Hello ,I have two questions that I would like to ask .
1)Does anyone else have tingling and numbness in their hands?
For a few months now my fingers start to feel strange like normal pins and needles then my fingers and hands get puffy, numb and quite painful .The effect can last for a few hours . It mainly comes on when my hands are raised i.e.whilst driving ,knitting or holding a book up.Recently I have been waking up with it.
One Doctor I saw said it could be a dietary deficiency and if not she would order neurological tests as it didn't seem like a trapped nerve,but the results came back normal.
2) The Doctor today said it could be the steroids so she wants me to change my tapering plan .I am on 7mgs and was quite happy following advice from here to taper slowly.I was reducing by .5 mg monthly.Now I am to reduce by 1mg fortnightly over the next month to get to 5mgs .I am worried it will be too quick at this level.I will try but I wondered what this wonderful support group thought.Does it seem too fast to you?
Thank you.
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Dewdrop456
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Hi Dewdrop456, Yes, I do!!! Please know my fingertip (especially around the nails) have been really dry, rough, sore and cracked all winter... The GP gave me a prescription cream that seems to help, until it doesn't.
About 8-10 weeks ago I started noticing my fingertip were tingling and numb (but more alarming, so were my toes and feet and they always feel ice cold {when they are warm to the touch} and totally numb) I spoke to Rheumy about both and she is checking for Peripheral neuropathy. She was much more interested in my feet than hands... (?)
If you Google "finger numbness and prednisolone," you get a lot of complaints.
Thank you for replying.My feet are fine .I hope that your test results are good.I will Google.Perhaps my Doctor is right and it's the steroids. Worried about the sudden reduction having resolved to go slowly with the tapering.But it's worth a try I suppose.
P.S. I love your posts. I think we all feel sorry for your suffering so those parts are sad to read but somehow you manage to entertain us so well. Please hang in there ,I for one am hoping for things to go well for you. I feel a certain connection to you as I know Brighton well.
Q2. Doubt if it entirely caused by the steroids at 7mg, higher doses maybe. Depending on how you’ve been on 7mg, and, other than what you’ve mentioned, I guess you’re okay. Personally I think it’s too quick, and a bit pointless really. All that likely to happen is to cause you problems by a sudden quick reduction. But if that’s what the lady wants!
Look up previous posts, I’m sure you get some suggestions of how to help.
Just keep a diary, so if things go awry you can challenge her thought process.
Could be Magnesium because I am prone to cramps in my legs at night.I did have a blood test last week for dietitary deficiencies which were at OK levels apparently but I don't know if Magnesium was looked at.I will have to check.Good idea thank you.
I get tingling feet, they look bluish too, which I put down to skin bruising, some days worse than others....like mamic1 they are always cold, as are my hands....
Wouldn`t drop that quick if it was me.....good luck.
I really don't want to but also don't want the Doctor to think that I am throwing her advice aside. She is very kind and patient.
I might ask her if I can carry on dropping by the . 5mgs but over 2weeks and not 4 and see how that goes. The withdrawal symptoms complicate trying to assess how you are getting on after a reduction I find.
With tapering the steroids: I was on pred for 9 months, started on 15mg which instantly took away all PMR symptoms. I came down by 2.5 reduction every 8 weeks until 6mg. Then I came down 1mg every 8 weeks. I saw a different doctor when I was on 3mg and he said 2-3 weeks on each dose is enough, so I went for it and dropped through 2mg and 1mg then ended. That was five weeks ago. I have had to take occasional ibuprofen for hip pain - maybe four or five times - but that's it. I am hoping that will wear off, from reading this forum? Getting out of bed still hurts a bit!
This could cause confusion!, I’ve no rights on Dorset or Lady but I’ve had it for nearly six years and people know it, and as you’ve only just joined it’s perhaps a bit too similar and maybe you’d like to reconsider your profile name.
I thought, now I know the pred has got to me....DL, is already off pred and had GCA....but had to read on.....I don`t need more confusion......not with pred head!
I did a double-take, too, because I am following 'DorsetLady's taper plan' and that wasn't it! With all due respect, I second the suggestion to have an alternative name....
I know what you meant. I was just saying it would be difficult for me to change, with number of followers, post and replies already on system.
I’m wondering whether it was a glitch in the system allowing an almost identical name to be registered because there seem to have been other problems highlighted today.
Sure it will be sorted in due course. Meanwhile I’ll continue to witter on regardless!
Sorry to hear you are still suffering, we have all been there or still there so plenty of sympathy for you here. I am also a newbe of 6 weeks and you will find advice, sympathy and humour to help us along.
I was also confused by your post as Dorset Lady is a pillar of this site, and someone whose good advice we respect, check her out you will see what I mean.So perhaps change your n.d.p to avoid confusion. View her taper plan on list at steroid taper.azurewebsites.net.
I will look out for the oranges though. Good luck, hope you are feeling better today with the sunshine.
I have numbness in my left foot I presumed it was the polymyalgia as it travels around my body, I also have red socks around the bottom half of my legs, my nurse said its again part and parcel, anyone agree with this diagnosis ?
Not something I have come across before - but what do you mean by red socks?
Me to. Tingling fingers & toes sometimes. Toes feel numb internally but are still sensitive to touching! Have facial cheek & nose tingling also occasionally. Now diabetic with the pred. which may contribute.
Sorry you are having to cope with this.So far my toes are fine ,something to look forward to perhaps?I have noticed at night time sometimes my cheeks have a healthy redness on them ,unlike in the daytime.Thats odd too isn't it?Good luck and best wishes.
Hi Dewdrop. The fingertips on both my hands often feel swollen, they don't so much tingle but do feel a bit numb. This has been going on for quite some time, I believe it to be nerve related. I have certainly had it far longer than I've been taking Pred. Hope you get a reduction plan sorted soon that works for you (That being the key!) Kind regards, Mike
Thank you Mike, I don't feel that it is the Pred.I will try the quick reduction plan to humour my Doctor but I feel it is nerve related too.Who has time for all this PMR stuff? It's getting in the way ! (Am typing this with a complete tell numb finger!)
Hello Dewdrop,l have had numbness like Pepperdoggie in my hands ,feet and face,this was before l had PMR,it was a lot less noticeable when l was on the higher dose of preds but has returned now that l have tapered down to 3 mgs. I was referred to a specialist because of the problem about eight years ago and had an MRI scan on my neck but nothing wrong there,l just do not know the reason for it,best wishes,Patricia .
Hello Patricia, that is the trouble the PMR and Pred.,it complicates diagnosis.We can develop other things after all .Well I hope you find a solution soon.best wishes,Julia
Hi Dewdrop, tingling and numbness in your hands maybe a sign of high blood sugar. Have you had your blood sugar tested recently? Good luck think positively. ☺️
Hello,well that would just be the icing on the cake!! Had loads of blood tests but don't know if they tested for sugar.I've started to wake up with this now.Would my sugar be high then?Extremely strict with my diet .
Better check I suppose .This PMR lark is very time consuming ! Thanks and good luck to you too.
Who knows?Not me ,its just my body after all,one that has decided to act all weird on me.
I will try my Doctors idea and see if reducing the Pred. down will help it.Its interesting to hear that you think it could be the steroids that's two of you so I am out numbered. Worth a try as its getting worse each day.
yesterday was my first Pred free day since the doctor put me on them. Instead, I am taking NAPROXEN and I have to say that yesterday was a relatively good day, if you ignore a few PRED withdrawal symptoms. Obviously, we are all very different in our reaction/tolerance to any medication. I hope you manage to get some relief soon.
I too have tingling hands and feet. Worse in cold weather for me as I also suffer from raynaud. My hands get very dry too. But I put that down too lots of cleaning etc. Part of my job.
The other week my big toe hurt and my foot swelled up. They checked it out but bloods were normal and swelling went down after a few days.
Very strange this PMR!!
We do tend to blame the steroids for a lot of things but we need to remember they help give us some kind of life again, so we need to keep taking them in the right dose . X
Thanks Carole,(my little sister used to call me Dewdrop,without the numbers of course!)
Sorry that you have had these things .It is all very strange and annoying too quite honestly ! I wear gloves for cleaning and have been using Atrixo hand cream for decades throughout the day and at bedtime ,it's wonderful.I expect you have a favourite too.
I have accepted the necessary of the steroids that's why I feel nervous about coming off of my cautious tapering plan.I will give it a go. My fingers are numb now whilst typing this so it will be worth a try.
All my fingers and thumb ,my hand and my lower arm on my right side .I have started to wake up with it and it progresses to pain that can last for a few hours now I can't shake it out like with normal pins and needles.My left hand fingers get the feeling now and again but not in my hand or arm.
Any ideas?I will try the Doctor's reduction plan but with caution and reluctance .Thank you.
No ,she thinks it could be a reaction to the Prednisone, so she wants me to try a quick taper from 7 to 5. I was happy and resigned to a slow taper.I don't think it is due to the Pred as I'm sure this started gradually before this PMR nightmare started.
I will suggest it next month if I get to 5 mgs. It's actual pain mostly now so something is going on.Thank you
She is a good Doctor but I don't think PMR is her thing. No excuse because there is information available.If I do have an ultrasound I'll let you know.Someone suggested Diebetes ,now that really would be the icing on the cake.
This is like a full time job for you!
You are very generous with your time and it's wonderful that you help us all so patiently going over the same things with the new reluctant members.And supporting the rest of us as different things crop up.
Just occurred to me - do you have swelling of your hands? Though it does seem strange it is one-sided. And that is what makes me feel sceptical it is the pred...
Some times my left hand joins in but not so badly or for so long.
Also the fingers only puff up a bit ,it's the numbness that's annoying and it's getting more painful at times and traveling to my lower arm.My hand is only affected across the finger end.Its not a constant thing either but definitely getting more frequent and worse.So that might fit in with the ebbs and flows of the medicine I suppose.
Could it actually be my Adrenal glands coming to life?
I was wondering more about RS3PE syndrome - which is found in/alongside PMR and which responds to moderate doses of pred. It causes swollen fingers and oedema and can spread up the arm, as far as the upper arm very occasionally.
Hmmmmm,another possibility .My fingers are not very swollen ,it's more the numbness and pain which is spreading upwards but I will bear it in mind and make a note. Thank you
I don’t have numbness but I do have stiffness especially in the morning in my hands & wrists. I also have pain in my joints in my fingers & wrists & I can’t make a fist I can only close my hands so much. Sometimes I get what feels like muscle spasms in my hands & they feel like they want to fold in half left to right NOT from my wrist to my finger tips. I’m not sure if it’s from the PMR or something associated w/ it.
Sorry that you are having to experience this.Its so frustrating not knowing what these things are,so we can't really do anything about them. I have to try to drop my steroid dose quicker than I would have liked to do ,to test the doctor's theory .I don't think it's connected but what do I know!!
These problems started when the PMR hit me & well b4 I started taking prednisone. I was struck w/ PMR last July but wasn’t diagnosed until Oct. I had went to an Orthopedic surgeon because they thought it was carpal tunnel but it wasn’t that. Was tested for arthritis wasn’t that & They thought it might be tendinitis not sure about that. I’m just hoping when the PMR gets bored w/ me & leaves one day it takes it w/ him for company....
Actually,says me replying to myself! perhaps it is the Adrenal glands kicking in .It makes perfect sense, after all my body has turned against me and now my glands are kicking me.
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