Newbie to this game........

[Sunburst001]

Kia ora. A newbie to this forum having discovered it by chance at the weekend. Thank you – this is a treasure trove of wisdom, experience, resources and knowledge – all from the perspective of people who truly have skin in the game. I’m a Kiwi – although born in Ecclesfield, Sheffield. I’ve only been playing the GCA game since late October 2024 but I am 100% keen to get off that playing field as soon as I can find the way out!

In truth, my challenge is not with GCA (I’ve almost forgotten I have it) but with Prednisone. My body loathes having it – and also loathes having it taken away. I have managed to collect enough adverse side effects to fill an A4 page in very small print. Some of these have required additional medication – I cannot believe how many pills I lay out each morning. About 12 some days. In October 2024 it would have been two.

I haven’t had adequate service from our public health system (a long and tedious story) and have recently been able to connect with a private rheumatologist who is helping me to steer the boat. It has been exhausting doing this for myself over the recent months. Monitoring of my health has been almost non-existent. The hypertension and diabetes were only diagnosed as a result of my insistence – I had to self-fund the blood glucose tests as the public system was consistently ignoring my requests. I’m also very fortunate to be “not backwards about coming forwards” and have enough knowledge of human physiology, and financial resources to make some headway despite “the unresponsive public system. If it had been left to the public system I would have been left on 50 – 60mg prednisone daily until the end of April (the next available appointment) – that would be 6 months at that level. Not good whichever way you look at it. . As a result of the prolonged period on 50 – 60mg Prednisone my immune system has given up the ghost and I now take a daily antibiotic prophylactically.

I am now tapering Prednisone (down to 35 mg) and on Methotrexate (20mg weekly – another one to add to the pile on the bedside table :-).

I have a particular question to ask about the symptoms that can/might occur when tapering from higher doses of Prednisone – ie from 60mg, 50mg etc. I will pop that in another post to avoid this one becoming epic in length.

Noho ora mai – have a great day

Sunburst

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Maybe a have a look through the FAQs section for more information, starting with this one.. which should cover some of your issues. Bit lengthy but bear with it -

healthunlocked.com/pmrgcauk...

Pity you didn’t find us earlier- I recently spend 8 weeks in NZ - my daughter lives on South Island - we might have been able to catch up in person. 😊

[Sunburst001 in reply to DorsetLady]

Thank you so much for your quick reply. I'm surprised I didn't find you earlier - I thought I'd covered every square inch of the internet (even using AI to assist at times) to find answers to my questions. Very glad I'm here now. The link you've sent looks to be a treasure trove - will read that more slowly later. Maybe a result of my own Prednisone-brain, but I can't see where to look for the FAQ section. Is it on this forum or on the PMRGCAuk website? Ngā mihi.

[DorsetLady PMRGCAuk volunteer in reply to Sunburst001]

Hi, and hope intro post helps -

Have a look at this -explains where to find what, and some general tips on getting the best from the site -

healthunlocked.com/pmrgcauk....

[Sunburst001 in reply to DorsetLady]

Brilliant - thank you again. 🙏

[Angelsmummy]

Morning S,glad you found this treasure trove forum.You will now realise that you are not alone any more and are conversing with people with a wealth of knowledge both medically,and fellow “ sufferers”.I too have had GCA/ PMR for about 2yrs plus since diagnosis.3 flares so a bit up and down on the pred merrygo round.Am currently weaning down,now at 13 mg and shortly due to drop to 12,using a six week taper devised by our Dorset Lady.Apart from the feelings of euphoria on the really high doses in the early days,I am not too bad on present dose,but still get the dreaded fatigue for about 2 days if I overdo things.Plus the emotions.,Oh dear,nobody dare cross me if I am “ on one” !Get very tearful,BUT this is part and parcel of our magic pills I guess.Just got to realise that whilst on the Pred,we really are not the person we used to be,we are coming to terms with life changes,and we are not in control of what is happening to us to a certain extent.We Will get there in the end,no matter how long it takes,might be a few bumps along the way but with the guidance on here,our paths will be made a lot easier.Very best of luck to you S.xx💐💐😜👍

[Sunburst001 in reply to Angelsmummy]

"Really not the person we used to be....." Completely tautoko that (= support in Te Reo Māori :-)) Given my moonface - think halloween pumpkin with a bullfrog neck - I don't even look like myself. In December I found myself getting easily irritated and short tempered. So very unlike me - it generally takes a lot to move the needle on my dial - I seem to wander the earth wearing rose coloured glasses and a Teflon raincoat. 😉 I've just realised that seems to have faded substantially - maybe as I'm down to 35mg. Good news - biting my tongue so often was beginning to lose its charm. Noho ora mai rā (stay well, good bye.....)

[Angelsmummy in reply to Sunburst001]

Moon face and frog neck!Just a couple of the side effects of Mr Pred!Hope you are luckier than a lot of us,I got given a nice moustache,sideburns to match Elvis and please dont take offence if you see this PMRpro,but she got( in her own words!) a luxurious black beard!I chuckle every time Ithink of it!😂😂My facial hair diminished( but have noticed that Elvis is back in the room now on higher dose) as did my moon face when I got to lower doses.Getting the “ munchies” is a big part too…Lots of willpower and sensible diet to help with weight gain.Afraid the willpower has eluded me me last couple of weeks,sweet stuff cravings!Will be glad when weather gets a bit better so I can be in the garden away from temptation!Just take this disease/ illness ,whatever we all like to call it ,as it comes,we are all different ,different symptoms,stories but the help on here will be constant to us all.Keep smiling!xx😁😁💐💐😜