This problem doesn’t directly affect me but my 96 Mother. She’s a very stoic woman who up until just before Christmas was very independent just suffering general aches and pains for that age and never complains. She started to get terrible head pains initially on the one side it progressed to the neck and shoulder so much so she could hardly move, not eating and wasn’t sleeping. After the neck problem she said her arms felt like she’d been digging the garden couldn’t lift them, then her hand swelled up and fingers on the hand got very painful. At this point she went see a nurse/ practitioner she suggested basic painkillers initially ibuprofen etc. My Brother took her back a week later and saw someone else who said it might be PMR and gave her prednisolone 30mg x 5 days. She perked up was eating better sleeping and walking stronger. After she ended them she went down hill again then started to get numb finger tips and couldn’t pick anything up along with the pain, Scheduled to go back to the nurse/ practitioner last Thursday from what I understand there wasn’t much said about what the problem of PMR again but put down to nerve/ inflammation through the body and the pain and finger numbness was a symptom of very low vitamin D and Iron and Folate levels so she’s now been put on Pregabalin for one week and up the dose in a week. Plus Vit D supplements folate and ferrous sulphate. She was told she couldn’t have any more steroids. I asked questions on the phone tonight, she slightly deaf not understanding the different drugs let along PMR so I asked things like have you pain in your legs, feet, stomach back the answer was no not really. Then I said so it’s your head, shoulders upper arms and hands and she said yes just those areas and I’m in terrible pain. I don’t know what to think especially as I was diagnosed with PMR so know what I felt initially. I might be barking up the wrong tree I've not heard of numbness with the finger tips can this be something I’ve not heard of with PMR. Not sure about the explanation that low vitamin D can cause numbness and pain in the hands plus old age. If it’s PMR then Pregabalin isn’t going to do much and the prednisolone for 5 days reduced the pain considerably. It was a high dose for her who never takes any medication other than b/p tablet until now, and she did look good whilst taking it, mood was much improved too. Can PMR attack someone of this age so quickly. I’ve for years suspected she had PMR as she’s had on and off arm neck and hand pains even in her 60s. Sorry this is so long.
Can PMR make the fingers go numb? : This problem... - PMRGCAuk
Can PMR make the fingers go numb?
Do you know why they said she couldn’t have any more steroids? Xx
No, we don’t know my Brother thought it was an age related thing he didn’t question it whereas I would have done. The pain has built up again it didn’t come straight back after the 5 days of steroid but has now built up to a breaking point again.
Your mother was in pain...her pain was relieved by taking pred (a good diagnostic test of whether she has PMR). The pred was stopped and she is in pain. Why did they stop the pred? Sorry I don't know about finger numbness. But if pred stops the pain then she needs the pred!
Yes I really don’t know look like she will have to go back to the doctors. I think she needs the Pred too. At 96 does it really matter if she takes it if it helps that’s my question to the medics.
Interestingly enough I read that someone had done an analysis and found people who take steroids for a length of time live longer. It is thought it is because they tend to take more care of their diet etc while on the steroids. I don’t know how true that is, but it is a thought.
I would love to see that article!!
I think this needs investigation as PMRpro said she needs to see a Doctor. My Brother will ring Monday morning. If it’s not PMR then if steroids help her generally then surely that’s a good thing addiction at her age doesn’t really matter does it?
I agree with you. Why suffer in pain?
I agree with you - but not many doctors would! They labour under a delusion that pred makes EVERYTHING better and we feel great. If only!!
Hi, I can't help with the PMR and what agingfeminist says makes a lot of sense. Low vit D certainly can cause numbness and bone pain and many other changes, especially in conjunction with low iron and folate, which sounds very much like an absorption issue and would be common at such a good age. That doesn't mean that it can't be improved! My concern is that the malabsorption would generally also affect vit B12 and that the likelihood of being B12 replete at that age is not high. This is far more likely to cause numbness and works very closely with folate. Treating folate alone (presumably with high dose folic acid?) could hide a B12 problem (and being both folate and iron deficient could have masked markers that a doctor would use to spot a B12 problem). What was your mother's serum B12? This can only be a guide as getting the B12 into the blood is only half the journey - it needs to then get to the cells and work effectively. Deficiency is possible at any serum level. Hopefully if the vit D was very low she is on high dose loading doses over approx 6-8 weeks, not just a regular tablet. Best wishes
Thank you for the explanations. The fact she never goes to the doctors only for a yearly pill review b/p test has not helped as obviously the lack of these minerals has declined to a level far below what is healthy. Don’t know about Vit B12. They said Vit D will take at least 7 weeks. I would say ferritin and folate much longer from my own experience it’s a slow job. She hasn’t any energy and before this she was always on the go. She lives on her own in a 3 bedroom house so she’s no stranger to work. She would have had bloods done on vit B12 pre the treatments she’s on now I’d have thought don’t know either. Thanks for you input.
No problem. Sadly B12 is not part of a standard blood panel and would have to be requested. Doctors only find what they know to look for. Personally I found a small dose of methylfolate much better than a large dose of folic. If you are able to ask them to check B12 or to get a copy of results, that would be great. Otherwise you could arrange for a home check through Medichecks, or similar. A nurse can come out, doesn't have to be fingerprick test, if possible £ wise. Best wishes
" saw someone else who said it might be PMR and gave her prednisolone 30mg x 5 days. She perked up was eating better sleeping and walking stronger. After she ended them she went down hill again "
If that improved the symptoms, it would normally count as confirmation that it might be PMR. Whoever said that obviously doesn't realise a 5 day course of 40mg is useless in PMR as it is a chronic disorder. The big question is WHY no more steroids?
She needs a consultation with a doctor - ANPs are often very good for ongoing care but not always the best for diagnosis of something like PMR. And if they try the "can't have more pred" line, someone needs to be firm about getting a justification and a second opinion.
Yes I agree she need to see a Doctor but the surgery is so poor for appointments that’s all she could get then the next appointment were with the same person. Yes my Brother and myself agree that if Pred works and we know it picks the body up on multiple other aspects then we want to know why she’s not to have it. Would PMR attack someone of this age so quickly if it’s this? Atm I feel helpless for her my Brothers away for the weekend and I’m 20 miles away so can’t pop in twice a day like he would but will see her tomorrow. If I was a well person I’d take over but I’m pretty wrecked myself with pain so my Brothers the one who takes her. He doesn’t know anything about drugs/PMR etc so probably didn’t ask the questions I would have done. All I know is this has caused worry for a very stoic woman to one who says she ‘just wants to pull up the drawbridge’!
Oh yes - PMR is reputed to appear overnight though I am pretty sure that if you look there were lots of small signs for months but then it all comes together and hits hard. Same when you calm it down with pred and then stop it - as soon as the accumulated inflammation reaches a certain point, bang!
Oh, I forgot to say before - the numb fingers are more than likely due to carpal tunnel syndrome and is a common symptom in PMR, especially in elderly patients where it was identified as a herald symptom in several papers published in the 80s and 90s. Nor doctors are a bit more aware of the link so it isn't reported in the same way, But it often develops in patients as they get to lower doses of pred.
Not sure how you can deal with this unless you can call the practice to make an appointment and insist on it being a doctor and get through to a docotr WHY. She will quickly go "off her legs" and be unable to live independently so their actions have far reaching consequences. If your brother takes her, give him a list of questions to ask, impress on him how important they are if you can't be there.
Yes I wondered if it was carpel tunnel too as her hands have swollen before but there was no numbness and inactivity with it. If it’s that there’s no chance of getting that sorted she’ll be dead by the time the NHS sort it. I will do that list my brother isn’t so pushy as me but we will have to see the next stage. It’s a worry for sure.
If it is part of PMR - and I'd lay odds there is a good chance - then treating the PMR with pred should sort it pretty well.
Ii really hope so thank you for your support.
I got mild carpal tunnel from PMR. Took an injection in my thumb and it stopped.
Thank you I will have to mention it to my Brother just hope the Doctor is a decent type.
You do get wrist splints which help to some extent,
Carpal tunnel is fairly common with a number of autoimmune conditions, especially thyroid, and B12 and/or B6 may help. Both may reduce the inflammation and nerve damage associated, even if deficiency is not directly the cause.
Is there infusions for any of these deficiencies let’s face it at 96 she hasn’t got time on her side?
It is possible to do IV iron and B12, not sure about the others. You do need cofactors for things to work well together and deficiency in one thing can make another hard to raise. Slow and steady works quite well and B12 injections can make a huge difference quite quickly for some. The healing process can be exhausting, even at a much younger age. If you are close enough to Cambridge, you could try the Iron Clinic (Dr Klein) for iron and B12 investigation/treatment and ask their advice.
Is B12 the same as Folate deficiency? She has a deficiency in this and has a tablet to take each day. No not near enough for Cambridge but it’s worth asking the Doctor about an infusion. Something to consider. This doesn’t account for the extreme pain but think there is a lot to think about.
No - folate is B9. B12 is best dealt with with injections and work very fast.
Hi, that is actually not so far off. Folate is B9, but without adequate B12 you cannot fully metabolise B9, so the symptoms of B12 deficiency are much the same as symptoms of folate deficiency. Treating the folate alone can correct any anaemia but without resolving the B12 deficiency, so the neurological damage will continue and in some cases worsen drastically. All of the Bs are complex in the blood, in that you can have 'normal' or even high serum levels but the metabolism/absorption be failing in some way (often genetically affected) and you be deficient in the cells (which is harder or impossible to measure). With B12 deficiency, folate may be low, normal or even high (mine was). Of course you can have a true folate deficiency, but B12 deficiency is so common and so often overlooked (especially once you are >50 years old when absorption starts to drop even in the otherwise fit and healthy), and missing it can cause such a vast range of issues, that I'd be hesitant to take only folic. Methylfolate is far safer as you can take a much smaller dose to do the job and not risk unmetabolised excess folic. As PMRpro says, B12 deficiency is best treated with injections. It can start to work very fast, as it is needed for mitochondria and therefore energy, but repairing nerves and incorrectly replicated DNA and building/repairing myelin can take months or years. Depends how much damage and how long - much will eventually repair, but unlikely to be all of it. Lots of B12 and lots of cofactors and nutrients will give the best chance. 1 injection every three months will not do the job with nerve damage! You do not need to have anaemia or be macrocytic to have a B12 deficiency (and with an iron deficiency tending to cause microcytic small red blood cells, the immature large red cells of B12D tend to offset each other so blood can be 'normocytic'.) If you have the capability you can do an online consultation with Dr Klein. Cheers
Wow that’s a lot to take in. Thank you. As it stand we are going to see a Doctor with hopefully a positive appointment. I’ve just got to compose a set of questions to ask and are arranging to go with my brother and drag myself there come what may. All replies are grateful received.
My main symptoms of PMR seem to have subsided, but I do now have numbness in the thumb and middle finger of my right hand, dianosed as carpal tunnel syndrome. I have had this a few weeks now, but it is not bothering me so I will give it a few more weeks until I go for treatment for it.
Mums is numbness in the the thumb and index and middle finger and extreme pain in the palms which shoot across. It’s the main thing that’s getting her down as her hands are now useless. It maybe Carpal tunnel problem but as I said the chances of getting it sorted with the NHS is nil!
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