tapering

[Pollygoat]

Hi am a new member diagnosed with PMR I n August. 20mg of prednisolone now down to 8mg. Tried coming to 7mg but pains and aches returning, back on 8mg now as consultant suggested. Any suggestions on diet/exercise would be be appreciated. Thankyou

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Plenty of info on diet in FAQ, but main advice is to cut carbs….

healthunlocked.com/pmrgcauk...

See this re exercise -

healthunlocked.com/pmrgcauk...

And as your post is entitled ‘Tapering’ ’ maybe this - as would say you have gone just a bit too low… and although you have gone back to previous dose, it may or may not work - so if it doesn’t please come back for more advice…

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Pollygoat in reply to DorsetLady]

Thankyou

[DorsetLady PMRGCAuk volunteer in reply to Pollygoat]

As you are new to HU maybe have a read through this as well -

healthunlocked.com/pmrgcauk...

[Pollygoat in reply to DorsetLady]

Thank you for that. Both helpful and reassuring 🙏

[PMRpro Ambassador]

Hi and welcome!

You do know that you aren't tapering relentlessly to zero but are titrating the dose to identify your lowest effective dose? It sounds as if you have reached that destination for the moment - it doesn't mean you won't get lower, just not yet.

Diet - cut carbs, especially processed ones and added sugar. Some people need to cut more than others to manage weight or blood sugar levels - trial and error there I fear!

Exercise - what you can manage without feeling worse next day. It is likely to be considerably less than pre-PMR and pred and you will need to start from absolute beginners levels on alternate days at first - the rest days are equally as important and you use them to assess the effect of what you have done and how to proceed. Doesn't have to be heavy sessions in the gym - walking and aquafit are as good as anything,

[Pollygoat in reply to PMRpro]

Thankyou for tjat excellent advice. Wish I had known about healthunlocked sooner. 🥰

[PMRpro Ambassador in reply to Pollygoat]

You aren't the first person to say that!!

[tangocharlie]

You've been lucky to get down to 8mg if only diagnosed 6 months ago. Read up all the great info people have posted to learn about getting that 'sweet spot' of enough Pred to keep control of the inflammation. You will probably come across the 'dripping tap' analogy. Your body produces daily inflammation like a dripping tap and the steroids mop up the puddle. If you don't take enough steroids to mop up the daily puddle/bucket the overflow causes a flare and problems. This is a fantastic forum, lots of info accumulated over the years and always people with lived experience to answer your questions

[Pollygoat]

Thankyou would you think diet plays a big role in the reduction of inflammation

I tried a gluten free diet for a while but I don’t think it helped. Im on a very healthy regime all round and fit and healthy otherwise good weight for my height. Just reached the Why did I get it stage … would just love to know. I don’t have much stress in my life

I did get vaccinated for Covid but how many others did and don’t suffer from PMR.

[PMRpro Ambassador in reply to Pollygoat]

Lot more than just stress involved. There is a high degree of genetics - a set of genes that predispose you to developing PMR/GCA rather than another autoimmune condition. Then it is an accumulation of insults to the immune system through life and eventually something is the final straw that tips the scales, but it might be illness, trauma of any sort, physical, mental or emotional, environmental or chemical factors. The Covid jab, Covid itself, the flu jab, flu, the shingles jab, shingles, anything pretty much that has a go at the immune system, good or bad, so no single thing can get the blame and no two patients have the same back story.

Cutting gluten also cuts carbs and that can be a factor in inflammation but gluten per se is given a lot of bad press it doesn't entirely deserve. UPFs and all their sugar and other rubbish in them probably don't help. But the biggest thing cutting all that is it may help avoid weight gain. Some people find they notice if they have been cutting carbs and then splurge oon "treats" which seems to suggest sugar isn't good for them - but everyone is different.

[Pollygoat in reply to PMRpro]

Thankyou so much for that info PMRpro. Interesting re genetics as my sister remembers our Dad having a similar condition in the 80s.