Polymyalgia

stkeyna
stkeyna Member Posts: 2
Hi,
Just wondering if anyone can offer any advice!

I was diagnosed with Polymyalgia about 6 months ago. I was put on prednisolone at 15mg and struggled with the stiffness. About two months ago my symptons changed and my ESR levels doubled to 60 plus and I was put on 60 mg of Prednisolone as I was also getting blinding 'ice-pick' headaches to the back of my head. I have been on that level for about 5 weeks and felt unwell and had a general headache - but thankfully the ice-pick headaches have stopped.

I am now back down to 15 mg a day but still have headaches and feel unwell most of the time. The strange thing is though that I don't have any stiffness? Would anyone know if the drugs or the polymyalgia is causing the unwell feeling and headaches?

I just wondered if someone might have gone through something similar?

Ian

Comments

  • annie_mial
    annie_mial Member Posts: 5,818
    edited 30. Nov -1, 00:00
    Yes, often, Ian.........me, I can never tell whether it is steroid withdrawal or the PMR playing up. I generally wait a week or so and if the symptoms have not faded, put the dose back to the previous higher one. Were you diagnosed with GCA too? 60mg prednisolone daily is usually the starting dose for that.

    I have both conditions, PMR for 8 years and was diagnosed with GCA last year. I am (happily) allowed to manage my own steroid reductions now and I usually find the slower the taper is, the better it is for me. I get the impression that you tapered to 15mg from 60 in just 5 weeks which sounds much too fast a drop - therefore could be steroid withdrawal symptoms.

    If I can help any further, please PM me if you would like to.

    Annie
  • helpline_team
    helpline_team Posts: 2,275
    edited 30. Nov -1, 00:00
    Dear Ian,

    Thank you for your enquiry to Helplines. I wonder whether you've got this information yet?
    http://www.arthritisresearchuk.org/arthritis_information/arthritis_types__symptoms/polymyalgia_rheumatica_pmr.aspx
    In that booklet you'll find the phone number for the PMR support organisation - they are helpful.

    If your condition has not been well explained to you, do make sure that the GP takes some time to fill you in over how you are monitored, targets for your treatment etc as this can make a big difference to your feeling involved and in control of what's happening.

    All the best
    Guy