PMR at 52 years

[Pearl66]

I am 52..diagnosed 18 months ago with PMR. My Rhuematologist thinks I prob had Fibro for years. I had a near fatal car crash in 1987 with multiple very serious injuries and nearly a year in hospital. I was 21. I think it all stems from the damage to my body then. What do others think ?

I am on 5 mg pred after a few changes over 18 months or so. I DONT want to be on pred long term.Scares me. Recently we trued dropping to 4 mg. No good. Just 1 mg made a difference. The extreme heat in Australia is difficult this summer. 2 werks of high 30 deg cel. 45 cel expected today. Winter is hard but can extreme heat be a problem also ? Interested in peoples thoughts. I think I am young to have PMR. I take pred late at night to avoid the head sweats during the day. Or I look like I have had a shower lol. I dont notice them during the night. I have insomnia no matter when I take it.

Hope to hear some thoughts. 😁

[1964-karina]

I was diagnosed at the age of 52 am now 2 years on and on 7mg tried 6.5 but had to go back up, who knew half a mg could make a difference! Doctor has told me not to try and reduce for 3 months 😩 just want my chipmunk cheeks to go away!

[Constance13 in reply to 1964-karina]

They will, don’t worry! They go much quicker than the rest of the weight most put on.

It is amazing what 1/2 mg can make a difference, isn’t it?

[Pearl66 in reply to Constance13]

Yes...We tried 4 mg but no good. This flare up may be from the heat or who knows what. Im not particularly stressed ....tht usually causes my flare ups. I had a foot operation end of October and have been up and down since then.

[Constance13]

Who would WANT to be on pred long term - nobody is that crazy?😏

For most of us we feel it would be marvellous if we were free of PMR within 2 or 3 years (Ive been on it for nearly 7 years - and my doctor has informed me I’ll probably be on

it for life). As I’m knocking 80 that probably isn’t toooo long!😀

Take heart, you may be one of the lucky ones.

Kindest regards from Constance

[Pearl66 in reply to Constance13]

Gentle hugs to you x

[PMRpro Ambassador]

I was still 51 when PMR started - I wasn't diagnosed and offered pred until I was nearly 57. I am now 66 and still on pred - in fact I recently had to return to 15mg from 8mg because of a severe flare in disease activity. I have next to no side effects and am able to live a pretty well normal life despite having given up skiing and hill walking.

Whilst it is possible that the accident didn't do your immune system any good because of the stress on it, the accident itself won't have led to PMR developing. It isn't a structural disease. Usually it is a load of factors of all sorts that each poke at the immune system until it eventually turns round and bites you. Usually on the bum unfortunately...

[Pearl66 in reply to PMRpro]

Thanks .Good info

[Suedeshayes in reply to PMRpro]

Hi. What level of Pred are you on now? Is this considered a maintenance dose? And, when you say you have no side effects, does that include tiredness and sore muscles if you overdo it? Lots of questions, but I would appreciate your thoughts. Thanks, Sue

[PMRpro Ambassador in reply to Suedeshayes]

As I said - I was on 8mg but have had a flare and am back at 15mg. I have had PMR a long time and had several flares in disease activity - it is just the sort of PMR I have.

There is no such thing as a dose considered to be a maintenance dose - YOU need what YOU need to manage the amount of inflammation YOUR PMR requires, not what I need or what your neighbour needs. You are looking for the lowest dose that provides the same level of symptom control that the starting dose did. In the early days that is likely to be higher than later on but you reduce slowly in small steps, staying at each new dose to be sure it is still enough, until you notice that symptoms are returning and then you go back to the previous dose that was OK. You can't force a reduction - all that will happen is that the excess inflammation not being mopped up by the pred will mount up until you have symptoms again. You can't fool PMR - you can fool your body into not noticing the change in pred dose and that makes it easier to tell if it is a flare or steroid withdrawal pain.

[Suedeshayes in reply to PMRpro]

Thank you.

[suzy1959]

I got PMR at 52 too. Nearly 7 years later and still on 10mgs. so you are doing very well! With any luck you won't have it much longer but do bear in mind that the average length for it is 5.9 years. Sorry to be the bearer of not so good news! Stay on this forum and you will learn so much that will help you to get through whatever happens.

[Pearl66 in reply to suzy1959]

Thanks Suzy

[Constance13]

You say you have next to no side effects, but you health IS compromised by Pred, isn’t it - otherwise you wouldn’t have had that severe flare (although with what you have been through lately, it’s a wonder you’re not flat out on your bed).😏

Hope things are improving for both you and David.

Constance

[PMRpro Ambassador in reply to Constance13]

No - my general health isn't compromised I don't think. But the PMR is there and has the propensity to flare anyway - so stress will have an effect. And does - just want to go to bed and sleep for a week at the moment! Not much chance of that - OH is being a pain...

[Constance13 in reply to PMRpro]

Serious question. Is he really in pain or just a pain in general?

[PMRpro Ambassador in reply to Constance13]

... being a pain in general. No - think the pain is gone, thank goodness!

[Mjhollywood1]

Hi my Pmr started at age 53 when I was in the best shape of my life! Work out 5 days a week! I work on my feet 9 hrs a day running around traveling all over the world. I have slowed down a lot, instead of boxing I do yoga. Only spinn three days a week and the biggest down fall for me with Pmr is going from a size 2 to a size 6 (pred hair face ) and those sleepless nights!! I read that this will burn its self out???? I am down to 3 mil of predsone !!! Tried actrmerta for 8 months the stuff beat my body up !!! I live in USA Florida. And now stay out of the sun or cover up when on the boat ... I am hoping for a complete burn out of Pmr this year

[Ciar]

I get insomnia, too. Currently sooo tired. Seem to be stuck at 5 1/2 or 6 mg for the past several months. I had chronic migraine for many years, which improved with menopause around 5 years before my PMR started. I honestly don’t think they’re related except that the tremendous stress of all that chronic pain leaves your body a wreck. So...yeah, fibromyalgia and chronic pain.

[Pearl66]

My return of total body pain now is a mystery. Thats why I suspected the extreme hot weather. Its been cooler the last 2 days but no reduction in pain. I cannot sleep without medication and sometimes that doesnt work.Changing from 5 mg to 4 mg then back to 5 might have caused it. I no longer work it would be impossible. I had a nervous breakdown from bullying in my job so I resigned last February. My pain was very bad then. I worked as a case manager childrens therapist in a Family Violence service. I miss it but not Management who made my life hell. I participate in life doing most things...havr travelled etc even when in extreme pain. But I just dont think fulltime work will be in my future

My husband had a work a accident 3 years ago and can not return to work. He has chromic pain and mild abi...but he is not mentally resilient like me..so that is also a bit of a challenge.