GCA symptoms on latest reduction?

[Pippah45]

On 1st April I reduced from 15 pred to 12.5 and had some sensations in my right eye that weren't quite correct but not too much concern considering I want to reduce due to CV. My right eye bore the brunt of a Shingles outbreak a few years ago. The eye is just about right now. However I have a lot of irritation on the temple and below - skin irritation. It may be coincidence but it appears to wear off after taking the pred at breakfast time. Drives me crackers for the few hours before that. May just be one of those passing things and nothing to do with GCA but that seems a bit of a coincidence? Has anyone else had skin trouble in the Temple and jaw area? I am definitely going to go DSNS for the next reduction as long as I have enough 1gm tablets to allow it. Some of my 5mg ones halve better than other brands.

[PMRpro Ambassador]

Don't panic about reducing - now it is your history that is significant (having PMR at all and having been at above 5mg for more than a month) rather than trying to force a reduction to 10mg. It will be a long time to get below 5mg. Hopefully CV will also be history by then

[Pippah45 in reply to PMRpro]

Thank you - I wasn't panicking really - just not dallying too long! I have had too many flares of GCA and PMR to want to do anything drastic - although Covid 19 has focussed the mind a bit. Not on high enough dose to qualify for supermarket deliveries and other perks! Yet still feeling quite vulnerable. Neighbour has been great shopping for me - but it's not quite the same as being able to find some inspiration on the shelves! However I was on the Tesco site early this morning and have a delivery booked for next Sunday. Tesco say they are asking people who don't "need" deliveries to stay away but I think they should go further than that. And make slots available to the over 60s or something like that. My niece who is high on the list is able to get a delivery from Sainsburys with 24 hours notice which is brilliant for her - and she is in the Highlands of Scotland! No Sainsbury's near enough my part of the Lincolnshire sticks! Keep well everyone.

[Hidden in reply to Pippah45]

Sainsbury's has let people down too. People will gravitate to the ones that help them but they only have so many drivers and so many slots. I waited 4 and a bit weeks from order to delivery. I am shielded and it took ages to even think about a slot bring open. And yet when priority slots were made available only for priority today there were still slots open last night. I only got my order on weds so far too early for me.

[Pippah45 in reply to Hidden]

I believe it was her GP who got her as a priority with Sainsburys - they rang her

Slightly ironic really as she is isolating with Husband and two strapping sons who could go shopping but then again they could bring covid home if they go out.

[Hidden in reply to Pippah45]

But that's what people have to do. If you have well people you social distance in the house as recommended. As someone who lives alone and is shielded it does make me a bit grumbly if people have someone who, if they act appropriately, can go out shopping. I have had calls from the official body that says I have "top priority" I am at the "top of the lists" and all the supermarkets have my details, but Sainsbury's won't have anything to do with me. Social services have been in touch to offer help if it comes to it while 2 strapping lads sit at home. Oh well, onwards and upwards. I wish I could get an automatic delivery slot though. 🤪😂😴😂

[PMRpro Ambassador in reply to Pippah45]

My daughter is isolating (much to her disgust) - but since OH is considered an essential worker he is out so the strapping son is sent to shop because she thinks it would be wrong to ask for deliveries. He is training as a nurse but only 1st year so not called in but should know how to protect.

Still better than being a paramedic or in the ED which is her usual spot - 2 paramedic colleagues, a crew, have it, one looking decidedly dodgy on ICU, and lots of others working on the "cold" side of the hospital catching it. Probably safer on the "hot" side if you have PPE. IF you have PPE ...

[Carriemetz]

That’s a big drop in one go - 15 to 12.5. I’ve been reducing slowly .5 at a time - and am down to 8. However, have scalp tenderness and the tiniest beginning of sensation of jaw claudication when chewing. So for the duration, as they used to say during the war, despite Covid 19 and the perils of being on any kind of immunosuppressant at this time, I’m staying on 8 till this is all over! Good luck, the tortoise wins the race! Carrie

[Pippah45 in reply to Carriemetz]

Thanks Carrie - .5 sounds the way to go - now. I don't quite know why I didn't think of .5 rather than 2.5 but the Rheumy was saying 5 a time which definitely didn't work for me! How long do you stay before the next reduction?

[Hidden in reply to Pippah45]

I could only do 0.5mg drops from about 10mg down just for PMR. I have a particularly stubborn bit of rash/rough skin on the top of my right jaw. Irritating that it won't go.

[DorsetLady PMRGCAuk volunteer in reply to Pippah45]

If you use a slow taper you may be able to go straight from one into the next.

My slow taper took me 5 weeks to get from dose A to a full week of dose B. If I felt okay, I then went straight into next reduction.

This shows three different variations - healthunlocked.com/pmrgcauk...

Choose which you suits you.

[Carriemetz in reply to Pippah45]

Hi Pippah - I was staying 4 weeks on each .5 reduction. It's taken a year to get to 8 bcos I had GCA, began on high dose, and was on it for a while- but I think the oft-repeated advice on this forum abt coming down in tiny increments is worth its weight in gold. Have been on 8 for three weeks, and was expecting to go to 7.5 at the end of next week- but given those possible gca type niggles I’ve had gradually appear in the last week and a half, I’ll be staying put on 8 until I feel sure they’re going nowhere. Happy to maunder along on it for a couple of months if necessary! Good luck with yr next reduction. Hope it goes well.

[Pippah45 in reply to Carriemetz]

Thanks that is very helpful. Yes if you think how long the two things can last - I am happy with my slow progress. I will go slower from now - I definitely felt my right eye wasn't quite right but it was probably day 11 that all is well. My sister got down to 7 and has had to go back up to 10 and maybe more now - I would rather go slower! Good luck to you too.