What now?
Posted , 8 users are following.
I was taken off 5mgs. of Pred. in September because I was having aches and pains when trying to taper to 4mgs. and put on Hydrocortisone as I had the test and although my Adrenals are producing cortisol, it wasn't enough. Iv'e posted before that Hydro. pushed my B/P up, so my Rheum. and the Endo. Consultant cut out the last 5mgs. making 15mgs. a day dose. My B/P has fallen since (my B/P tablets were also increased). I then started getting niggly aches and pains, backache, pains above my hip, arm and leg pain etc. My regular Rheum. couldn't fit me in so I saw another lady who was very nice, examined me thoroughly and brought her colleague in and they both agreed The symptoms were not a sign that the GCA was returning. My markers (which took over 3yrs. to drop) have gone from 5 to 15 recently. I was sent for a chest x-ray and further blood tests. They asked if I had any recent infections and I said no, (the only recurring thing I have is the symptoms of a cold, which never appears). Anyone else had anything similar? (When I say my markers took 3yrs. to drop, I mean of course they went from 121 to 5 in 3yrs. I started at 40mgs. of Pred in 2015)
0 likes, 4 replies
EileenH catherine34621
Posted
I simply do not agree with the docs. It may not be GCA - but I'll lay odds it is PMR as a symptom that is resurfacing now - you simply aren't on enough pred/HC to keep it under control. I see it all the time on the forums - doctors too impatient to get the patient off pred because a couple of years is come and gone.
The median duration of management of PMR with pred is just under 6 years, that is for half of patients to be off pred. 40% of patients still need a low dose of pred at 10 years. PMR isn;' a short term illness.
You weren't heading for zero - you were looking for the lowest dose that manages the symptoms and, for you, that was 5mg. Those aches and pains were PMR surfacing, not your adrenal function. It wouldn't raise the markers - but the PMR is.
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912?vpass=1
Kacee01 EileenH
Posted
EIleen you are so right!
catherine34621 EileenH
Posted
PMR was never mentioned, in 2015 when it all started, I was treated with Naproxen for approx. 6mths. It cured the headaches (which I only had at night) but not the stiffness and other aches. my temporal arteries then became swollen, jaw ache, weight loss, painful scalp etc. My G.P. sent me to A&E and after many hours, I was sent home with Pred. 40mgs. per day. I then got a call to go to Rheumatology two days later, tested and told that she didnt think that I had G.C.A. (the Pred. made everything better, even after three doses) I was taken off the Pred and put back on Naproxin. Later I developed double vision and a shade across one eye and myG.P. got me in to see a Rheum. in two days. I was put back on Pred. 40mgs.Moving forward to now, my regular Rheum. who I was sent to and who got my diagnosis, advised me to stagger the Pred. it was the Endo. people who told my G.P. that I should switch to Hydro. with "immediate effect". I'm sure everyone is doing their best, it's just confusing sometimes. Thank's for listening.
EileenH catherine34621
Posted
I think you have really been messed about and you are so lucky you haven't lost your sight due to incompetence. and ignorance. You had GCA - even if they didn't think so.