Just starting on this journey…..

[LucieDoodle]

Hi everyone,

I was diagnosed with GCA and PMR in June 2023 so very much a newbie and it’s taking me a while to get my head round these conditions. There’s so much to learn and understand! From being a very fit 69yr old attending several high intensity fitness classes a week, I have gone to someone who struggles to walk the dog (although I am making myself do it on most days). I find it hard that only fellow sufferers understand how you feel. Family and friends appear to think that you have a diagnosis, are receiving treatment and therefore must be feeling better and improving, not that you never know how you might feel each day. For the last few days I have been walking round in a fog & feeling desperately tired. I was started on 50mg of Prednisolone, reduced to 40mg after five weeks, 35mg two weeks later and down to 30mg nine days ago. Is the way I’m feeling likely to be due to the reduction in pred or just par for the course?

Any suggestions would be gratefully received.

Thank you.

[PMRpro Ambassador]

Hi and welcome!

Could be either, that is quite a speedy reduction in dose but you are still at a highish dose and pred can cause all sorts of strange feelings plus the dose has been changing quite often. The GCA itself is a serious systemic illness as well so it can make you feel pretty ropey, a flu-ish sort of feeling is common.

Try telling them that the pred is just a management strategy to combat the inflammation which without the pred could result in you losing your sight. The illness itself is still active, the pred doesn't cure it, there is no cure, and it can take years to burn out. That might garner more sympathy. Incurable sounds dire enough maybe - despite the rosy cheeks that pred tends to cause!!!!

[PMRpro Ambassador in reply to PMRpro]

Totally forgot this

healthunlocked.com/pmrgcauk...

It was made to bring the message over to family and friends - MIGHT get you somewhere!

The printed stuff often makes them glaze over, they may cope with the film!

[LucieDoodle in reply to PMRpro]

Thank you for your very speedy reply and for the link to film. Will definitely try that! Feeling a bit better today. When it’s all so new, it’s difficult to know if it’s the meds or the illness making me feel the way I do. Hopefully things will begin to settle soon.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome….

Maybe have a look at this [and show to any friends/family who may be interested - might help them understand a little better.. but they may well doze off!]

healthunlocked.com/pmrgcauk...

When you feel a bit more like it, have a browse through the FAQs as well - you’ll see a banner under first post on this page one you’ve opened post, or pinned posts [right hand side of screen] - but here’s a link for ease -

healthunlocked.com/pmrgcauk...

Any post that you think might be useful you can save - and then refer to at leisure.

Brain fog and fatigue are all part of your illness and not helped by the Pred, but it does improve….in my intro post do read the links re fatigue etc -it is very common, and also very debilitating…

There’s always someone around to help…. And we DO understand and have probably been there…

[LucieDoodle in reply to DorsetLady]

Thank you for your very speedy reply and for the links to your article and FAQs. Feeling a bit better today. When it’s all so new, it’s difficult to know if it’s the meds or the illness making me feel the way I do but hopefully things will start to settle soon. You mention in your article the possibility of receiving it in Word format. Please could you advise me how to message you with my email address? Many thanks.

[DorsetLady PMRGCAuk volunteer in reply to LucieDoodle]

Just tap my name or picture and it will take you to my profile - there you’ll find a CHAT button - tap that, takes you new page then just write and send.. if you have any issues come back on here - and I’ll start the procedure, but if you do it, tb]hen you’ll know for future.

[SheffieldJane]

You are at such an early stage of significant systemic diseases and you are on the necessary but brutal high doses of Prednisalone. It is perfectly normal to feel as you do. Walking your dog is like a marathon is for fit people. Don’t try to run before you can walk. If I hadn’t had a baby grandson to care for, I would have spent the time in bed at your stage. It is good that your canine friend provides such an incentive. Once you achieve the lowest possible dose of Pred that gives you relief from symptoms, you will be able to do more by pacing your activities. These diseases can drag on for years and acceptance is hard won. One’s loved ones never seem to get there. Look at the tapering programmes in FAQs on here. It is vital that you taper slowly and gently.

[LucieDoodle in reply to SheffieldJane]

Thank you for kind words and advice. Our dog is certainly my cuddle bug and a huge source of comfort at the moment. When it’s all so new, it’s hard to know if it’s the meds or the illness making me feel the way I do. Hopefully things will begin to settle soon.

[piglette]

PMR and GCA are life changing illnesses. The mantra is rest, rest, rest. Steroids are not a cure sadly. They just make life more liveable. If you start having pain STOP reducing.

[LucieDoodle in reply to piglette]

Thank you for your reply and advice. When it’s all so new it’s hard to know if it’s the meds or the illness making me feel the way I do. Hopefully things will start to settle soon. Thank you.

[piglette in reply to LucieDoodle]

I found because I had always been well it was a real shock as I did not know how to cope.

[LucieDoodle in reply to piglette]

I totally empathise with that.

[piglette in reply to LucieDoodle]

Join our PMR GCA Gardening group facebook.com/groups/6288051...

[Sharitone]

Sadly, there is nothing you can do to circumvent the 'deathly fatigue'. We've all tried! but if you are managing to walk the dog, then you should really be proud of yourself. We know how hard it is!

[LucieDoodle in reply to Sharitone]

Thank you for reply and kind words. When it’s all so new, it’s hard to know if it’s a the meds or illness making me feel the way I do but hopefully things will start to settle soon. I shall endeavour to persevere with the dog walking!

[Viveka]

With GCA once I was under 20 mg I was able to exercise normally (pilates, yoga, zumba). Got easier with each reduction. Not sure about HIT - it's easy to exhaust yourself so I'd be a bit wary and start with something a bit easier till you get the measure of things. Great you're walking the dog; if you like classes, somatics or a really gentle yoga is good at higher doses of pred.

[LucieDoodle in reply to Viveka]

Thank you for your reply and encouraging words re exercising. I’m trying to continue with Pilates but anything else is a bit beyond me at the moment much to my disappointment - I love my classes! I will endeavour to persevere with walking the dog! Thank you