Reducing Prednisolone

I have had PMR for 2 years. Am taking 3mg peed after dancing back and forth between dosages. I have liveable discomfort in shoulders, neck and back, with the help of occasional paracetemol. If I persist through the pain and slowly come off altogether does PMR resolve itself? When first diagnosed although I was weak, couldn't turn over in bed, bend down, very slowed down etc I wasn't actually in pain. Is the cure worse than the ailment? I have read one report that PMR is self limiting and I so dislike taking steroids. Can anyone advise whether the body will eventually kick in and adrenal gland will again do its thing?

[DorsetLady PMRGCAuk volunteer]

Yes it is self limiting - but unfortunately no one can how long it will last - anything between 2-6 years.

The general idea is to find the lowest dose of Pred that enables you to have a decent life - and it doesn’t sound as if 3mg is enough.

The only problem with not taking enough Pred is that it could morph into GCA which can be much more serious illness altogether-so please think very carefully about taking the correct level of medication.

[Hidden in reply to DorsetLady]

Thank you Dorset Lady I will bear that in mind.

[Daffodilia in reply to DorsetLady]

How can you tell if PMR is morphing to GCA - I am on DSNS method at 6 mg (started on 40 mg pred in Oct 2018) - started to get cracking headache at 9 pm each night last couple of weeks- 2 paracetamol fix it - no blurred or double vision- no pulsing blood vessel on temple - no pain in jaw - should I check wit GP or optician?

[PMRpro Ambassador in reply to Daffodilia]

Usually it is developing symptoms that are more typical of GCA than PMR - no other way really. But I think most people would say 2 paracetamol wouldn't have touched their GCA headache! Headache can be a symtom of poor adrenal function too and you are entering that realm.

[Daffodilia in reply to PMRpro]

Thank you - I think may be adrenal thing - getting a low mood that lifts in early hours too

[DorsetLady PMRGCAuk volunteer in reply to Daffodilia]

As PMRpro says -neck, head, eye, jaw issues primarily. And if it is GCA it will not be like any headache you’ve had before - and painkillers certainly don’t! (Kill the pain, that is!)

If you are worried, it might be worth an appointment with optician - if it’s coming on at the end of the day it may just be eye strain.

Many things cause headaches, but should always be checked if they persist.

[Daffodilia in reply to DorsetLady]

Thanks

[survivalist in reply to Daffodilia]

I started on 60mg . Had exactly the same issue on 7mg terrible headache but didn't think it was GCA ( Which I do have as well as PMR ) went back to 10mg to clear it for about a month and then went down 0.5mg a week because I felt fine and I can take a fast taper .

Now on 6mg no headache so staying on 6mg for a while maybe a month because I can just feel some stiffness in my hands ... Can type OK LOL so it cant be that bad. If It was a GCA headache I would not have been able to get rid of it with Parrots eat them all LOL . Even 30/500 Co-Codamold would not shift my GCA headaches This is how I know if its GCA or not with me anyway.

The PMR in my wrists . hands is minor I can remove that with some over the counter pills if I want I just don't bother. It is however a good indicator of the Pred level I should be on.

I think its likely that a lot of people have similar warning symptoms. If you can feel a bit of stiffness somewhere could be you should not taper for a while. I am very lucky I can overcome a flare pretty easy but some have to got up to much higher doses. I think this may be due to listening to the medical profession ! thinking best idea is to get of steroids fast.

This is not a bad idea exactly steroids are not good for you BUT a PMR flare is not good for you either.

The problem as I see it is people are too enthusiastic about tapering without listening to there bodies and reacting to the body as opposed to the statistical general theory that fits only one person Mr Absolutely average in all respects.

The fact is None of us are that person so in the end its a follow you own body job .. Well that's my 2P anyway

[Hidden in reply to survivalist]

😂🤣😂🐦

[PMRpro Ambassador]

Self-limiting for probably 95% of patients. But WHEN it will limit itself and go away is the big unknown. Fifteen years on mine is still here - on enough pred I live well, not on enough and back it comes.

You need enough pred to remove each day's new lot of inflammation. If you don't achieve that the leftovers mount up - like a dripping tap will eventually fill a bucket. And you run the risk of being back where you started.

[Hidden in reply to PMRpro]

Thank you PMRpro. I hadn't realised the symptoms were cumulative. I will monitor.