In a quandary.

[Oldnets]

I was diagnosed in January this year with PMR and responded immediately to predneselone. I have been tapering off very gradually and got down to 1mg with two weeks to go before stopping. Unfortunately I had a relapse so increased to 5mg but after 4 days I felt no better. My GP increased to 10mg for 5 daysbut after 3 days I am still feeling terrible. Should I go to 15mg for 5 days? My main problem is that I was on a high dose ofPred for two years in 2014and 2015 for pulmonary fibrosis. Not sure what to do.

[Constance13]

You have decreased pred unbelievably quickly. PMR usually takes between 2 to 6 years (longer in some cases). Where do you live? I know in the USA the so called specialists try to get people off pred asap but it is YOUR body. You know how you feel, what you can do.

Others will be along to advise you.

[DorsetLady PMRGCAuk volunteer]

Hi,

As Constance says very quick tapering for PMR. Unfortunately it’s not a “quick fix” illness - and you have obviously gone well below the level of Pred you actually need to function on a daily basis.

You may find a few days at 15mg helps, but you do need to get back to doctor ASAP and discuss a sensible regime to control your inflammation.

Just as a matter of interest what levels and for how long were you on medication for your PF previously.

[Oldnets in reply to DorsetLady]

I was on predneselone for two years and on such a high dose I ended up with the full face and osteoporosis. It has put me in remission which is very rare. But as you can imagine I am worried about possible increase in side effects.

I don’t see the Rheumatologist until January and my GP is hesitant in increasing too much or for too long. Do you think I could safely increase until symptoms settle and then taper as low as I can, very gradually, until I get to a dose where I manage.

[DorsetLady PMRGCAuk volunteer in reply to Oldnets]

Hi.

Many of us know all about high doses and side effects - me started st 80mg per day, took 4&half years to get to zero!

As Nrs Nails says you really need to start again at 15mg and then taper slowly -you may have thought you were before, but not to us old hands you weren’t.

Slowly means 1mg at a time and every 4 weeks- but only if you have no return of symptoms.

I doubt neither your Rheumy nor you will like that regime, but as you’ve found out his way hasn’t worked! It may work for some, but they probably are the minority.

The fat face is par for the course, and you can take extra medication if required for osteoporosis.

You need to get your PMR under control at the moment.

Good luck.

[Oldnets in reply to DorsetLady]

Thank you for your reply.

[Oldnets in reply to DorsetLady]

I was on a very high dose for some time, I can’t remember what it was, but tapered very slowly over two years. I was also on oxygen for the first year.

I have followed the advice of everyone and have been on 15mg for three days which has definitely reduced the pain and stiffness but I am still feeling extremely weak and unwell. How long does it take to feel well again after a flare Up?

[DorsetLady PMRGCAuk volunteer in reply to Oldnets]

Personally not sure .. I never had one.

But most say it varies, depending on how bad you were beforehand. If the pain and stiffness has reduced then that’s good, but the rest may take a little longer.

When it’s the original dose then most stay on for a month to ensure all the built up inflammation is under control before consider tapering.

With a flare then maybe 2 weeks may be enough.

But you do need to get guidance from doctor.

[Oldnets in reply to DorsetLady]

Thank you for your reply.

[Hidden]

Hi Oldnets

Wow, that was fast & l can understand your Doctor’s keen to get you back down ASAP but to be honest l think you need to go back to your GP & almost start again but come down a little more slowly & give your body chance to recover.

Best Wishes

MrsN

[Oldnets in reply to Hidden]

Thank you for your reply.

[SheffieldJane]

That is awfully fast though Oldnets ( glamorous name 😙). Your body knows Pred doesn’t it. What does your doctor think with your history? I think I’d get comfortable again, otherwise we may as well not bother.

[piglette]

As the others say you have reduced very quickly and it is not a great surprise you have problems. I think I would start at 15mg and reduce slowly this time. Are you being pushed in your reduction by your doctor, they are always very keen we should get of steroids but do not offer any alternative it seems? When you say you were on a high dose on 2014-15 what sort of dose was that? I must admit I cannot see why it should make any difference now though.