It turns out my post of 12 days ago was rather premature. Today I have been diagnosed with PMR, not something I thought I would get having got all the way down to zero without any symptoms. Two days after being steroid free and feeling fine, I woke up in the wee small hours with a lot of pain and stiffness. Eased during the day but followed the same pattern most days, some worse than others. Pain and stiffness is mostly across my shoulders and in my groin. The only possible sign of something ominous was a bit of a sore shoulder about 5 months ago. It never got any worse or spread so we (my GP and I) decided it could just be some wear and tear. Still not sure but it is now much more painful. Maybe this was a sign. I wonder too, have I had PMR all along and were it's symptoms being masked by the higher steroid medication. If so, possibly this PMR is not new and may be already on its way out. I am to take 5 mg of prednisolone for a couple of days and see if the symptoms go away. If not I am to increase to 15 mg and speak to my GP next Monday. Here we go again!
Auntie K
Written by
allykat
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Oh, yes this can happen, but not often. I am feel for you.
Now this could be a shot in the dark as I don't know how long you had GCA and am NOT a medical person in anyway at all. Just someone who had GCA only for 5 years and into remission coming up 7th.
I would re-read the Diagnosis and Treatment of GCA (pmr-gca-northeast.org.uk/us... and also take a look at the PMR ones, same link.
Then if, when you had your GCA, they did not do the all the follow up tests ie aorta, pulmonary etc) take them along to your GP (book a double appointment, preferably the last one in the day. I have found they never race you at the end of the day, they seem to listen more.......probably because they think yippy the last one!!
I would also ask for a Snyacthen Test (put that in your search engine) and see if your Adrenal Glands are up to speed, this test needs an appointment with an Endocrinologist. It is a simple test (I fell asleep in a warm room and a very comfortable chair).
Ask your GP for a Vit D test, as a deficiency in Vit D causes aches and pains just like PMR and Calcichew does not bring it up to speed.
Please let us know how you get on and watch out for those GCA symptoms. Take care of yourself and become a 'Precious Princess' as a friend who has PMR tells me and I smile.
It is amazing how many people bumble along on 1mg for ages and are fine - and how many doctors say "It can't be doing anything so you should stop". And then they aren't...
But we know - and some nurses know - that it can happen. With a bit of luck the 5mg will do the job together with some TLC.
How disheartening. The twists and turns are so complex and come unsuspectedly. We always seem to be trying to figure our the past in order to predict the seemingly unpredictable .
Oh, 'Aunty' Kath, how frustrating after your last, very triumphant post!
Well, I think the others here have said it all, but at least you 'know the ropes' with this unpredictable illness - that must help a bit in terms of knowing what to do.
Thank you Uncle Mark. I can't go far wrong if I can stay as positive as you and some others on this forum. It was pretty drastic way to get out of doing the housework though!
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PMR symptoms after 2 months of zero prednisone
6 months on zero pred?!!!!
Exhaustion and stiffness, nearly down to zero!
At zero prednisone, almost a week
