Flare followup

[Caloo650]

Following GCA flare after GA for colonoscopy/endoscopy I finally took myself to hospital with painful swelling on right temple and scalp sensitivity. I saw a rheumatologist 15 hours later. I was on 30mg pred. He advised me to drop to 25mg the next day and then 20 a month later. I knew this was never going to work so upped the dose over the next 2 weeks. Now at 45mg I feel I am pain free.

I see a rheumatologist finally at the end of March. I have only been on 45mg for 3 days.

My question is after reading DLs tapering advice, how long should I stay on 45mg before dropping to 40mg as it seems such a high dose to stay on for a month?

I finally have a rheumie appointment at the end of March.

[DorsetLady PMRGCAuk volunteer]

Two weeks should be enough - but can’t say hand on heart it will be… if it is then maybe same sort of timescale down to 35mg, then same again to 30mg.

Good luck

[Caloo650 in reply to DorsetLady]

Thank you so much for your quick reply. It's so good to know there's expertise from you kind people even if on the other side of the world.

[DorsetLady PMRGCAuk volunteer in reply to Caloo650]

Actually I’m on your side of the world at the moment staying with family in NZ- so you caught me on my morning catch up with a cuppa!

[Caloo650 in reply to DorsetLady]

That's lovely. Planning to come over to Europe in September if I can reach a stable dose of pred.

[DorsetLady PMRGCAuk volunteer in reply to Caloo650]

It is… not really looking forward to going back to UK winter in a couple of weeks… 😳

[Angelsmummy in reply to DorsetLady]

At least you will miss the storms forecast this weekend DL.!not going to be pretty at all!Wont be venturing out with little dog, he would take off like a kite .Enjoy your last few days with family.xxx💐😜💨💨💨🫨

[DorsetLady PMRGCAuk volunteer in reply to Angelsmummy]

Need to put the neighbour on ’fence watch’.. 💨🌬️

[SnazzyD]

I was on 60mg for a week and 40mg for 6 weeks. It’s not an exact science as you’ll find!

[Caloo650 in reply to SnazzyD]

Hard to believe I was on 3.5mg only 2 months ago

[Angelsmummy in reply to Caloo650]

Join the club C,not as bad as you ,but was on 4 1/2 mg,now back to 15.It is what it is,I feel good,apart from the disturbed sleep and a bit emotional but small price to pay for QOL!Good luck and best wishes to you,xx💐😜

[Caloo650 in reply to Angelsmummy]

Thank you. It's the disturbed sleep I find the hardest. Kiwi fruit and some almonds an hour before bed gives me 3 hours to start with and then it's downhill from there!

[Angelsmummy in reply to Caloo650]

That’s interesting,I have pumpkin seeds and the rest of my daily ration of walnuts.Guess at the end of the day,the Pred disturbs us, and just have to accept that fact!Just glad that I don’t have to go to work!xxx😱💐💐😜

[Caloo650 in reply to Angelsmummy]

Me too!

[Bluey-1 in reply to Caloo650]

I got to 2.5mg after over 2 years with GCA. Had to go up to 10 for a while due to ablation and increasingly high inflammation markers last summer. Have titrated down to 7mg so far. I understand your feelings. It’s a hard slog.

[Caloo650 in reply to Bluey-1]

So frustrating and inflammation markers always. normal