The dance isn’t over until the gorilla decides it’s over. On August 25, 2017, I began a treatment regimen which included weekly injections of depo-medrol that provided me with an average of 11.4 mg per day. Ten months later, I had tapered my daily dose to approximately 3.3 mg and switched over to 4.0 mg of oral medrol. At that time I remember thinking I would be off steroids in approximately 3 months and return to my pre-PMR life.
That was 10 months ago, and although I have been down to 3.0 mg on two different occasions and 2.5 mg once, my symptoms returned each time and I had to go back on 4.0 mg in order to recover. I’m plenty tired of dancing, and although the gorilla has slowed from a foxtrot to a waltz , she is showing no signs of sitting down!
Written by
Admiral06
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That is a good metaphor Admiral06 and you are making tangible progress. This disease of ours can last 2 years and very much more the median time being 5.9 years. So I am afraid the dance must go on, but perhaps she will start letting you sit a few out.
I have never seen any research about it - this for PMR is very new. I'd say that often GCA tends to be shorter than PMR but that is just my impression. Most of the people I know who have had GCA took about 4 or 5 years to get off pred.
Thank you for your reply.I suppose a lot depends on flares and withdrawel symptoms and having to alter the doses of pred to suit what is happening to your body.At 12 mg I sadly have a way to go yet.Thank you for taking the time to reply. Lizzie
My PMR is still active after 14 years - I haven't met anyone who got to that with GCA. But the doctors who try to say 2 years are in cloud cuckoo land - and do both their patient and the charities a disservice. It is the charities who have to mop up the disappointment when at 2 years people are NOT off pred yet.
Yes.... I will tell you now, the mopping from MY disappointment is going to be considerable!!!!!!
So many creative mind here!!!!!
I love this too; " The dance isn’t over until the gorilla decides it’s over, " no truer words!
Hold her a little tighter and embrace the beauty that she is... only when you truly love and accept her (even though she is tiring you out) will she trust you enough to loosen her grasp and let you rest.
So true (and love the gorilla simile - I must remember to use that sometime clever, if my pred addled brain allows me too...)
I do feel that now I have settled down and realised that whatever I do is not going to speed up recovery or get me off pred I actually feel a lot better - managing the beast reasonably well and recognising that the music will keep playing until it doesn't.
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