To recap on the story so far - diagnosed with GCA in November 2016 and started on 40mg prednisolone. I've tapered without too much of a problem according to the rheumie's plan apart from ropey day 2/3 after each reduction down to 10mg. Now the fun (ha!) starts. Last Tuesday I reduced to 9mg; had a brilliant day looking after my 2year old granddaughter, almost felt back to my old self, no ear problems, no more brain fog than is to be expected at my age, sun shone, birds twittered and all seemed well with the world.
Then came Wednesday and every day since then - zilch energy, low mood, ear pressure back with a vengeance. Serves you right you in the know will say for thinking you could reduce without using the DSNS method, now see where this has landed you! Anyway, this morning I have reverted to 10mg and I think I'll stay on this dose for at least a week to see what happens before re-attempting the taper more sensibly. Any advice would be most welcome.
And Dorset Lady I will ring you and try to arrange a meet up when things calm down a bit.g
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LizzieGuinn
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Nobody's going to say serves you right, most of us have been there!
Meanwhile stay at 10mg until you feel things are back under control, a couple of weeks or even longer won't matter. In fact some Rheumies recommend patients stay at 10mg for anything up to a year (not sure how many actually do!) - it is quite a significant milestone so don't beat yourself up about having a glitch.
There are various slow taper plans, varying from a couple of weeks to the DSNS which takes about six weeks. Even one that takes a couple of weeks seems to get rid of the yucky feeling (steroid withdrawal) you refer to - I felt the same when I dropped down overnight.
Once I got down to about 6mg and hit the buffers I devised a plan which took about 4 weeks, and if at the end I felt every okay, I just went on to next step down.
If, for some reason things don't feel right part way through - actually that only happened once when dropping from 0.5mg to zero- just stop for a few day, then start again.
You could also try 0.5mg drops each fortnight, still equates to 1mg month, but you might find it easier.
Give yourself a bit of TLC for a few days, put it down to what it is - a glitch - and then try again, but a little slower!
And next time you feel so good - be careful about what you do! Even THINKING about looking after a 2 year old makes me feel weak at the knees! I occasionally looked after my grandson at that age - I didn't have PMR/GCA, I was under 50 and I couldn't have done a whole day! His mother said the same - she was a mere 22!
I had my relapse with GCA about two years ago. I had got down to just 1mg of Pred to to get double vision again was quite a blow. What I have learnt from my consultant is to monitor how I am and not be too hasty about Pred reduction. This has meant keeping a daily diary and a year chart in and on which I have recorded how I feel: well/unwell, headache intensity, energy level, and so on. Having got to below 10mg I have reduced by a half mg (making use of a pill splitter). I am now on 3mg and will drop to 2.5 in about a weeks time if I am still O.K.
I believe that monitoring oneself and recording what is perceived enables patters to be noted. Those patterns guide me as to when I make the next reduction in Pred. So far it is working for me. I hope this approach may help you.
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Should I up the pred?
