It would appear that I have Peripheral neuropathy which can be caused by a number of things.
Does anyone know if it can be a side effect of PMR?
Peripheral neuropathy: It would appear that I have... - PMRGCAuk
Peripheral neuropathy
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Purpleprimate
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According to the literature, it is very uncommon. But that doesn't mean it doesn't happen and if you are the person affected - it is 100% isn't it?
pubmed.ncbi.nlm.nih.gov/303....
What medications are you on?
Yes! Just pred at the moment, trying hard to reduce. There is a discussion going on between the rheumatologist & neurologist as to whether I have PMR or a form of Myositis, I think as to whether to put me on a biological drug. Sent to see an independent rheumatologist who has expertise with both, PMR & Myositis to get an independent opinion.
Do let us know what they decide - they use a range of biologics in myositis including tocilizumab. I assume it is approved in the UK - also works for PMR but not yet allowed.
Well.... seen the Independent neurologist:
'there is little evidence on assessment of an active necrotizing myopathy. It is possible that your current steroid dose (10.5mg) is masking a myopathy & this should become apparent, as we reduce the steroids. However, currently I do not think there is enough evidence to add in a disease modifying agent. You have a level of sarcopenia, which may relate to your long term steroids. I suspect however, the worsening of your symptoms on reducing the steroids is due to steroid withdrawal itself & I would suggest a very gradual reduce of your steroid dose. At the rate of half a mg, or even a quarter of a mg every 2 months. Your inflammatory markers are now completely normal & I think it is extremely unlikely that you have an on going inflammatory process such as PMR. Looking back on your records, your CRP was raised at 42.7 iu/l on the 20 August 2020 just before you started steroid therapy. It has however, on all occasions when tested here (at his hospital) been normal'.
Had numerous blood tests.
I've been on 10.5mg since 13th May 2024 & my symptoms have become worse. In fact over the last 4 years my symptoms have slowly become worse. I make myself walk but this is often painful & very tiring. Good days & bad days. Where do I go from here I ask myself
Any thoughts!?
Well obviously they don't understand the PMR disease process do they!!! I don't know where to go either I'm afraid.
Am questioning all consultants, but the NHS is very very slow, & that's where I will now get any treatment, unless I pay for it myself.
I'm so tired & achy!!!
I see that the FSA has licensed Sarilumab for relapsing PMR. Trials in 2020 were started in the UK but Covid meant they were compromised, although what they had done so far looked promising. Does anyone know what has now happened - will Nice licence it ,given it has been licensed in the US?
Doubt it, unless they carry out their own trials… and if they do then they need to do a longer one than the one they did on GCA [12 months].
Not necessarily. And Sarah Mackie wasn't optimistic about a speedy change in the future in the UK - too many dinosaurs I suspect,
Who might anybody suggest I write to. I'd like to do something pro-active!
Have you read the articles in the current Newswire?
It would make sense your CRP is in the normal range given you’ve been on steroids for some time. I’m not sure you can say you don’t have “an ongoing inflammatory process such as PMR” until you are symptom free and off of pred altogether. Obviously something IS going on hence your worsening symptoms.
Indeed a slow taper is called for, but I’m not sure I’d be tapering at all if my symptoms were getting worse. Do the pred withdrawal symptoms below seem familiar? Unfortunately they overlap with some adrenal insufficiency and actual PMR symptoms, so it can be difficult to identify what’s truly going on.
Severe fatigue.
Weakness.
Body aches.
Joint pain.
Nausea.
Loss of appetite.
Lightheadedness.
Irritability or mood swings.
I have weakness in my legs & cramp like pain, worse after sitting down for a while. I have fatigue as much from from getting around & the pain from my legs. Sometimes lightheaded, & getting depressed. The last consultant I saw whose diagnosis I refer to said I would not feel great as I tapered down the pred. Am I right in saying with PMR the inflammatory markers might not necessarily show up anything remarkable?
"The last consultant I saw whose diagnosis I refer to said I would not feel great as I tapered down the pred"
Why not? Honestly don't think I could ever have said that. If you rush at it so you get steroid withdrawal maybe but the way we go about things, you should never feel worse at the end of a taper step than at the start of it. A few days of feeling it perhaps but then back to feeling reasonable.
I'm back.
He did say go down by 0.5 or 0.25 every 2 months so reasonably slowly but just gone to 10mg & not feeling wonderful.
I've had slight peripheral neuropathy in my feet for a a while but it's just in the last few months it's become much worse, coming up my legs & keeping me awake at night. They say it could be drinking alcohol but that's because they have no idea what else it could be. I had stopped drinking alcohol completely before it started getting worse & have now stopped again.
My CK is 408, Creatinine is 159. Does that mean very much?
Normal CK in females is under 200. That is raised. So is the creatinine. I'd have thought that could indicate muscle damage. Are you on statins? Have they discussed that question of myositis? Because that seems to me to be the priority - not PMR perhaps.
I'm a bloke. Came off Statins because a while back now the new NHS Rheumatologist I saw said I didn't have PMR but necrotising Myositis, who referred me to a neurologist, who then after sometime & many tests referred me to another rheumatologist because he wanted a second opinion hence my post a month ago which I said I'd seen an independent neurologist, which was incorrect as it was a rheumatologist. Hence diagnosed No Myositis & NO PMR but suffering from the steroids - I'm going a bit mad!
Oh sorry - should have checked but shows that it is important to complete your profile fully! And how are they so sure no PMR?
I suppose because they think my inflammation markers are not high. There is a remark: 'I do not think there is enough evidence to put you on a disease modifying agent".
Up to about 1 in 5 patients have unremarkable inflammatory markers - mine were never "out of normal range" but they were raised for me. My ESR bumbled along at 16-18 while I could barely move - my personal normal is low single figures, Symptoms always trump lab results. Treat the patient in front of you - not the numbers or the textbook.
I had a total R knee replacement 6 wks ago. I thought I was recovering really well, but now have a lot of pain in both legs, as much around the ligaments & tendons & I'm thinking my PMR is back (or never really went away). Since the op have seen the Rheumy & Neurologist (says I'll probably never get off the steroids completely) who have basically signed me off ( taking the other independent rheumy's diagnosis, saying it's just the steroids) with follow up appointments in 6 months. So I was at first diagnosed with PMR, then 18 months ago told it was necrotising myositis, now told it's just the steroids which I'm unlikely to ever get off. I just don't know where I am any more. I have arranged to see another neurologist privately & also have an appointment with the independent rheumy. I have had numerous tests scans MRIs & I think the my NHS rheumy has covered nearly everything, but always avoided putting me on any expensive treatment disease modifying drug. They all pull me around to test my strength when I tell them I've lost a lot of muscle, but of course they have no idea what I was like before. I've only to look in the mirror to tell & I've lost about 12kg & put on fat at the same time, my hands are much weaker. I could have picked them up & thrown them across the room previously!
I have been on pred 10mg now for some time not wanting to drop down before or directly after my operation.
Given I'm going back to see the rheumy who diagnosed just steroid use, & I'm also seeing a neurologist privately, how would you approach them & what questions might you ask? Be very grateful for any advice.
How was the necrotising myositis diagnosed? Is it classed as in remission - and is that why you are expected to remain on pred?
The DMARDs used in managing it are mainly pretty reasonable prices - why your scepticism about them not using "expensive" drugs?
myositis.org/about-myositis...
I'm not sure how it was diagnosed, but I was told to stop taking statins which can cause it. I am reducing the pred but have held on 10mg prior to my op & now afterwards until I feel fit enough to start reducing again.
The NHS rheumy has said on a couple of occasions that he thought it is unlikely I will ever stop taking pred.
I thought using a biologic treatment was expensive & had to be approved by a committee before being given to individual patients. I don't think it is NICE approved for PMR in the UK, but it is in the USA.
Ah, you mean for PMR? No, only the cheap DMARDs methotrexate and leflunomide are used in the UK although other DMARDs like hydroxychloroquine and azathioprone have been used and sometimes have a good effect. But if they don't think it is PMR - why would they try them?
That is the point, I don't think they could decide on what I had or have. I had a muscle biopsy but this was inconclusive as I'd been taking steroids for over 2 yrs. The rheumatologist suggested rituximab but it never happened.
I'd be asking why it didn't happen - though I suppose you are on to a bad thing there with it being a rheumy who is blaming pred for everything that you are seeing.
OK, thanks.
I too have been diagnosed with peripheral neuropathy, numb toes (no pain) being the symptom. I'm not diabetic which is often the cause. The toes started about the same time as I was diagnosed with PMR in 2022 and started on 15g,now down to a quarter of a mg as a safety net. I had also had a covid booster 2 months before followed by a covid infection. I have wondered if any of these things could have triggered the numb toes. Who knows?!I am waiting for scans to check for any alternative reasons.
Peripheral neuropathy is also often caused by vit B12 (and/or folate) deficiency. And B12/folate metabolism within the cells can be affected by covid (as can blood sugar). My B12 noticeably dropped and symptoms became worse even though I was already supplementing and increased dose when I got it. As a first step you could get hold of your B12 and folate test results, if you've had some and ask for testing if not. This could show that you are low in B12 (sometimes low B12 can make folate look high rather than low), but a serum test alone cannot rule out a deficiency. Please do not just take a supplement, you need to know if you are deficiency or have a metabolism failure -there are other tests to help, but nothing which can rule it out for certain and taking a B12 or B complex will skew those results and make it much harder.
Investing re B12. I have just checked recent blood tests the neurologist took and see I score abnormal in homocysteine. Looking into what that means it's B12 deficiency! Seems the neurologist hasn't seen these results yet so hope he will pick up on that and advise me. In meantime I will get vitamins and eat lots of eggs and marmite!
Hi, yes raised homocysteine can indicate an issue metabolising B12, but also folate (B9), and B6, and can occur with other conditions. It shows 'dirty burning' of B vitamins in the one-carbon cycle (a bit like methylmalonic acid, which can also rise with low B12, but you can still be deficient with normal Hcy and MMA). Have a look at Food for the Brain - foodforthebrain.org/homocys... . You need omega 3 along with all the B vitamins to get it down, and you may be better with active forms of vitamins (methylfolate perhaps rather than folic - as I am) - take it slow, but best introduce B12 injections before folate/folic to avoid making a neurological problem worse. Good luck with your neuro, but **please do not supplement any Bs until testing completed** - just go for more in diet if you wish, but it is likely that you cannot absorb and need injections, unless you are vegan or know you have some other dietary cause. Either way, test first, then treat, as supplements will raise blood level irrespective of whether they help nerve damage then you won't get a diagnosis and you need to know the cause if at all possible- oral supps cannot reliably repair damage for everyone although they work for some, or work a bit for others, or work for a while and then stop working (that's where I am!) Cheers
This info and advice is so helpful, thanks Bookish!
My pleasure! B12 deficiency or metabolism issues are far too common (also strongly genetic) and often missed, but are foundational for health, so I try to spread the word having found out the long way! The Pernicious Anaemia Society pernicious-anaemia-society.... are really helpful, although PA is only one form of B12D and they are less involved with the research into functional/cellular deficiency (where serum B12 can start off normal or even high). Sometimes a metabolism issue develops into PA over time. I've been taking high dose B12 supplements for years to try to stop that happening (long family history of PA), but it only slowed it down, didn't stop the nerve damage progressing. Just started injections and can detect change, which is brilliant. GPs and neuros don't get much training on B12 so find out as much as you can and keep asking questions, lots of helpful folk around. Best wishes
Such good advice in an area I know nothing! Thanks
We all start off knowing nothing, don't let that bother you x
I consider myself over PMR now, though have had a couple of small relapses since April last year, treated by low doses of Pred and tapered off very slowly. In the last few months I have had tingling legs, and at times slow, weak walking, similar, though not the same, as I had in the worst days of PMR.
Peripheral neuropathy has been tentatively suggested by my GP.
I am scheduled for an appointment with the neurology department soon.
My GP has several other thoughts about what it might be. .A blood test ruled out VitB deficiency. Also low ESR and CPR. She also wonders if it might be a rare side effect of Flecainide, which I have been taking for years to deal with a heart arrhythmia.
Hi, if your GP only did a serum test for B deficiency then I am afraid that it has absolutely not been ruled out. There are in fact no tests which can rule out a deficiency although there are several that can help to rule one in (if you want me to list them, just shout). I am afraid that you cannot rely on either a GP or neurologist to know that, or do the additional tests, or to know that B12 in blood does not equal B12 in the cells doing its job, as they get very little training on the subject. There are a few, you may be lucky, but best not to expect it (that has been my own lengthy experience). Cheers
I was having numb feet a few months before being daignosed with PMR. Now 2 and half year later. I have started having a tingling/burning feeling in the pals of my feet. I will see neurologist in a couple of months and maybe have more knowledge at that time. Or maybe not.
Hit by brain fog and not thinking strait. I should have written: started having a tingling/burning feeling in the palms of my hands.
I had the Singrix jab and 3 days later completely immobilised - all one side affected and pain beyond description. After it all being attributed to long term steroid dependency - GP n hospital (another nightmare) believing I hadn’t unknowingly fallen n broken my hip n(??!!**)not even morphine taking edge off, Guillane Barre considered and eventually proximal neuropathy was diagnosed. Taken me 6 months to get over it, lost nearly 2 stone which was good. Then advised Shingrix does have a Black Box warning. Think any neuropathy is another unseen disability which remains in the zone of limited specialist attention. Walk walk walk to recovery Stay positive best of luck
😱
You might ask your GP about low-dose naltrexone. It cured my peripheral neuropathy.
Yes, I've a friend who promotes LDN & says that doctors know nothing about it, but still has long term ME. One rheumatologist told me LDN helped some people with Lupus. I have sort information from others on this forum but no one has confirmed any positive results with it. What level of dose do you take?
4.5 daily
I cured my PMR with LDN in about 6 months. Currently taking 4.5 mls daily but you have to work up gradually
Thanks, you are the first person to say LDN has cured PMR. I should probably see if it works for me. Why do you have to work up gradually? What dose should you start at & how quickly should you go up, & at what dose should you stop?
Because that is the way they say to use it. My daughter uses LDN for thyroid problems.
Usual recommendation is 1.5 mg for a week, 3 mg for a week then 4.5 mg. This is what I did. However I believe many people find a much slower titration works better, because some get side effects. I got the vivid dreams for a while so I started taking it in the morning rather than at night and this seems to work equally well. 4.5 mg has been found to be the optimal dose for most people. There is a research website on the internet for LDN which has a lot of information about its use in many different conditions, PMR is not much mentioned (the forgotten disease of old people 😂) but a lot of other autoimmune conditions are discussed.
It is a slow process, you don't get the instant relief of pred, but neither do you get the nasty side effects.
I got peripheral neuropathy a year after getting GCA and PMR. So far it's just numbing of my feet from the ball of the foot to the toes. I was wondering if it was a side effect of the Prednisone.
Prednisone can deplete nutrients so quite a few possible culprits - magnesium, vit D, as well as folate and B12 and B6.
Thank you, I'll look into this. I found that I really need B12. I take magnesium, D and folate, but not every day. I'll check B6.
My pleasure. I too really need B12 (as injections, oral is not reliable and does not work for everyone) and I personally found that methylfolate worked far better than folic for me and I don't need much of it although I do take it daily. With D it is best to test, treat as needed then retest to make sure it is high enough but not too high, as absorption varies enormously from one person to another. Magnesium was a game changer and I use it every night, on skin. With B6, neuropathy can be a result of it being too low or too high. It is more likely to be a problem if you take a lot of pyridoxine. Active form of B6, P5P rarely causes the same issue (pyridoxine can block the active form). But we do need B6 as part of one-carbon metabolism/methylation. You could double check copper as taking zinc can push copper down and that too can cause neuropathy, plus blood sugar and thyroid and all the possible other causes......Best wishes
Same here with the injections. D vitamins really constipate me, so instead I get in the sun some for D. I'll check out Magnesium to use on skin. Sounds good. Thanks for all the info!
You are welcome. Different forms of D will have different additives. I use Nature's Answer vit D in olive oil with no trouble and have sometimes applied directly to skin, which might save you some issues. They are US so shouldn't be hard to find. My magnesium is Better You but I'm not sure if they export. No doubt there are similar products. Cheers
There are as others have said very many causes of Peripheral Neuropathy and they are not always easy to diagnose or define. In my own case, and after many consultations and tests, the cause is considered genetic - Charcot Marie Tooth disease - although PMR was an unwelcome add on.
Awful name isn't it!
Definitely! It sounds as though it's dental and very few people have ever heard of it!
Hi, presumably you are getting B vitamin treatments for your neuropathy? ncbi.nlm.nih.gov/pmc/articl...
I have peripheral neuropathy which they said was idiopathic. My GP saw my champagne looking calves and referred me to the Charcot Marie Tooth (CMT) clinic and research team at UCLH. My other siblings and mother had/have numb toes so we are of interest to the research. There is no treatment much and it's inherited - it usually presents in younger people so they are not sure about us.
I was told that had I not been wrongly diagnosed by a podiatrist for having Mortons neuroma they could have tried to save the nerves in my toes dying for ever. They would have made orthotics which took pressure off the nerves. I have great difficulty and pain walking on uneven surfaces or barefoot unless it is thick carpet. My toes are scrolling under more and more now and they cramp up after a while walking.
Unfortunately the CMT clinic has withdrawn its podiatry facility in the cuts, so I have to wait 4 months for an NHS assessment to renew my insoles. I do not trust private podiatrists around here as they are mega expensive particularly with the insoles . I would like advice on suitable shoes as well. Diabetics get that service and get soft deep shoes tailor made for them. If anyone knows of these companies in the UK please flag them up. Thanks
I am sorry to hear that you also have CMT - it does seem to be frequently misdiagnosed. It is inherited but I didn't get any symptoms until I was about 74 so you are not alone in late onset of symptoms. The definitive diagnosis via the blood test came some years later for me. There is a comprehensive orthotics department at Crystal Palace which seems to come under the auspices of Guy's Hospital so you may get referred to them. They can prescribe orthotics of varying types which may help you. I think shoes and orthotics are all trial and error as the symptoms affect everyone differently and there is no simple solution but I hope you find something that helps.
Thank you very much BlueLara. I have not met anyone who had a late CMT diagnosis. Dr Laura at UCLH at Queens Square was not sure but now my siblings are presenting with similar things, she may change her opinion. I did not know it was diagnosed via blood tests although my results are being looked at genetically but that will take a year!
It was Dr Laura who suggested that the Pfizer covid vaccine had triggered my PMR. Who knows and who cares that much when it comes the medical profession?
I live in N London so dont think I can get referred to your clinic but will ask.
Thank you again.
I expect there are similar orthotics departments attached to the hospitals in North London that you could be referred to. Worth investigating. Other members of my family had late presenting symptoms as well so you are really not the only ones.
I have had Peripheral Neuropathy for years long before i had PMR or Pred . Mine comes from nerve endings from my damaged spine. Not only do i have tingling but my feet/ legs feel boiling hot even though my feet are always very cold. I have learnt to live with it now its an awful sensation ! My GP gave me Amitrptyline tablets for it. They do take the edge off. I try not to take them often but have to when its really bad.Hope this helps. Good Luck Viv.
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