GCA back again?

I've been reducing very slowly and reached 10mg in October. Instead of waiting a year as I had promised myself following the Kirwan plan, I began reducing very slowly three weeks ago. Yesterday, I had tenderness on the right temple area and this morning on my scalp, where I also felt a little tingling. These are slight but noticeable symptoms and I'm trying to go back to 10mg to see if that settles them; I had only reached 3 days out of seven on 9.5 so may be this will be enough. Any views and advice would be appreciated. I have to see my new GP tomorrow about getting a rheumatology appointment but I have no idea what her approach to PMR/GCA is. Thank you.

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  • Hi maria40,

    Sorry to hear about your reoccurrence of head pains, very sensible to go back up to 10mg and see if that helps.

    Looking at some of your earlier posts I see you have flared before, so I perhaps you might be more susceptible to reducing to others, which is why I guess you were going to stay at 10mg for a year.

    From your comments am I right in assuming you haven't seen a Rheumy before? Or is just because you have a new GP? You're right to discuss, you never know she may be one of the more knowledgeable ones.

    Good luck, and please let us know the outcome.

  • Thank you so much Dorset Lady. I will persevere with 10mg and hope that does the trick. Yes, the reason I was staying at 10 for a year was that I really want to get lower at some point and stop this yo-yoing of flare, raise dose, lower dose, flare and hoped that the year would do it. But I got too eager to reduce and...here I go again. I do hope it will clear because I fear with the present state of A&E, I might not get seen at the hospital.

    I did see a rheumy, but privately, when I had my last big flare and was trying to get an accurate diagnosis which eventually came from an NHS neurologist . Before I changed GPs I asked my previous doctor for a referral, then he retired and I think the referral has got lost between the two surgeries somewhere. I need to see a consultant not only for PMR/GCA but for RA which is getting painful. Oh, the joys of aging!

  • Oh so true! But with age we do learn to persevere! Only fun we have - being a nuisance!

    Do hope you get things resolved sooner rather than later, take care.

  • Saw new GP this morning and she seemed to have a good understanding of GCA. I was sent for an immediate blood test at the hospital and, dependent on ESR results and continuing symptoms, if any, my dose will be adjusted in consultation with her. She is also trying to get me a rheumatology appointment as soon as possible but warned that in present circumstances that may not be very soon. I feel much more confident than I did at my previous surgery where I was left on my own while here it seems that , though my opinions are respected, I will also have support.

  • Remind her that if you have GCA it is classified as a medical emergency (the same as a suspected stroke or heart attack). There are some hospitals that have a fast-track set-up of some form so that patients are seen within a few days at most. GPs seem a trifle oblivious of these facts...

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