Painful thighs

[Zhenya]

Hello all

I have had PMR for 3.5 years. Started on 15mg pred, slowly came down to 4mg, but had flare at this dose. Have settled comfortably at 5mg for the last few months.

My very first symptom way back in 2014 was pain in the backs of my thighs but it wasn’t until the pain arrived in my arms and shoulders that I sought medical advice and was diagnosed with PMR. Since Nov 2014 I have only had pain in my arms and shoulders...until now. Suddenly the pain has gone from my arms and shoulders and returned to my thighs!

I had my 6-month check-up last week with NHS rheumy, who said to try increasing to 6mg. This has made no difference after 5 days. He has put me down for an MRI scan as he wonders if there is a problem with my spine. I know the pain of PMR though, it is unmistakable.

My question is...is this unusual for PMR pain to move from one part of the body to another, and should I increase my dose by 5mg for a week or so to see if that works?This is recommended for a flare in one of today’s posts, but I am not sure if my painful thighs count as a flare.

Sorry to ramble on.

Thank you.

Zhenya

[SheffieldJane]

This is not a ramble at all Zhenya. I think the pains do seem to shift around but are of equal severity. Some people seem to be able to read their pains and know what heralds a flare for instance. I have not been able to do that. My PMR onset was signalled by excruciating groin pain that made it hard to walk, lift my legs etc. Closely followed by bone breaking shoulder pain and an inability to lift my arms. I have, after 2 years, never experienced the groin pain again. I do however experience bilateral shoulder pain, knee pain, leg pain and headaches. It’s almost as if the problem areas take it in turns. This is nowhere near as severe as in the beginning.

I would be tempted to increase my dose for relief but would be concerned about spoiling the MRI scan result and might hang on until after it.

I am also aware that my XRays have shown significant Cervical Spondylosis and deterioration in my lower spine too. This pain can muddy the picture somewhat but it does respond to painkillers unlikePMR pain.

Good luck with your scan. From my point of view the answer to your question is yes.

[TooSore]

You may need to try more prednisone but first think back to see if you've done anything to aggravate the muscles. (Like shoveling snow) As we begin to feel better we also pick up our activity level and sometimes our muscles complain. One clue might be if it's the same on both legs? Does it respond to regular pain medications? Is it worse in the morning? Fingers crossed that it settles quickly!

[DorsetLady PMRGCAuk volunteer]

Hi,

Definitely a flare methinks especially it if doesn’t respond to ordinary painkillers. Have you tried? As you say, YOU know your PMR pain.

If you try painkillers and they don’t work then trial the increase in Pred for a few days, look at Celtic response to SusieQQ

healthunlocked.com/pmrgcauk...

[Lucybud3 in reply to DorsetLady]

I thought painkillers were not supposed to be taken with pmr? I just found this out after I took a baby aspirin for two days. For the last four mornings I have had terrible vertigo on getting out of bed with nausa. Any connection?

[PMRpro Ambassador in reply to Lucybud3]

Nothing to do with not taking them with PMR - the point is that they rarely make the slightest difference to PMR pain so what is the point? In fact, a daily "baby aspirin" (I assume as in the low dose sort used for cardiac protection) has been recommended in the past for all patients with GCA although that is now no longer suggested.

Mixing NSAIDs and pred on the whole is not a good idea except under medical supervision and even then can go pear-shaped.

But whether those 2 baby aspirins was the cause of your vertigo - no way of knowing. You have spoken to the doctor I assume?

[DorsetLady PMRGCAuk volunteer in reply to Lucybud3]

PMRpro has answered - stolen my words again! I don’t mind.

I continued to take 75mg Aspirin all through my Pred days, but GP was aware - and that’s okay. As stated painkillers won’t address the PMR, but if you are trying to ascertain whether the pain is PMR or something else sometimes it’s worth trying.

So paracetamol okay, but not Aspirin or ibruprofen unless under doctor’s orders, and even then you need to protect stomach.

[Polywotsit PMRGCAuk team member in reply to Lucybud3]

Some people do find paracetemol helpful, especially when reducing the prednisolone. Do try it if you are able to take it.

[PMRpro Ambassador]

If it were me, I'd try a few days of a higher dose just to see - and having collected some evidence, discuss it with the GP. 1mg is barely here nor there! A few days at plus 5mg won't affect an ordinary MRI scan - it is the ones with PET contrast that would be affected. You can try plus 5mg for a few days now - and it could be quite a while before you get an MRI so if it didn't work you can just stop.