weakness in hand

[Murphysauntie]

Hi I was wondering if anyone has experienced sudden loss of strength in their hands with PMR ?

In the past week I’ve had 2 incidences when I’ve lost strength in my left hand , this isn’t my dominant hand , once when I couldn’t hold a baking tray with a few chips on it which I had taken out of the oven , and the other just yesterday when I couldn’t pull my fork out of the hamburger I was eating . We were in a restaurant and I had to ask one of my friends to pull it out for me and to cut my lunch up . Both incidences surprised me and to be honest left me a little bit concerned. And feeling a bit teary .

I was wondering if anyone else had experienced this on their PMR journey ? If so do you know why this is happening ? Is this part of PMR Or is this something I should mention to my GP ?

I’m fit and well other than PMR , still pootling about the garden, walking the dog so this has completely kerfuddled me .

I was diagnosed with PMR in April 2024 . I am currently on 9mg pred per day for the last 8 weeks . As I have had a busy couple of weeks but I’ve rested when I’ve needed too and not done anything too excessive. I have been feeling a bit niggley stiff at times but not enough to think of as flair. I was due to reduce to 8 mg last week but have put it off due to the niggles . My plan is to reduce to 8.5 for four weeks from next Friday then 8mg after that . Does this sound like a cunning plan or should I hold out at 9 mg for a bit longer ?

Your thoughts and advice would be very much appreciated

[DorsetLady PMRGCAuk volunteer]

Hi,

It may connected to PMR, some do have issues with hands/wrists maybe have a look at this re carpal tunnel syndrome which often accompanies it

nhs.uk/conditions/carpal-tu...

Yes you should discuss with GP and maybe also request X-rays to check for osteoarthritis.

As for tapering, I’d stay put at 9mg for a little longer especially if you’ve got a few niggles.. and although you don’t think it’s a flare, just monitor things. And if necessary then follow the flare protocol as described here -

healthunlocked.com/pmrgcauk...

[Murphysauntie in reply to DorsetLady]

Thank you Dorset Lady I really appreciate your response . I will message my GP tomorrow as she has asked for regular updates and contact especially if I have any concerns , but is happy that I follow the advise and information that is available from you all .I have been lucky and have a GP who has been really supportive during my journey .

Thank you again

[DorsetLady PMRGCAuk volunteer in reply to Murphysauntie]

Good to hear you’ve got such a supportive GP.. and please let us know outcome.

[Murphysauntie in reply to DorsetLady]

Will do .

[PMRpro Ambassador]

I agree - it needs to be reported to your GP and I'd hang fire on a taper for the moment but switching to 1/2mg steps is a good idea.

[Murphysauntie]

thank you PMRpro

[Andos16]

Not sure if this same but I was diagnosed PMR 18 m ago. Carpal tunnel developed and had keyhole surgery 3m ago. Now I have a new rheumie (a good one) who believes I have RA not PMR and I've started methotrexate. Also waiting to see if reduction of inflammation improves my wrist and then I won't need surgery on my right hand. Which means I might not have needed it on my left one to start with.

[Murphysauntie in reply to Andos16]

Thank you Andos . It will be interesting to see what GP says as I was discharged from Rheumie clinic after 1 telephone appointment . 🤔

Thankfully for you it sounds as if you’ve a ‘good’un , you are on the right path for you

[NCStateLine]

Funny - I have similar issues. Was diagnosed Jan 2024 and currently at 3 mg. All going pretty well but I have had issues with hand strength / soreness for months. At suggestion of some of the experts here had my rheumy check for carpal tunnel and it is not that. Going in for a sonogram on my right hand on Wednesday. Hands feel like muscles are tired and particularly first thing in the AM feel pretty weak. I’ll report back when I hear if they see anything. I’ve slowed to dropping 0.5 mg per 6 weeks and that seems to be OK so far….

[AtopicGuy]

Sounds nerve-related, rather than muscle weakness.

[Body_bonkers]

I went as weak as a kitten but thankfully some strength came back on steroids. I still struggle to hold heavy dishes and cut tough food. I’ve also lost feeling in fingers on both hands and nerve testing showed I have mild impingement. Using computer mouse and touch pad is frustrating, Handling small objects or unscrewing things can send me into a rage too ! I stopped crafting for a while as it was getting so difficult but it really destresses me so perserveer. I asked the rheumatologist about it and was told it might be caused by fluid retention from steroid use but I’m sceptical to be honest. I’ve been battling flare for months now and hands have deteriotated again so sure there is a PMR link.

I usef to get so angry with myself - constantly dropping and breaking stuff and then being almost too stiff to pick it up off the floor. I focus more on what I’m doing now, use kitchen appliances and lanyards etc. but still feel useless at times. Afraid we just have to learn to adapt

[Murphysauntie in reply to Body_bonkers]

Thank you . Oh my ! From what you have said You are having a much tougher time of it than I am tbh . I do just ‘carry on’ my friends and family are now realising that when I ask for help I truly need it . Opening bottles , jars etc . Some days I struggle even with laces and yes I find fiddlythings even more fiddlier now . Yes and like you get very frustrated . I blame the steroids and ‘roid rage ‘ for this . You are right about preservering with hobbies I still craft and garden although I tend to do it in smaller sessions. It really helps with my mental health just to lose myself in something else . After 6 months I finally sat down again at a potters wheel and with the help of my potty teach I managed to throw a pot . It took a while but I did it . I got teary as for me it was a real achievement .

We will get there . For some of us our journey maybe longer than others , flares and all , but the support and knowledge of the lovely participants of this group encourages you and enables to keeping moving forward .