Back on Steroids: Hello to all Three years ago I... - PMRGCAuk

PMRGCAuk

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Back on Steroids

GCAVictim profile image
6 Replies

Hello to all

Three years ago I was diagnosed with GCA and put on 75mg of Prednisilone tapering for 2 years till I finished.

I managed to stay off Prednisone for 1 year. During that time I suffered many side effects, well that is what I thought was the case.

I improved slowly but then went downhill suffering the worst pain ever all over my body.

Eventually went to the doctors . GP sent me for blood tests.

I had a phone call just before Christmas to say my inflammation rate was 80%. I now have PMR and back on Prednisone.

Any tips to help me out please. I would be very grateful.

Wishing you all better health in the New Year 2024.

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GCAVictim
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6 Replies
Kendrew profile image
Kendrew

Others with more knowledge will be along, but I think you have to accept that you were very lucky to be steroid free after just two years and that unfortunately the PMR/GCA has re-emerged. Tapering needs to be managed in a way that's very slow & steady and doesn't proceed faster than the inflammation is receding.

I wish you all the best and as always...lots of help here.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi, and welcome back

Would say perhaps you had PMR alongside your GCA first time around, but didn’t realise it as you were on much higher doses.

Whilst your GCA may have gone into remission the ‘side effects’ you mention was actually the PMR chugging along in the background.. until you decided to go to GP.

Same procedure for PMR as GCA really - but don’t just reduce come what may, after starting dose you are reducing slowly to give same relief as initial dose… but as the margins are much finer on PMR doses it can be more difficult.

You may or may not have seen this first time round… but always worth reminding yourself of way forward -

healthunlocked.com/pmrgcauk...

piglette profile image
piglette

Are the steroids working for you or have you not taken any yet?

GCAVictim profile image
GCAVictim in reply to piglette

I’m on 15mg. Only have small amount of pains at the minute in my arms.

piglette profile image
piglette in reply to GCAVictim

How rotten to get PMR after having GCA. I believe the chances of getting PMR if you have had GCA are higher than for everyone else.

PMRpro profile image
PMRproAmbassador

I agree with DL - I think the PMR symptoms of GCA that you hadn't been aware of had never gone away and continued at a very low rate unti lthe inflammation built up enought to send you to the doctor. If you are lucky you will probably be able to reduce to about 5mg easily and even get lower than that.

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