I was diagnosed with PMR March 2016 (male 57) and started on 30mg preds - the effect was almost magical. The pain (neck, all around my shoulders, hands and legs) fizzed away, the fed up tiredness went with it and by the next day apart from feeling a bit "spaced out" I was pretty much back to my old self.
Was diagnosed with GCA following a trip to hospital last Sunday and put on 40mg of pred for 2 weeks then 30mg for a month and the Rheumys advice was to follow Prof Kirwans guidelines 20mg for 4 weeks then as per PMR - 15mg 12.5mg then 10mg for 1 year etc.
The reason for the post, I feel awful on 40mg. Totally fed up, can't concentrate or think straight , am waking up at 4.00 in the morning. Pain that comes and goes across my neck and top of my shoulders and into my hands, also my legs from knees up. Also lots headaches. The burning headache across and into my right temple has almost gone, has just left a dull ache?
Been to see my GP this morning and he suggested dropping down to 30mg a bit ear
lier, (tomorrow) than the Rheumatologist suggested because he felt that the above could be down to Pred side effects.
Any thoughts or comments greatly appreciated. I am now very wary, if not scared of reducing the preds too quickly. It seems like that could have been the cause of my problems last Sunday. I know its impossible to "know" exactly but it does seem that if I had not reduced so quickly in the first place I would not be where I am now.
I have got a referral to see a Rheumatologist, just waiting for appointment to come through.
Also just had MRI scan results back which show a "mixed displacement between C3 C4". I didnt know I'd got it! Scan shows that neither the disc nor some slight bony spurs are touching the nerves and advice is to leave it alone for time being as hopefully it will right itself.
Or is this just the way PMR GCA works, get used to it and man up, as they!