Pmr remission success

[Amilee]

Hi first of all this site has helped me so much already since I joined, can somebody tell me what percentage of people with PMR achieve remission and get of pred, and also does men or women respond better to treatment .

[PMRpro Ambassador]

The figures vary - one study suggests 60% of patients are entirely off pred by 10 years after half are off pred at 6 years. Other claims are that 95% of patients get off pred eventually. But the 40% in the first case are on very low doses and possibly because of poor adrenal function.

Anecdotally men are supposed to do better in general than women - but that is not proven one way or the other,

[Hidden in reply to PMRpro]

Hells Bells, we could all be dead before going into remission then LOL

[Constance13 in reply to Hidden]

How cheerful!!

[Hidden in reply to Constance13]

Just trying to be funny Constance13...wasn't serious. No reason why we can't all go on for a very long time. I've already exceeded my immediate family, who all died in their 60's....so very sad !!

[Constance13 in reply to Hidden]

I know it was only a joke Staplehurst - but actually you were right as far as I am concerned. I'm 81 so you see what I mean?😂 💐

[Hidden in reply to Constance13]

81 isn't old these days. I'm 73 and consider myself so fortunate to still be here having lost my immediate family all in their 60's. However, I do look after myself as best I can. They all smoked so cancer caught up with them. Except my poor mum who ended up with dementia in her late 50's, then went on to have open heart surgery. I've never smoked or drunk alcohol. But love my choccy !! But dealing with PMR/GCA is a nuisance like many of us are finding. I guess we can't go through life without some health issue. I thought having suffered bacterial meningitis is back in 1994, losing the sight in my left eye that I'd had my fill...obviously not !!

Kindest regards

Anne

[PMRpro Ambassador in reply to Hidden]

I have always said that there is definitely one positive about being dead - nothing hurts any more ... However - it is the reason I am adamant about taking the dose I need for a decent quality of life. If I'm taking it, I want the benefits.

But bear in mind that for many of those it isn't the PMR causing the problem but the adrenals.

[Hidden in reply to PMRpro]

I love life too much to think about being dead. However, if I was ever left blind by GCA I would seriously have to think about it. This is morbid !!

[PMRpro Ambassador in reply to Hidden]

I enjoy life too - but one of the things you learn when you work in healthcare is that there is no escaping it. There is no reason to be scared of it or deny it

[Kendrew in reply to PMRpro]

How true. Like you, I want whatever life I have left to be the of the best quailty, with the least amount of pain so I have the most opportunity to do whatever I choose.......within reason of course. I don't want to waste time dwelling on when I'm going to die. Too much still to live for!

Woken this morning to the sun shining across the meadow, casting the most amazing shadows over a very eerie, constantly floating, ground mist. 🙂

[Constance13 in reply to PMRpro]

I'm not scared of death in itself but, I believe it was Woodey Allen said - I just don't want to be there when it happens.

[jannie21]

I don't now about percentages but I had PMR for 2 years and then went into remission, that was in 2015 and so far I have stayed there. Kind regards Jannie x

[jannie21]

There are quite a lot of members who have gone into remission but who no longer participate on here, time will tell if you are actually in remission have you finished taking pred? I have not had adrenal issues nor do I suffer from inflammatory arthritis so I cannot be any help there, sorry, regards Jannie.

[PMRpro Ambassador]

There have been quite a few on this forum who have got off pred because they are in remission - most of them are away living life although a few hang around to help. I know people in their 80s and 90s who have been on pred for 4 or 5 years and been able to stop successfully and some who have had PMR twice. One small forum I belong to has more people not on pred than people still taking it!

[Amilee in reply to PMRpro]

Thank you all for your reply’s, the reason I asked the question was that I was reading so much on here and it seemed the chances of remission were remote and definitely far away,I have been badly affected with anxiety and depression from diagnosis and I just need something to help me see a future and hopefully sometime without PMR symptoms! Question, 5 days ago increased my pred from 12.5-15mg as I was feeling things getting worse,as soon as I increased I would say my mental state got worse as well is this normal?

[PMRpro Ambassador in reply to Amilee]

Pred can cause mental health issues - so do speak to your doctor. But the whole idea is that you adjust to a chronic illness and achieve a decent quality of life - it isn't just taking a pill. If you have to develop an autoimmune disorder then GCA or PMR are preferable to most as they do mainly go into remission whereas other things like lupus and RA don't. But despite having had PMR for a long time, a long time without pred, I don't get depressed about it - I have adjusted and have a pretty good life. There are far worse things to have ...

[Amilee in reply to PMRpro]

Thank you.

[DorsetLady PMRGCAuk volunteer in reply to Amilee]

My personal opinion - easier to go into remission if you have GCA only.

Not sure if the difference is the disease itself or the high steroid doses - but would guess the disease as those with both seem to have a longer journey than those with “just” GCA.

GCA is viewed as the more serious condition, and it certainly is in many way - but PMR seems to be the disease that lingers.

No concrete evidence - just opinion.