’ve tried acupuncture but only once and will try again (may have helped not sure) and I’ve tried placing my bad hand (right one) in an ice bucket for a minute and then warm water for a minute and that seems to help. 5 minutes each time. 10 minutes total. Kind of a horrible exercise.

Today I purchased compression gloves on Amazon. They are fingerless and go up a little on the wrist. This has been the most helpful so far. I think it just assists the blood flow and my pain is mostly in my palm so anyway. I share because some of these things seem to be helping at least with hand pain.

paulst955 profile image
paulst955

Hello I've PMR for 10 years and hand problems for 2 years hand it feels like my hands are full of a million tiny bees bussing around inside my hands, much worse first thing in the morning. When it first started they where very swollen and stiff unable to make a fist as well but not now. Blood test did not show anything, doctors don't know what to do or show any sympathy,had lots of blood tests scans etc just living with it now.

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