I am now down to 10 mg and at 15 mg all the aches and pains were back , still not able to do much and getting out of bed in the mornings is a killer but i do not feel as ill as I did a month ago.
My Energy levels have increased and the willingness to do things is there its just that the body won't let me at the moment.!!
Going to see the Rheumatologist next wednesday and had a blood test done this week so that will be ready at the same time.
will let you all know what the outcome is !!
Over the last month I have found this website invaluable and my thanks to everyone who has answered my questions and helped me to come to terms with this illness over the last month .
x x x
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lynabelle
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If you are still in pain and can't get out of bed then I would say the pred is to low dose. On the right dose the pain should go. 15mg? was that your starting dose? A bit low in my opinion. I started at 20 but flared when I tried to reduce to 15mg so had to go up to 30mg to get over the flare. I am now down to 18mg reducing by 1mg every 2 weeks. I have been on pred since the end of June. I to am seeing a rheumy on Tues for the first time.
Totally agree on the group though they are all fab on here.
Assuming your starting dose was 15mg, to be on 10mg after only one month is asking a lot of your body.....and the steroids. I would only have tried reducing to 12.5 at the very most, providing my blood test results allowed.
You say that you are having more blood tests this week and seeing the rheumatologist, but if you are one of those people who had raised blood test markers at diagnosis, then your blood tests should have been repeated before each and every reduction.
If your reduction from 15 to 10 was on the recommendation of your rheumy, then if it was me I would download a copy of the BSR Guidelines from the PMRGCAuk website and take a copy to your rheumy on Wednesday.
At least it's good news to hear that in spite of the pain you are feeling better in yourself, but pain will drag you down whereas a small tweak upwards in the steroid dose will make you feel even better. Good luck for Wednesday.
I started on 30mg and have had to drop 5mg every week until i see him next wednesday, I went into hospital in september and was sent home 11 days later with all my meds , and that has been pretty much it, i have been left to my own devices , yesterday I was feeling a lot better, but today i have gone right down again, i will print off BSR Guidelines and also I have kept a diary so will take both with me.
It seems to me that because it is not a very well known condition the doctors really don't know how to play it, I was told that they thought i had Temperal Artritis so was put on steroids and after 3 days they took me off them again and I came right down with a bang , so put me back on them the next day, I am a 58 year old woman and my esa was 32 which apparently is not that high and i am not the right age to have it , the biopsy was NAD and so was the CT scan and yet i have all the syptoms of PMR and GCA , neck and shoulders are painful, hips and small of back is painful can hardly walk, was very lethargic and shooting pains in head, jaw pain and bleared vision , so to be perfectly honest with you have I got it or haven't I ?I have no idea , any information I have gleaned has been from this website .
lynabelle - As I understand it, Giant Cell Arteritis and Temporal Arteritis are one and the same and PMR is related to it and can accompany it OR 'stand alone'. After 3 months I was diagnosed with TA (GCA!) but pain was confined to head and neck only so not PMR too, thank goodness. I went almost stone deaf, my eyes were bright red bloodshot
with double vision and blurring and sensation of a 'cover' briefly flashing over half one eye.
After diagnosis I was immediately put on 40 mgs Prednisolone, which I was on for weeks before very gradually starting to reduce it. I started in May 2011 and I am only now down to 10/12.5 mgs on alternate days. I am 'under' my GP and contact is only ever made from me to her. I too am left to my own devices but by now I think I probably know more about it than she does, as you said! I have never had a blood test since diagnosis, which was also done without a biopsy.
It sounds to me though, that there is a good chance that you ARE suffering from both conditions - over nearly two years my energy levels have fluctuated considerably from day to day and I still have other symptons BUT I am beginning to feel it's in retreat. And anyone over 50 is apparently susceptible so that IS you. I think you have to be quite 'assertive' with your Dr and ask him to suggest what else it is if not GCA/PMR. If you are put back on a high-ish dose of steroids you should reduce them very slowly. It is a balance because it is a very powerful medicine and comes with the risk of side effects but it is the only help for these miserable conditions.
I had never heard of GCA but I Googled it and came across quite a lot of info. There is also a very good article about it in Saga magazine this month.
I hope by now you have seen your doctor again with a much more satisfactory outcome; how much worse it makes an already scary situation to feel no one is getting to grips with your problem!
thank you for your kind words, went to see the rhematologist on wednesday and my esr has come down from 32 to 18 so i am going in the right direction, so now i have to go down by 1mg per month so that I will be on 7mg when i go back to see him
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