Update and Christmas wishes

Hi everyone, I'd like to take this opportunity to wish everyone a Happy Christmas, and to thank PMRpro, Celtic, Dorset Lady and ALL the many others who are always there to respond to our calls for help. I look at the site every day, often writing down snippets that I need to remember for future reference! Just to update you all, I have PMR & GCA and am feeling better than this time last year when I had just suffered a flare and my rhuemy had put my pred up to 40mg, he also wanted me to start on methotrexate and I got as far as an apt with the pharmacist who explained about taking it. This was just 2/3 days before last

Christmas and I told him I was not happy about it and would be waiting until after Christmas before starting on it to which he agreed. I had an apt with my rhuemy on 4th January this year when I explained to him that I did not want to take this drug and wanted to reduce my pred by a slow method, he listened to all I had to say and agreed, suggesting how to reduce pred so that by June I should be down to 10mg. In the meantime I had a blip with my blood pressure that worried me which in turn made matters worse, happily it eventually (with help from my lovely phlebotomist who had to do my BP each month when taking bloods) turned out that I had white coat syndrome, now all is fine in that department. We've had several stress situations in our family that meant I didn't get down to 10mg in June as I wanted to avoid another flare if possible. To avoid rambling on too much, when I saw my rhuemy 4 weeks ago he was very pleased that I'd eventually settled on 10mg & that my CRP and BP were good, he wants me to stay on that until June next year when he will start reducing me by 1mg a month until at zero. I'm not sure if my reduction should be slower than that, but no doubt will be posting for advice when the time comes. In the meantime I feel reasonable at10mg except for the fatigue, but I know my limits now and just have to accept it and give in. My only other problem which has raised a concern with both my rhuemy and GP is that both my Haemaglobin and MCHC levels have been dropping so my GP is arranging for me to see the "gastro people" just to check that there is nothing sinister going on, it is not an urgent referral as there apparently several reasons for this happening. Sorry for such a long post, but I know that there are some like me who are interested in hearing how others who may not post very often are fairing! Best wishes to all at this time.

2 Replies

  • And a very happy Christmas to you, too, Sandy. It sounds as though you've had a better year and, hopefully, both the Hb and MCHC tests will turn out to be just a blip or due to something that is easily treated. I agree with your thoughts that reducing by 1mg a month from 10mg is a little ambitious-sounding, but June is a long way off so you can work around that depending on how you are at the time. Lovely to hear that you have a rheumy who is prepared to work with you, and, importantly, listens!

  • Thank you for posting. Always helpful to hear another person's "journey " as this can ring a bell with some. Good too that you seem to have found an understanding rheumy. All the very best for 2017.


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