10mg pred

[cazhew]

I have my phone appt with gp on 20th January. Im on 10mg of pred but have a lot of shoulder hip and chest bone pain. When I sneeze I always shout an expletive! My arterial fibrillation does start if I have more pred though. I can push through the pain but it does get me down. Im worried about this adrenal situation too. I don't want to be on pred all my life!!! How do you know you have GCA. I do get bad headaches and my eyes get a bit more bogeyed in the evening. I did have thyroid eye disease btw so I have a squint anyway....bonny bugger me!! Its just done my head in that when I was diagnosed i was 11.5 stone going to the gym and cycling and feeling gorgeous. Now im a big fat blob that can't do anything without being knackered and my hips hurt if I walk round my garden to poo pick....yukky!! I don't know what to say to my gp. He said I should expect aches and pains and that the pred is really bad for me but I need to come down really really slowly from now on. #confused.com

[PMRpro Ambassador]

Easy stuff first: you aren't really into adrenal territory yet - under 8mg is where you may start to notice it. Some people do feel it at 10mg but they are the minority.

Weight problems/pred related fat deposits - better late than never: cut carbs drastically, especially processed ones and added sugar. Limit fruit and root veg. It is possible to lose weight even while on 10mg and above. I lost 35lbs once I cut carbs. It often helps with the inflammation too.

What you describe all points towards being on too little pred for the disease activity. Yes you can push through the pain but there is also the damage unmanaged inflammation is doing to you. That is also really bad for you. So is the immobility that inadequately managed PMR will result in - it is all about balance. If a doctor decides the diagnosis is PMR - they must be prepared to treat it with the one drug that works and accept some patients need more than others and sometimes for much longer. The median duration of management of PMR with pred is just under 6 years - only a third manage to get off in under 2 years.

The hip problem could be trochanteric bursitis, a part of PMR, and that may be eased with steroid injections - I find once the trochanteric bursitis is gone I can often manage on lower oral pred. The chest problem might be costochondritis - look it up and see if it fits.

Your headaches and even bogey eyes could be due to dry eye syndrome - common in autoimmune disorders, I find a liposomal eye spray helps - you spray it on closed eyelids. There are also artificial tears you put into your lower eyelid but they often cause blurry vision. Do your headaches ease with ordinary painkillers? That rarely happens with GCA.

[cazhew in reply to PMRpro]

Yes my headaches go. Ive been really worried. Thankyou once again for the help. Xx

[DorsetLady PMRGCAuk volunteer in reply to cazhew]

In that case, defo not GCA!

[DorsetLady PMRGCAuk volunteer]

Hi,

“He said I should expect aches and pains and that the pred is really bad for me but I need to come down really really slowly from now on.” ...

no wonder you’re confused.....mixed messages. Although he us correct on the coming down slowly!

If you’re on the correct dose for your PMR, you may have slight aches (not everyone gets 100% relief), but not pains.......

Have you considered Costochondritis re your chest pain- that can come alongside PMR...but you should mention to GP anyway.

Another GP with a skewed view on Pred, which doesn't help.....its not bad for you per se, but maybe for your AF - sure that PMRpro will advise in due course.

Pred can affect your eyes unfortunately - and what sort of headaches - not disregarding them, but are you sure they not caused by tension?

And it’s highly unlikely you be on Pred for life......but if you are, you are...and it will only be a very low dose. I guess you’re on AF medication for life, and as a previous nurse you know sometimes it’s necessary.

[PMRpro Ambassador in reply to DorsetLady]

Pred helps manage my a/f - so I'm maybe not the best person to comment!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes I thought you said it did, which was why I thought you could comment....and give some good news.

[PMRpro Ambassador in reply to DorsetLady]

I didn't because it was mentioned that MORE pred caused a/f ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Ok fine, thanks.

[SheffieldJane]

😂 you have had all the good sense advice. Can I just acknowledge your loveable humour. 💖