PMR or not?

[Lauterbach]

When I was initially diagnosed with PMR in August 2020 it was mainly in my arms. Trying to push myself up from my floor cushion or trying to turn over in bed caused real sharp stabbing pain in my upper arms, especially my left one (I’m left handed). It felt like the muscles were being ripped out by the roots. But it only hurt when I tried to use the arms, the rest of the time there was no residual pain. Then three Wednesdays ago I finished a walk which was no longer or more strenuous than normal, but I started to get pains in my right knee and right hip joint together with a dull ache from somewhere mid-thigh. Now these pains were continuous aches and as this pain was so different from the sharp stabbing pain in my arms I didn’t think that it was PMR related, but just that I must have overdone the walk. However, neither Ibuprofen nor Paracetamol had any effect on the pain which was getting worse and preventing me sleeping. However, I did notice that it wasn’t too bad in the morning but got worse towards the evening (I take the Pred at around 2am) and at about that time read in someone’s post that PMR can affect the joints (prior to that I thought that only muscles were affected). So tried to get quick advice from the doc about temporarily upping my Pres dose – but no joy. So, after a chat with a friendly pharmacist, upped my dose from 5.5mg (current dose) to 10Mg for 2 days,. This has certainly eased the pain, but the hip still aches somewhat.

So after a long preamble my questions are: 1) does PMR pain present itself differently in different areas of the body, e.g. stabbing pain the arms, dull continuous aches elsewhere? 2) As there is still residual pain in my hip. Should I go back to 10mg for a further couple of days or continue at 5.5mg? I still have a degree of residual pain in my arms which gets a bit worse towards evening, however this doesn’t stop me sleeping.

Any views very welcome as I actually have a face to face with the Doc on Wednesday (Yay) who is very much a strict “a 1mg drop every 4 – 6 weeks” man. TIA Alan

[Cosmos22Marigold]

Hi. Im not experienced enough to answer your probkems with the hips and pain ect but i think that coming down 1 mg every four to six weeks on your low dose is too much from my own experience. DL plan of slow reduction from low mgs is the one i am following and at the moment no PMR pain. Other problems but not the PMR pains. See what your doctor Dr says on Wednesday. Lucky to get an appointment i would say but i wish you all the best.

[Lauterbach in reply to Cosmos22Marigold]

Yes I agree and will be discussing that with the Doc on Weds

[piglette]

I find that going up 5mg say for a week, make certain the PMR has been hit on the head and then drop back in two stages works best for me, say to 1mg above the dose where there was a problem. I think most people will say that PMR, like God, moves in mysterious ways!

[Viv54]

Before i finally found out that i had PMR , i used to get the most awful stabbing pains in my arms it was like someone giving you Electric shocks ! but the pains in my body and legs were very different . They were deeper and pain was longer , i dont think you are alone ,Pred and PMR do horrible things to the body.On a positive note it gets better the lower the dose ! Good luck 🌷

[Lauterbach in reply to Viv54]

Yes, like you I certainly found that the leg pain was deeper and longer than the arm pain.

[Jane1947]

What is PMR please?

[Nextoneplease in reply to Jane1947]

Polymyalgia rheumatica - an autoimmune condition causing pain in the muscles and sometimes also the joints

[MiloCollie]

Hi I also had that pain in the arms. My analogy was like muscles being ripped off the bones. I didn’t even realise my hips were bad until I took the steroids! That was a deeper heavier ache. So I suppose pain is different but then we use parts of the body in different ways. Good luck xx

[Lauterbach in reply to MiloCollie]

Hi MiloCollie, Yes that's what confused me. I was used to the "muscles being ripped out by the roots" pain of my arms and didn't recognise the deeper, heavier constant pain from my leg as PMR. Still live and learn. Thanks for your reply

[MiloCollie]

I think that’s one of the things with PMR. Any ache or pain becomes a suspect!! It’s a funny old disease. Ironically my PMR hasn’t felt so good in ages but I’ve got a shocking chesty cough and cold. I’m aching from coughing and knackered from coughing at night! The usual problems still keep coming at us! 😂

[Duketta]

Because I have MS, my doctors kept thinking that my symptoms were MS.During that time (one year) my PMR presented itself as pain in my hip, leg, back muscles, shoulders

, arms and then it went into my knee joints and both my knees became swollen and painful.

Finally a doctor listened to me and diagnosed me with PMR, put me on steroids and within one day I knew we were on track for healing.

God bless!

[Nextoneplease in reply to Duketta]

Thank goodness for the doctor who listened to you!

Hope you continue to feel the benefit of the steroids x