Hello, glad to have found you

[Japsquar]

Eager to know how to manage GCA. Diagnosed 3 months ago, then broke ankle. Surgery to ankle triggered a flare up - which I didn’t at first recognise. Much confusion! Main problems at the mo are lack of sleep and pain in hands and arms, mostly due to having to hop on a walking frame.

[PMRpro Ambassador]

Hi and welcome.

How to manage GCA? Take enough pred to manage the symptoms and reduce slowly! And rest - it is a serious systemic illness and a serious heavy duty medication and you can't play about with either.

But to say much more than that we need more details- a bit of history, symptoms, dose of pred and so on,

[Japsquar in reply to PMRpro]

Thank you! Was on 30mg when I broke the ankle but had to go up briefly to 40, then 30 after the flare. Now dropping to 20 but not sure about this, blood test results yet to come through to confirm whether this is a good idea. At least the ankle is making sure I rest! I’m just coming to terms with it being a serious illness. Such an alien thing for me. Before this I wasn’t on any medication, never have been!

[PMRpro Ambassador in reply to Japsquar]

Join the club! Most of us were healthy and often gym/exercise bunnies until PMR appeared! But most do get back to it - one guy climbed Annapurna IV just before Covid appeared!

[Japsquar in reply to PMRpro]

Good to hear that!

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

You might like to have a read of this -

healthunlocked.com/pmrgcauk...

Sleep - either speak to GP about it or trying an OTC sleeping aid (seek advice from pharmacist) - Nytol was one I used - not taken every night because you can become addicted , but every 3rd or 4th night, so at least you get a respite.

If you can, catch up with sleep during the day, and try not to get worried about it, it will get better as you reduce the Pred. Do all the usual things like getting into routine going to bed, no screens for a hour before, warm bath or shower, warm milky drink (if that’s your thing), relaxing sprays for pillows etc

Hands /arms just relax them when you can, maybe some exercises to strengthen them -

healthline.com/health/chron...

[Japsquar in reply to DorsetLady]

Thank you so much, all of that really helpful. I know so little and there is obviously much to know and good to have a source of what works at a personal and practical level alongside what the medics say.

[DorsetLady PMRGCAuk volunteer in reply to Japsquar]

Just ask...anytime.

[Telian]

You’re early days yet and it’s an individual thing as to how you cope with tapering your dose - particularly as you get lower. I suffer withdrawal symptoms but can manage them. Flares are different. Having surgery isn’t unusual to cause a flare. Listen to your body and ask as many questions as you like. Hope the ankle heals well. Best wishes.

[Japsquar in reply to Telian]

Thanks. It seems people contributing here take charge of adjusting their own dose. I’m still at the stage of doing what the doc tells me, but I guess with experience that may change. But listening to my body is good, and so pleased to have somewhere to bring questions.

[PMRpro Ambassador in reply to Japsquar]

Only some of us and usually only after agreeing with our doctors. Some doctors keep such a tight reign on the supply of pred that patients can't adjust the dose as they like without running out.

[Japsquar in reply to PMRpro]

Thanks, early days, will see how that turns out

[Telian in reply to Japsquar]

That’s true you do, and have to at this stage, listen to your doctors. Only as time goes on and if their advice isn’t working for you will you discuss further. I thought it was gospel what they told me at first. If things go smoothly, which it can for some, that is a real bonus. Don’t be afraid to say if your struggling with their guidance as we all different.

[Japsquar in reply to Telian]

👍