B..... GCA

[sharonnorfolk]

having just struggled through 2 years of prednisolone, I went 6 weeks and the symptoms are back. Doctor sent me to the hospital and they confirmed it. Yippee!!!!! So another 2 years of prednisolone starting on 55 and reducing slowly over the 2 years. Feeling pretty down as they made me feel so poorly. Oh! sorry what a misery I am.

[Hidden]

Oh no.... I suspect it's never gone away. I am afraid 2 years was a bit optimistic even for gca. Please don't go by time this go round. Treat the symptoms and slowly taper. I hope you feel a bit better and if you can't moan here... Well you get the drift.🌻

[DorsetLady PMRGCAuk volunteer]

Sorry to hear that......, but as said, probably never went away completely, not that you really want to know that.

Hopefully this time around, the drugs won’t affect you so much, and you’ll get through it without too many issues.

You must be very down hearted, but as we know, it takes as long as it takes....so just go with the flow.

[PMRpro Ambassador]

Please don't believe that it is a 2 year journey - it isn't. Replies to recent posts all suggested 4 to 6 years was much much more likely. And when you don't work to a timetable but to your body you will have a better result and not be left disappointed and depressed.

[Rimmy in reply to PMRpro]

I hope someone somewhere is keeping a 'record' of how often people are encouraged to reduce their corticosteroids FAR TOO QUICKLY - resulting in unrealistic expectations and very disappointing situations such as this. Given as you reiterate so often here PMRpro in reference to the most up -to-date research that people will mostly have this for 4-6 years then why oh why don't so many doctors just 'get it' and act accordingly!!?? (wee rant)

[PMRpro Ambassador in reply to Rimmy]

Doubt anyone is! Why don't they know? To be fair, they often don't have the time to read it all and PMR is probably pretty low on their radar. So that is my mission - to provide all of you with the info you need to educate your own doctor. I have a few top rheumies who now get the idea that more haste is often less speed. One will be heavily involved in teaching GPs in the northof England. We are getting there,

[Hidden in reply to PMRpro]

I hope they come as far as me and beyond though on the pmr side they... My GPS have largely let the rheumy get on with it. I am going ask them to give me a tad more pred on repeat to be ordered as required.

[Blearyeyed]

You're understandably sad sweetie , it feels bad enough being diagnosed with GCA off the bat , but to think you have got over PMR or GCA and then get it but you again must be a big blow.

If you are feeling low do remember we are here for you with a virtual hug and as much support as we can give.

Just give yourself a couple of weeks rest and TLC to get used to the drugs and diagnosis again.

And remember , you did it once so you have already proved you are strong enough to beat it , plus you have all that experience you didn't have the first time round , so you know you will come good in the end XXX😘💐

[sharonnorfolk in reply to Blearyeyed]

Thank you so much for your kindness, I just have to plod on

[SheffieldJane]

Poor you. My guess is this is a relapse of your original diagnosis. I hope it resolves in a shorter period this time. Take great care of yourself.

[Grammy80]

I'm sorry to hear that...but know you have the force of this forum that can truly relate to your illness and needs. I have GCA and I'm just getting on a low dosage which makes me a bit anxious and feel my doctor is moving too fast. One of the wise ones here said...it is the management and not a cure...for me that is empowering. I fully anticipate being in the same boat you are unless I stay on a low dosage...we will see. You are strong.

I understand your disappointment...but you have 👩🏽‍🤝‍🧑🏿👩🏿‍🤝‍🧑🏼👩🏿‍🤝‍🧑🏾👨🏼‍🤝‍👨🏻👨🏼‍🤝‍👨🏼👩🏿‍🤝‍🧑🏾👨🏾‍🤝‍👨🏼👨🏼‍🤝‍👨🏻everyone here. I would have been so depressed if I hadn't linked up with all of them. Hopefully, you will find the same. 💗💗