Hello all - I’ve had PMR for 3 years, down to 1mg from 15mg after a bumpy ride. Had low level hand and foot pain for over a year but just recently it has become really painful with foot pain radiating into my lower legs (calf throbbing pain and shin splint pain). GP ran bloods, said it’s not PMR as CRP and ESR very low and to get off Pred ASAP as cholesterol increased from 4.5 to 6.1 since I started Pred.
The hand and foot pain doesn’t go away with paracetamol. GP checked uric acid levels to rule out gout and blood sugar to rule out diabetes. He thinks it’s arthritis and has referred me to a rheumatologist.
Just wondering if it could be PMR and if so, do I try to increase Pred for a short period or wait for rheumatologist appointment? Any advice would be greatly appreciated. X
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Bloomsbury123
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I've had PMR for 4 years, currently on 4.5 mg Pred. I get intermittent arthritic pain in my thumbs especially if I use my hands too much. I'm 63 and have a feeling that I have low grade arthritis starting, especially as some of the distal joints in my fingers ( ones near fingertips) are starting to become knobbly too. The shin splint pain could be gait related, calves too. Are you walking or running more on inclines or hills? Our feet don't function as well as we get older and any biomechanical issue with foot function quickly shows up in the lower limb before manifesting in knee then hip. You could ask a physio who has experience in foot biomechanics or a podiatrist/ chiropodist who has studied that too. Please don't increase the pred without a Drs sayso. Could you try Ibuprofen orally or Voltarol gel? If they work then it's not PMR. Regarding your cholesterol. You're only taking 1mg of Pred so it's unlikely to be the only cause of the increase. What are your HDL/LDL/Triglycerides levels? Do you take fish oils or eat a lot of omega 3 6 9 fatty acids? I have a very high natural HDL which means that my total cholesterol is higher than " they" like. The blood tests have changed from fasting to non fasting total cholesterol. PMRpro may be able to explain why???
Studies have been done and this statement appears in the American Family Physician magazine:
" Nonfasting samples are more convenient for patients, and there is no appreciable difference between fasting and nonfasting results for total cholesterol or high-density lipoprotein cholesterol"
They go on to point out that this is in line with evidence that was known 20 years ago but for some reason there has been a sow uptake of all sorts of evidence-based medicine. They also point out that your levels after food would be a better indicator of your risks - after all, we don't spend that much time fasting do we!!! There is a limited number of appointments that are early enough for it to be reasonable to ask the patient to remain fasting.
Hi - thank you for your very helpful reply and sorry you are 4 years down the line with your own PMR journey!The calf and shin pain is very recent and does seem to follow if I’m on my feet for long periods or like yesterday when I’ve been out for a long walk so maybe you’re right about my gait.
I’ve tried voltarol and paracetamol with no noticeable difference which is why I thought our group might have had something similar. It probably is some form of arthritis and I’ve just assumed it was PMR related as I’ve had it mildly for ages.
I don’t know the actual results of my cholesterol test - he did say my risk factor for heart problems was low though. I do eat high fat low carbs which doesn’t help probably.
I have poly arthritis (ie in many, many joints). I find that paracetamol on it's own doesn't work, but mixed with codeine (cocodamol) does work well. Worth a try! No gells/creams have ever helped me but others have good results. Depends whether the arthritis is inflammatory or cartilage/ bone difficulties.
I’ve had a very painful sore left foot for past few weeks. All started with plantar fasciitis I think then moved onto front of my foot. Just throbbed at odd times during day and night. Paracetamol helped. X-ray showed nothing broken, nothing else that would explain the pain. Increased steroids by 2 mg and with lots of rest it’s much improved. Feel I must have strained the top of my foot somehow trying to alleviate the plantar fasciitis! Over the past few months I definitely feel my body is showing signs of being weaker with tendonitis in hip, shoulder and now foot! Nearly six years on steroids and never lower than 6mg yet so you’re a way ahead of me so perhaps it’s just the same problem. I now believe it’s the most innocuous things that can cause a strain or pulled muscle.
Hi - thanks for your reply and sharing your experiences. I feel my body has pain creeping back up, it’s hard to describe it but it does feel like tendons and ligaments, not joints, although not the excruciating shoulder and hip pain I had three years ago. GP said can’t be PMR as it will only appear in shoulders and hips. I guess I will have to wait for the rheumy appointment and cut back on walking and yoga for now!
How strange - I've had something similar affecting the area where the metatarsal for the toe next to my little toe on the right foot! I had stubbed the little toe some time ago, lovely bruise, and it had improved. Mine too disappeared again when I upped the dose due to stiffness that seemed to be progressing to a flare, or a good imitation thereof! BUT - I had just had some extracorporeal shock wave therapy on that hip aimed at sorting out trochanteric bursitis. And after the second treatment the foot miraculously stopped hurting - so I wonder if it was all interlinked
Oh I’ve never heard of extracorporeal shock wave therapy! Have you had this before and did it help the hip. I’ve had hip problems too but in my right hip. In previous threads about this and from your posts I’ve decided it’s likely to be trochanteric bursitis. That has virtually gone probably as I’ve been doing very little dog walking which where I live usually has to involve a hill and uphill was always worst. Rest obviously works 😬 but sitting all day isn’t possible and gets very boring. Just returned from dog walk and foot is aching a little so currently icing it as I type. Hip is ok though 👍🏻
I’ve dropped back to 7mg which may explain the aches but I’ll not drop again yet and see if this settles.
The variety of symptoms many of us get are very challenging but from my experience there’s always someone on here who has had similar and can share their experiences which helps hugely.
It is the same technique as they use for kidney stones but aimed at encouraging soft tissue to heal and regenerate. They've had the device for 4 years and have had good experiences with it. It's a really strange and noisy process, but you get noise-cancelling headphones, the first percussion is painful, the following ones are less and less painful until it doesn't hurt any more. The rheumy says they find it is the second treatment that really achieves a result - and I get a third soon. Something feels better - so it seems to have achieved what it aimed to do!! Although I did add a bit of pred - which has had a fantastic effect on the stiffness!
Just saying on another forum - every time the spirit moves me to move more, either the achilles tendon or the TB wakes up and protests and walking gets sore! By the time I've done the things that must be done, it doesn't leave anything much over.
A friend had shock therapy for plantar fasciitis and said it cost a fortune and did not help. She also had Platelet-rich plasma (PRP) therapy which she said did not work either. She also had steroid injections which did not work. She said everything was really painful. The plantar fasciitis just went away though recently. I had PRP on my knee and it seems to have worked very well.
Is it burning pain? I get burning pain…and sometimes I could describe it as throbbing. Like the soles of my feet have been hit by a baseball bat! It radiates into my calves where it’s like toothache. My hands also burn. I think I have worked out that it is peripheral neuropathy. I think I’ve read someone with par talking about having it. Perhaps have a read. Painkillers don’t help…amatriptaline does. 😊xx
That’s a great description - like a toothache, that’s exactly how it feels although not so much burning just constant pain. I will have a read up on peripheral neuropathy- thank you x
I've had peripheral neuropathy for a while and it is as though someone lit a fire inside my legs. I take gabapentin (Neurontin) for it which lessens the pain. The pain interferes with sleep and I'd have to take a huge dose of gabapentin to sleep....but I don't because I'd sleep for a night and a day!
It’s awful isn’t it? Amatriptaline works well enough for me so far…but if it’s painful it doesn’t take the pain away completely. I know that Gabapentine does the same/better job. I find it so odd still that there are parts of my body that I normally wouldn’t notice…and now that most of it hurts at some point, I pay so much more attention. Feet and eyes right up there when they’re bad, for me. Sleep as well as possible all. Night 💤
Is it worse when you put pressure on them? The back of my heels and tips of my toes hurt when any pressure applied, like weight of bedclothes, but I don't think it is the PMR/GCA
Well, I asked my sister who used to be a chiropodist, and she said it is usually thinning skin, the precursor to bed sores. but I don't think it is the issue here. when I was seeing a physio, he gave me some nerve-flossing exercises, which do seem to help somewhat. It's too difficult to describe them, but there are a few online, described as 'nerve-flossing exercises'. They are mainly lying down, mine were sitting up, but the same actions. I hope that might be of some use!
Thanks Sharitone. In fact at the moment the pain on my heel seems to have gone away. It seems to be intermittent. I do have pain on my feet when walking though. I think it is something to do with the neuropathy.
Hi - thanks so much for your reply - this most closely matches my symptoms although I don’t have back pain thankfully. My GP mentioned this but I couldn’t remember what he said until I read your reply, thanks again. Does Pred help your hands and feet pain by the way?
Hello Bloomsbury...your story is very similar to mine. Havnt read all your replies but will briefly list my symptoms etc.
Diagnosed with PMR 2016. Told Dr I had slight pains in hands several times but this was ignored ..heavy dose 40mgs pred reduced over time. Eventually discharged 2 yrs later and told I was better as all bloods negative. CRP had been 76 initially. I knew I wasn't better!
In desperation I paid to see a private rheumatologist in 2019
He listened, took one look at slight swelling on wrists and suspected RA.
Things to note:
A large dose of Pred implies not PMR
20% of people with RA have negative antigens etc
An MRI of hands using FLUROSCOPY enabled diagnosis. Showing the inflammation
RA typically affects feet and hands
Early treatment will hopefully result in less damage to joints
I wish I had known all this earlier...
I was put on Methotrexate which I now take via easy injection. I am trying out my 3rd Biologic . Have had 2 full knee replacements , a foot Fusion and probably an ankle replacement sometime soon. Sadly my wrists have damage too. It is not controlled yet
This is a difficult thing to diagnose and mine was a polymyalgic onset RA.
You need to keep a good record of meds and symptoms.
Trialling different drugs to find one that works is a long process...need to be patient!
NRAS is a good resource.
Hope this helps..keeping it as brief as I can. Paying for and choosing my own Rheumatolohist was money very well spent...went back onto NHS
Hi - thank you so much. I am in constant pain and therefore considering finding a rheumatologist I can see for an initial private consultation. Your post is really helpful. X
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