I'd like to say a big thank you to Pats & Sue for acting as moderators on this Forum. It is such a comfort to be able to get advice and talk to other sufferers. No matter how good friends and family are there is no substitute for someone who has been there and really understands what these illnesses are like.
Welcome to Catie and thanks for giving the others a well earned break.
I can never express how much I have gained in support from both the phone links and this 'site' . If I have been able to help others to carry this 'cross' of an illness then it's a bonus, but for me the advice I have received and the knowledge gained has made me realise that, on my own' I might have gone under.
I am still a member and, of course, I will have input, but for the 2nd time I am on the difficult lower doses and need to pace myself like crazy. Tomorrow, 6.5mg and I know it will be rocky for a few months yet as I listen to my body and reduce accordingly.
This summer - ha! ha! - I'm hoping to relax a little and work slowly on the drops. I have come to believe that the secret of beating this illness is in the reductions of pred, and it's different for each of us. Try explaining that to certain doctors!
Pats, thank you for your diligence over the months ...........what a great help you have been to every one,and good luck with your reduction.I am on a similar path.I will be volunteering at St.Andrews Uni. to be a"patient" for medical students who will be Doctors.Hope it will be beneficial for future Surgeries and G.P.s.It will be question and answer sessions,not advice for the "patient".It is unpaid,just travel exs.God bless.Soo.
Pats I have had PMR for nearly six years and I too have been on the forever reduction saga. I have come to the conclusion that I feel guilty for having had it for so long and consequently make reductions more rapidly than I should.
If the inflammation is still active then obviously a lower dose of prednisolone will not be sufficiently effective so the reduction is pointless.
Six years ago I was on 20mgm of prednisolone tomorrow I will be on 4mgm.
The lowest I have been on is 2mgm.
When PMR is gone I will be off them; until then I am going to accept that the treatment is necessary and it's not my fault.
Thank you and all those who contribute to this forum and I wish you well with your plan.
Remembering our 'meeting' at 4am on the website, your hilarious account of your enormous rabbit who challenged your partner for your attention, your words which miraculously, after a lifetime of addiction, got me off sugar, your wealth of information and attention to detail. I am with you on the low dose, having just had to cancel, for the second time due to PMR, a holiday with friends in South Carolina. Looking after Numero Uno as you say is the most important thing of all at this stage. Enjoy your rest Pats and Sue and come back!!
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