Here I go again! Withdrawal or flare?: Hi everyone... - PMRGCAuk

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Here I go again! Withdrawal or flare?

Tiggy70 profile image
8 Replies

Hi everyone, I think I know the answer to my own question but just need the affirmation of people whom I trust.

I started a Pred reduction just under a month ago on the 25 April from 9.5 mg to 9mg. My Rheumatologist insists that I reduce by .5mg each month although I’ve never managed it yet without issues. I was following the slow reduction (DL’s) plan for almost 3 weeks and everything was going fine. On week 4 we went on holiday to Egypt and because I was feeling so much better I foolishly decided to speed up the reduction and took 9 mg instead of some 9.5 mg. I returned from Egypt last night and for the past 3 days my PMR symptoms have returned (aching arms, shoulders, hips). I don’t think I’m having withdrawal symptoms as pain relief isn’t really helping that much.

Based on my past experiences of flares I’m thinking that I need to up my dose to 14 mg for about 5 days then drop back to 9.5mg and stay there for a while before attempting the reduction to 9 again. Does this sound like a good plan? Thank you🌸

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Tiggy70 profile image
Tiggy70
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8 Replies
PMRpro profile image
PMRproAmbassador

NEVER EVER reduce while travelling!!! And really - don't try to speed things up either - it rarely ends well!!

When did you start the journey home? What had you been doing just before the symptoms started up?

Tiggy70 profile image
Tiggy70 in reply to PMRpro

Hi, thanks for such a prompt reply.

We left Egypt on a flight last night around 10.45 pm. (Egypt is 2.5 hours ahead of the Uk). Security checks to get back to England are arduous to say the least. Multiple passport and bag checks so lots of waiting in line. We landed at 2.30 am (uk time) having managed a little sleep. Our car was parked on a multi storey car park just across from Birmingham airport terminal building. On reaching the car it wouldn’t start - dead as a dodo!! It’s an automatic and we couldn’t get into the boot or under the bonnet. The car park assistance couldn’t help us. We had to wait three hours on the car park for the AA to rescue us. Got home at 7.15 am. Not the end to a holiday anyone would wish for.

In Egypt I was mostly relaxing in the shade by the pool (it was 30 degrees plus) and having a leisurely swim occasionally interspersed with too much eating and drinking (mostly Sprite Zero or water). I first noticed my symptoms three days ago when lying down trying to read my book. My arms started to ache badly. Initially taking paracetamol helped a bit but I feel I’ve got worse over the past 24 hours not helped by the travel and lack of sleep!

PMRpro profile image
PMRproAmbassador in reply to Tiggy70

Lying holding a book can be enough to make arms ache - you had lowered your dose and been under stress with the journey out - and even something nice like a holiday is stress. And your diet was different - lots of "goodies" no doubt? Many people become ill while on their holiday from the stress of work. And that journey back has topped it off.

ALWAYS request airport assistance with a wheelchair - that way you ALWAYS have a seat and since you are accompanied by an airport employee you are fast-tracked through security and customs which makes it all a lot easier. You still have to sit around at the gate although some airports have waiting areas for their assistance clients. No thinking "I'll manage" - play the poorly card!

Tiggy70 profile image
Tiggy70 in reply to PMRpro

Yes, I’d always thought of holidays as being restful but since PMR came along it’s all changed. Just packing and getting there can be stressful not to mention the journey back and the unpacking/laundry/grocery shopping etc. I’m very fortunate in that I have a good husband who helps with everything.

Do you think I should up my Pred or wait a few days until I am more rested and back in my routines? Thank you, Tiggy.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Tiggy70

Maybe give it a couple more days just in case it’s steroid withdrawal/holiday stress -and then if no better, hit it hard with 14mg…

Tiggy70 profile image
Tiggy70 in reply to DorsetLady

Thanks.. I’ll give that a try 🌸

PMRpro profile image
PMRproAmbassador in reply to Tiggy70

And for the record - I agree with DL!

Tiggy70 profile image
Tiggy70 in reply to PMRpro

👍thanks

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