I've had PMR for 18 MTHS and down to 2.5 mg Pred daily, about to reduce to 2mg. But getting increasing cramps in neck , from left shoulder to head! They wear off in a few minutes, if I can try to relax and go floppy! Is this another ugly face of PMR, or the sign of GCA? Pain does go up into head. Should I stop reducing?
Please advise, oh wise ones?
I would put a hold on reducing whatever the cause…..it may or it may not be PMR related, so you need to establish that first.
As it’s one sided have you done anything that could have caused that, sleeping awkwardly, in a draught, carrying anything heavy etc…?
Thanks DorsetLady, I have had similar cramp in other side too, but not so often as this last week. Maybe I should change my pillow? I have had a nasty cold for the last week, so possibly overdoing it too. I will put off reducing for a while and see.....
pillow? Yes could be…
It might be but do have a look at this. I’ve thought I was having a GCA relapse a few times but it was just the sternokleidomastoid muscles being tense from postural stress and weakness.
Like Snazzy, I might suspect sternocleidomastoid muscle problems
thank you too, PMRpro! Good to get feedback and saves worry!
Have you tried taking a painkiller to see if it works? If it does, you can possibly discount the PMR causing the problem.
my neck|sternockeidomasyoid cramps are from low magnesium.
I get this every so often, particularly if I've been on the laptop for a while. I've found that using the mouse for too long puts a strain on my shoulder, neck and head. Maybe best not to reduce further at this stage until you know what's causing it.
I would seek medical advice. At the very least get an urgent appointment with your optician as they can do a deep investigation into and the back of your eyes. The veins should be flat. If there are any issues, they can refer you to either back to your GP or the hospital. Any suspicions of GCA should be investigated urgently as this condition can cause blindness and/or a stroke.
Hope this helps. My GP has said that I should only increase or decrease prednisone with a clinician’s advice/support and not to do this myself.
I have had PMR for 7 years, during which time I have had incredibly painful neck cramps down the right hand side. They have come and gone regularly. My doc has never been particularly worried and just said don't use the computer too much! There seems to be no reason but certainly never had them before PMR.
Thank you all. I do take Magnesium supplements and now look after my own medication, with the unseen Doctor writing the prescription. The last straw was when he reduced my Pred from 5mg to 2.5mg overnight and I had to suffer a big flare up! I have been unable to see a GP, as they don't appear to think that PMR is a problem!
I trust THAT was rectified. What sort of doctor does that to a long term pred patient? PMR is a whole different ballgame,
I managed to speak to a nice locum, who seemed to understand a lot more. Unfortunately here in Cornwall they seem to be away from the mainstream!
Obviously Doc Martin needs to spread the word about managing PMR and GCA - his patients are miraculously cured ...
I noticed doc Martin was very efficient! I thought he was going to do the biopsy himself too! What an amazing doctor! Every practice should have one 🤞
I thought he did - on the kitchen table! He had been a vascular surgeon in a previous life until he got upset at the sight of blood ...
Ah, he did! Amazing! 😊
I only know from hearsay mind you - can't stand it!!!!
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