Predisone withdrawel

[Southmead]

I was diagnosed with PMR in April, 2014. I started off with 20 mills of Pred a day. During the last 6 years, I have got down to 2.5 mills a day, but never been able to get off Pred completely. I have found that with 5 mills a day, I can keep the symptoms at bay, but once I get below that I started experiencing the stiffness in the shoulders and neck, etc I then go back up to 10 mills for few days. The PMR eases off, and I go back to one 5 mill pill a day again. I can't seem to withdraw from Predisone completely. I thought the average PMR period was 5-6 years. Does anyone how long this really last? Thanks, this community has proved most helpful in learning other peoples experiences, invaluable.

Peter D

[Hidden]

Hi Peter, 5mg is a very hard dose to get beyond for lots of people. For some it's the lack of adrenal function leaving them feeling terrible. For others, it just that the PMR is still active. I am afraid it is like asking how long is a piece of string for some people, around 5% have a chance of being on pred for many years. I have seen people on here with 15yrs or more on pred.

I presume you have tried doing a dead slow nearly stop taper? But ultimately you need what you need as far as pred goes. Research has shown that low dose pred, especially 5mg and under has fewer side effects than Dr and patients believe, with the exception of cataracts.

Here's the dsnsctaper just in case. Good luck...I am just about to start year 5 and was at 7mg and just flared and doing 10mg myself for a week so I have an idea how you feel.

healthunlocked.com/pmrgcauk...

[Southmead in reply to Hidden]

Thank you, the link is very useful. I pasted it for continued reference, very helpful. The last stage of tapering to nil is proving elusive.

Thanks again this site is invaluable. I have learned more than the doctors told me.

Peter D

[Hidden in reply to Southmead]

I have learned a lot too- it's scary to think some people with PMR and GCA don't find the forum and rely on drs who know little or aren't transparent about the conditions and the treatment.

In the pinned postd there is a post by pmrpro about pred withdrawal. That might prove useful too. If you can't find it just let me know. 👍🌻

I found it...

healthunlocked.com/pmrgcauk...

[Southmead in reply to Hidden]

Thanks, all good for reference !!

[alangg]

Hi Southmead,

I started on 15 mg in December 2017.

I've managed to get down through the 5mg 'barrier' by using the DSNS taper and then staying on the new dose for a long, long time before tapering again. Most times, I have experienced a recurrence of symptoms towards the end of the taper. If, after a week or two, the symptoms are still there I go back up and wait but usually I have found that they actually disappear. Only when I am comfortable on the new dose do I think about tapering again.

So my approach is - take it slowly, gently exercise the aching bits and tell yourself that it's not as bad as it was at the beginning. If it is, go back!

I am now (April 2020) about to finish the taper from 1/2mg to zero and hope that I can stay off the Pred but am equally prepared to go back up to 1mg if I need to.

Good luck!

[Southmead in reply to alangg]

Thank YOu

[PMRpro Ambassador]

The AVERAGE duration of management with pred is just under 6 years - but that still means some need pred for longer because many need it for a shorter time. The same work that found that figure also found that 40% of patients still required a low dose of pred after 10 years.

medpagetoday.org/rheumatolo...

Are you really trying to reduce by 2.5mg at a time - because that is what it sounds like. If so - that almost certainly isn't helping. Nor is yoyo-ing the dose to manage symptoms, Sticking at maybe 3 or 4mg might get a better result. This isn't steroid withdrawal that you are describing though - that is the body's reaction to too big a drop in dose too quickly, it will improve over time. When it gets worse it is usually a sign the dose is just that bit too low for the current disease activity.

[Southmead in reply to PMRpro]

Thank you very much, this is extremely helpful!

[Gaz227]

Hi Peter , your journey is like a mirror image of mine , virtually same time scale , I also have that 2.5mg threshold I can’t get below in doing so sets everything off . I haven’t gone back to 10, usually 5 for a few weeks brings it back under , but currently on 3.5mg think I’m going to hold tight at this level till the pandemic calms down . Good luck and let us know if you come up with any methods to try and get off the tic tacs . 👍

[Southmead in reply to Gaz227]

Thanks Gaz, it's comforting to know so many people are experiencing the same as me. This site has proven invaluable in understanding the dosage factors of Pred, I have learned so much, more than the doc told me. I'm determined to beat this bugger, no more tic tacs 😊

[Gaz227 in reply to Southmead]

It’s the positive attitude that will triumph in the end Peter . Try not looking to far ahead one step at a time, or Mg in our case . All the best 👍

[cathygalbraith]

I have had PMR for eight years my ESR is still 50 and I am still on 7mg at moment may need to go up. I have never got below 7mg.

[Southmead in reply to cathygalbraith]

Thanks Cathy, we are all struggling under the same issues. My threshold seems to be 5 mills, still better than the 20 when it started.

[Telian]

I was diagnosed in March 2014 with GCA, PMR followed some 18 months later. I too couldn’t get below 3mg ( after 4+ years) so happily stayed on that dose for 18 months and the PMR seemed to be in remission.

Then had a flare and went to 5mg and recovered - struggled to get back to 4mg but did - then another flare and on 10mg but can’t reduce at the moment. My body’s having none of it.

I wonder why, when I got so low, that I can’t repeat. Have had stressed though so I accept that’s the reason and will do the necessary at the right time.

[PMRpro Ambassador in reply to Telian]

The original 6 weeks with a pred taper was a doddle - 2 weeks each of pred at 15,10 and 5mg. I was fine with 5mg - until I had a few days without pred having stopped taking them under orders from the rheumy. I never had as good a reponse to pred again, getting along at 10mg OK but not brilliantly. Then I had a major flare, first because of a dodgy batch of enteric coated 5mg pred, and then after being put on methyl prednisolone because I had moved here and that is what they use. I have really struggled to get below 10mg since then - did manage 5mg for a while but it didn't last.

[Telian in reply to PMRpro]

Interesting - think I’m adjusting. though not happy, but it is what it is and second time around doesn’t seem to respond to the pred as before.

I have no Rheumie appt yet and won’t for a while, it’s my arm that makes the most noise. GP says I probably need 12.5.

Thanks for the reply.

[PMRpro Ambassador in reply to Telian]

Just one arm? Maybe that isn't entirely directly PMR and might respond to targeted treatment?

[Telian in reply to PMRpro]

My thoughts entirely but it got so

painful and not seeing Rheumie in desperation saw A&E, Physio and GP who all said it’s Rheumie’s department! I know that unilateral isn’t classic PMR but the increase in steroids has virtually got rid of the pain.......

[PMRpro Ambassador in reply to Telian]

Oh I know the feeling!!!!

[Purple-Owl]

Thanks for the link. I found it extremely useful. Like many I have got stuck trying to reduce pred below 5mg.