is the this linked to PMR
peripheral neuropathy : is the this linked to PMR - PMRGCAuk
peripheral neuropathy
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nosroblig
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In my household I have the PMR and my husband has the peripheral neuropathy. But I don't think that's the kind of link you're looking for 
It’s just that I’m under rheumatologist for PMR on 8mg of steroids but it’s not holding the pain. GP has just prescribed duloxetine for neuropathy. Didn’t know if this has happened to anyone else
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It isn't usually considered a consequence of PMR. Some think it can be a consequence of steroid therapy but it isn't very common. If you have developed steroid induced diabetes and not managed it, high blood sugars may cause it.
I Haven’t got diabetes so a bit confused
You have been on pred in the past - are you still? Has your GP monitored you for steroid induced diabetes by checking your Hba1c level while you have been on pred? Unless your doctor did, you may not know. You have told us nothing about your history, just asked a question, and what I replied are common events in patients with PMR on pred.
Hubby doesn't have diabetes either - and he has regular blood tests so we know this is the case.
He doesn't live very healthily. He sleeps in, then stays up until about 2 am. He spends his daytime hours either napping (!) or on the internet. He doesn't walk far when he goes out, and now walks so slowly I can't stand walking with him - it makes my back ache to walk so slowly! And despite best efforts by the family (my daughter gave him a knock-off Stanley mug, which holds 4 cups of water) we can't get him to drink enough fluids.🤦
He takes ibuprofen for the pain, but that's not a great idea for someone like yourself who takes pred. 🤷
This could be ME Heron! My husband does have Type One diabetes though. I do so relate to not being able to walk with him though as he is SO slow!!
Our weather was terrible yesterday - high winds and driving cold rain, so we didn't go out. Husband got on treadmill voluntarily and stayed on for 20 minutes! AND I heard him increase the speed slightly partway through, Will wonders never cease?
May it long continue......!!!!!
I had it more at higher Pred doses so thought it more to do with Pred than PMR. It seemed to happen on some tapers and then would settle to mild/none over a week or two. On 4mg Pred now and mostly just tingling in fingers at the moment.
I don’t have diabetes and other bloods all normal.
Hi, I'd never suffered from peripheral neuropathy until my PMR....For me because of everything that was happening I didn't really register the discomfort....
I started with PMR in Jan 2024 and I'm now down to 4.5g of pred and the peripheral neuropathy is easing, some days are more painful usually when I'm on my feet a lot..
Do you mean you developed this after starting pred for PMR. My husband had peripheral neuropathy but his was from smoking I think. He gave up as soon as that was mentioned.
I don’t know if I have PN they are just giving me the drugs because they don’t want to raise the steroids.
I wasn't aware there are specific drugs for peripheral neuropathy?
All my husband has is ibuprofen when it's really bad. 🤷
Just looked this up, duloxetine (generic) is commonly known as Cymbalta and diabetic neuropathy is one of the things it's used for.
I was diagnosed with peripheral neuropathy about 18 months ago, and then with PMR 5 months ago. When I last saw the Neurology consultant she said she had also had PMR for about 3 years and therefore quite understood the symptoms I was suffering - and was extremely helpful and supportive.
She said they are both autoimmune diseases but other than that she didn't think they were linked.
The Rheumatology consultant (at the same hospital) also said she didn't think they were linked either - just bad luck getting both.
They decided my poor walking and balance problems were PN up to my knees - and PMR from there up 🙃
I also have a third autoimmune disease - Pernicious anaemia.
Otherwise really fit and well 🤣
Omg poor you I don’t think I have PN but my consultant is reluctant to up preds and is trying neuropathy drugs now. Who knows? I have to go back on the 17th of January so we will see if these drugs work.
I will always maintain we each have our own autoimmune syndrome, you have Strippy syndrome, I have PMRpro syndrome. And they ARE linked - because our own immune system is causing all of the symptoms, it isn't 3 separate disorders, just different manifestations of one.
Although I am aware that diabetes is the most common cause of peripheral neuropathy, my first thoughts went to possible B12 deficiency, which can be dietary, but if you have a good diet, there are also autoimmune conditions affecting the stomach, such as celiac disease. And we do know that if you have one autoimmune condition, you are more likely to have another. Also, PPIs can reduce B12 absorption. It concerns me that your GP might not be trying to investigate the underlying cause of the neuropathy. It would be a very simple to have a blood test to check your B12 status and rule that out, at least, so I would ask for that if you do not already have recent blood results, if it were me. B12 stays in the body for a very long time (like years vs weeks and months), so it can take a while to show up and if you do have a deficiency, it could have started and be showing up something that was happening before your PMR diagnosis. To answer your question, the neuropathy potentially may be linked to the PMR, but perhaps not causally and may be an artefact of something else that is going on in your body. You do need to know what is causing it.
It’s my belief and understanding that we cannot produce B12 ourselves!
Also that Preds suck our bodies dry, massively so, of vitamins and minerals etc…!
I had PN before PMR, I take a shed load of supplements, I found my PN, eased considerably and melted away over time. I stopped taking my B12, after I’d run out, 4 sprays per day, from Better Health, btw, and it came back with a vengeance, I didn’t understand until, I had a blue sky thinking moment, then my 2+2 made 4!
Within days of restarting the B 12, the painful throb of PN dissipated again, I couldn’t bear bed clothes on my feet at night even, and now I’m happy to say it’s all good, thankfully!
Hope this can help!
"Also that Preds suck our bodies dry, massively so, of vitamins and minerals etc…"
I think that is a massive overstatement, They do have the potential to interfere with the normal absorption of calcium, vitamin D, chromium, zinc, potassium and magnesium but while it CAN happen, it doesn't necessarily do so. It has always been standard protocol for calcium and vit D to be supplemented but if the dietary calcium intake is adequate, pills aren't necessary. I have been on pred for over 16 years - and my potassium level has never been out of its normal range, The body is quite good at maintaining that.
The body doesn't make B12 - but it is present in meat, fish and dairy. Vegetarians may struggle and vegans definitely do - but that isn't because of pred.
in following the Pred Dr. On Insta, this is the info she puts out, but obviously it is individual based!
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