Finally down to 0mg

[Middleton22]

It's approximately 6mths since I last posted. At this time I was on 1mg and due to go on holiday but took your advice and didn't start tapering to 0.5mg until my return at the beginning of April. I have now been Pred free for 2wk and feeling okay although a bit stiff first thing in the morning but disappears within minutes when moving around. Fingers crossed everything will be fine and I am still taking it easy and not going mad in the garden (although the weather is not very good). Thank you to everyone who has given me advice on my PMR journey. It was a good day when I found this forum.

[DorsetLady PMRGCAuk volunteer]

Good to hear, fingers crossed for you.. 😊

[Middleton22 in reply to DorsetLady]

Thank you. Looking back I wonder if the start of PMR was brought on by a very stressful year. I lost my mum in 2021 unexpectedly and I had the job of sorting out her estate and organizing everything. I then started with pain in January 2022 and diagnosed a month later. I know that stress can play a part.

[DorsetLady PMRGCAuk volunteer in reply to Middleton22]

Yes it certainly can, but unfortunately sometimes we cannot avoid it…my GCA definitely followed a very stressful few years. I thought I was coping okay, but it obviously took its toll.

Ce la vie. 😊

[PMRpro Ambassador]

Well done - I do hope it lasts a very long time!

[Middleton22 in reply to PMRpro]

Yes....me too. Keeping fingers crossed

[Alliekat65]

that's wonderful.

[piglette]

Fantastic. It takes the adrenals a little longer to get completely up to speed so you will get better and better!

[Bedwell]

so heartening to hear! Am on 1.5 after 3 years and reducing ala Dorset Lady. Thank goodness for this forum. .., in Uk weather very depressing. I’ve just turned the heating on!!!!!

[Bedwell in reply to Bedwell]

Ps . I did have an awful day after reducing to 1.25. For one day. Couldn’t function at all. Next day relatively ok. What a journey?!?! 😘

[Washbrook]

That’s so heartening to hear. Thank you for posting. I’m currently reducing from 2 to 1.5 DSNS system is it’s going okayish. And I’m about to turn the heating on too!

[Middleton22]

Thanks for all your comments. Still pain free but energy levels not back to normal yet. Will still persevere and hopefully the adrenals will kick in soon.

[DorsetLady PMRGCAuk volunteer in reply to Middleton22]

Just be aware that adrenals can take up to 12 months after finishing pred [longer for some] to be back to 100% capacity. You may feel and be fine on a day by day basis, but an unexpected event may upset the applecart... and then you realise they aren't firing on all cylinders.

[Middleton22 in reply to DorsetLady]

Thanks DorsetLady. I didn't realise it could take 12mth for adrenals to get back to normal. Will take each day as it comes and make sure that I rest as much as possible. Fortunately I have a wonderful husband who helps with all household chores and gardening. The only thing he can't do is ironing. Fingers crossed.

[DorsetLady PMRGCAuk volunteer in reply to Middleton22]

For some it can… must admit I never had an issue.. but maybe because I took a long time to reduce from 3mg to zero so they were in reasonable nick, also never had any highly eventful episodes after coming off Pred.

First eventful thing was a trip to NZ 15 months after finishing Pred followed by a knee replacement 6 months later.. maybe something in living a boring life after all ..😂🤣..