GCA little light at the end of the tunnel !

[DevonMichael]

I am sharing this in case others are on a similar path. I have had GCA for a year and gone from 40mg prednisolone to my current level of 4mg. No problems (apart from becoming pre-diabetic with raised blood sugar levels) however markers have normalised and mercifully - no flares. Saw the rheumatologist today for 6 month review and he says with present progress a 6 month review and discharge the next step. Shedding the medicine cabinet is something to look forward too and celebrate!

[PMRpro Ambassador]

Excellent! Long may it continue!

[Freddie01]

Excellent news. I see my consultant in 2 weeks time and hoping for the same. I was diagnosed last October with GCA started on 60 mg preds now down to 6mg. Like you I was pre diabetic but blood test last week shows I am out of that category. I have tried to remain positive despite the moon face and 2 st weight gain I could have sat in my fridge just eating the first few weeks, something I don't wish to experience again.

[DevonMichael in reply to Freddie01]

Encouraging to hear of your progress both on reduction and stepping back out of pre diabetic (which I am hoping this will happen to me). I too was always hungry and have replaced the biscuit jar with the fruit bowl. I smash the 5 a day everyday!

[Freddie01 in reply to DevonMichael]

Hi DevonMichael I went back to my Gzp with regard to me eating anything that moved. I love fruit but he told me to try and avoid it due to the sugar content. I am not a big veg eater so I did/do struggle, he signed me up to a 10 week pre-diabetic programme which did help. This group is very helpful for so many xx

[PMRpro Ambassador in reply to Freddie01]

Carrots in moderation and cucumber maybe????? I do realise most people won't eat cauliflower, broccoli and sprouts raw as I do...

[HeronNS in reply to DevonMichael]

My daughter, a dietitian told me, when I got high blood sugar, to always eat some protein whenever I had carbohydrates - so cheese with fruit, for example, or nuts with grain.

[Janann25]

Such an encouraging post, especially as I'm at the very beginning of my journey. Thank you so much for your update.

Jan

[Judy211]

That's brilliant news! I was only diagnosed with GCA in March and I feel like I am on tenterhooks just waiting for the next bad thing to happen. Maybe it will go more smoothly than I think...you've made my day! Really pleased you have done so well.

[DevonMichael in reply to Judy211]

GCA has been a voyage of the unknown. As I got down from double figures I got nervous and because the adrenal gland that produces steroids needs to kick in around 7.5mg I got more nervous around that marker- now at 4mg I am feeling more optimistic. I know I am not there yet but this website helps knowing what others are experiencing! Good luck with your reduction.

[SheffieldJane]

Happy for you that your journey was so smooth. What about the research project? There will be nothing to look at except happy healthy you.😅

[DevonMichael in reply to SheffieldJane]

Well the research project is headed "GCA/PMR Retrospective" so it is looking back. I think they want recent experience for the interview data and the blood will help in looking at DNA and gene disposition and lots of other stuff. I'm just glad someone is trying to find out why it happens and search for a cure for future generations!

On my own situation I have gone from thinking I may have a lifetime condition to thinking I may be free by Christmas and off six medicine intakes a day. Prior to GCA I never touched a tablet!

[SheffieldJane in reply to DevonMichael]

This sounds really worthwhile and interesting. GCA must have been a terrible shock. I hope you are free by Christmas. You obviously started from a pretty fit base, it must help.

[Rimmy]

All sounds great - and I am surprised at your quite rapid taper - I am just down from 60mg to 55mg. I realise we are all different but I am trying to be cautious and remind myself that PMR/GCA will likely simmer away for at least a couple of years despite the level of Pred I take and if it is too little I may have to taper 'up' again - which sadly seems to happen to quite a few people. But maybe I am just having a less than 'optimistic' day and it would be great to have your kind of experience !!

All the best

Rimmy

[DorsetLady PMRGCAuk volunteer in reply to Rimmy]

Hi Rimmy,

I think DevonMichael may be one of the fortunate GCA patients - males do seem to be able to recover from it more quickly than ladies. Don't know why, maybe one day reasearch will tell us!

So don't be down-hearted, as you say we are all different. It's difficult, certainly at the beginning, to accept we have a long term illness, but I think if you can say to yourself, "okay this is likely to last the best part of (say) 5 years, and I'll manage it" - you will.

Once you get lower on the Pred, and the worst of the side effects are gone, and the fear of your sight being affected, plus no (or very little) pain you just get on with life.

Many people have a chronic illness and take tablets to manage it - that's what you're doing - but at least with GCA/PMR there is a very good possibility it will go into remission. Can't be said about all illnesses.

Take care.

[Rimmy in reply to DorsetLady]

Thanks so much DL - women so often do get the 'raw end of the deal' - and here too it seems - with the fact that these particular diseases impact on us more often than our male counterparts - and that also often means less research attention as well - but that's another big and some would argue 'debatable' subject.

I really do appreciate your encouraging words and thoughts however - and I am very grateful to have something which I can hopefully fully recover from one day - I recognise THAT is at least some 'good fortune' cf. the challenges so many others must face and so far I am otherwise 'healthy'.

I feel much brighter today - I think I was just having a 'moment' (LOL) - exhausted by my own reflections/chatting !!!

Thanks again for your as always kind response

Rimmy

[BonnyQuine]

This is v encouraging. My GCA journey is v similar, but only reaching 7 months, w a couple of flares + lots of ups and downs. Today is a better day for me, and to see good news like yours is v heartening - thank you.

[YB718553D]

So pleased you have gone to such a low dose. My sister is not able to reduce her steroid , in fact it has had to be upped because of Arterial Artritis. She is dissapointed.