After 25 days back on prednisone...

[Biba5]

Thank you to all who advised on my previous post. I have almost completed the first month back on 20mg day of prednisone. The effect was immediate, pain gone, stiffness gone, fatigue better, am motivated and catching up with chores I had neglected for months. I feel more positive now, even started back, 1/2 day week at my volunteer job at Hato Hone St John's charity shop after being on sick leave since last year.

Last week my C-rp was 3, down from 6 before returning to steroids. ESR was 23, down from 63. Will have regular bloods to keep track. Full glucose bloods showed possibly pre diabetic, have taken immediate steps to cut processed sugar from diet. Am life long vegetarian with a sweet tooth!

I guess my main concern now is return shooting pains in head, another fall yesterday and headaches verging on migraine. When I started on 60 mg day back in May '23, the shooting pains in head were still there, but once I tapered off late last year (far too quickly I now know), they went away and the awful body pain, stiffness and crippling fatigue took their place until I started back on 20mg and that one tiny pink pill worked it's magic.

Two biopsies and scan with contrast last year and rheumy said GCA negative and referred me back to GP, who then suspected PMR. The fall yesterday was the 9th since November 2022. Again I didn't trip, just went down. Had a first aid refresher course with St John last week and somehow remembered protect the head as in recovery position, arm up to cushion head. I had two concussions from last year's falls.

I'm rambling, but am confused why shooting pains in head, falling and some weight loss has started again now that I am back on prednisone?

PS: it rained last week, my water tank is almost full again 😄💦💦💦

[PMRpro Ambassador]

If you are having falls of that sort, your GP should be arranging a falls assessment, ECG and other appropriate checks to rule out a medical cause, Are you dizzy or feel faint before going down? One cause may be an arrythmia where there is a long pause between heart beats - so it really MUST be checked properly with a longterm ECG monitor over AT LEAST 24 hours but several days is preferable. Or an even better option might be to get a smart watch that monitors heartrate and signals arrythmias - some are even accepted by cardiologists as primary evidence of a need for further investigation. Bcol wrote these posts to provide some background:

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Biba5 in reply to PMRpro]

My GP did suggest a cardiologist but then saw my previous GP had done all the tests, scans with contrast etc a couple of years ago and all was well. I am making an appointment to see her hopefully tomorrow and will ask again about that.

I don't know where I heard that GCA symptoms can include falls, weight loss, shooting pains etc. Is that right?

I have only ever blacked out once, my 8th fall and called an ambulance. C spine scan showed the growth in lung that resulted in lobectomy last February.

I have an Apple watch which has the heart monitor etc, but dropped it, glass broke, $280 to replace!

arghhhh - 12.25am Monday here in NZ. Zzzzzzz

[PMRpro Ambassador in reply to Biba5]

There is a lot that the GP can't do - what you have had done has looked for structural origins but electrical problems is another matter. That was my problem - I was lucky it happened in a relatively safe environment but a friend collapsed without warning at the top of the stairs, broke his neck and is paraplegic.

The falls in GCA may be due to TIAs, Weight loss is common. There is no real reason for shooting pains but none of them should be put down to GCA without making sure there is nothing else because they are far more likely to be due to other things.

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro, this really needs further investigation…