Tapering

[bakingD]

Hi good people

PMR since May 2018 so just under 2 years

Pain v well controlled initially for first 6 weeks then not so great rumbling inflammation ongoing pain seemed to change from hip area to now the last 8 months shoulders v painful

Have got down to 5 mg several times then pain becomes worse have finally decided to go up to 10mg which gave fine for the past 3 days and am sleeping better,little bit of pain in the mornings but by lunchtime mostly gone

What should I do now ?stay in 10 for a few more days ??then 7.5 ??then 6 ??

Thanks for all your help!!!

XxDiana

[DorsetLady PMRGCAuk volunteer]

Sounds as if it’s been rumbling for some time and therefore not properly under control - so yes stay at 10mg for at least a week.

But do make sure it’s properly controlled before you think about reducing - 7.5mg might be okay, but then I would take it a lot slower, 1mg a month, even 0.5mg - you need to ensure you don’t go below the level you need - which you’ve done in the past.

As slow taper like this might also be a good idea - healthunlocked.com/pmrgcauk...

At 2 years in, you’ve still got some way to go, so slowly, slowly is the way.

[bakingD in reply to DorsetLady]

Thanks for the advice think have overshot the dose I need by a lot xx

[PMRpro Ambassador]

What changed after that 6 weeks at the start? Did you reduce the dose or did you try to go back to normal activities?

Whatever that initial level of relief was was your guideline for the rest of the journey. YOu should never feel worse at the end of a reduction step than you did at the start. Once you get to a dose that is too low to manage the symptoms you are in trouble if you don;t stop reducing adn go back to the previous dose.

I don't think you need a "few days" - you need to stay there until you are as good as it gets. And then drop 1mg at a time. But this time - listen to your body and when it protests, agree.

[bakingD in reply to PMRpro]

At the beginning I went 20mg - 15-10-5-0 bang symptoms returned then several attempts to go down ,got down to 2 for an MRI scan which showed loads of inflammation in my hips then did 15,10 and a slow taper

Saw Dr Hughes a year ago and was on 5 he said go up to 7 for 3 months as had some soreness in hips since then mainly shoulders

So stay on 10 for a week then 7.5 then v slow am

In such a muddle!!

[DorsetLady PMRGCAuk volunteer in reply to bakingD]

Actually as you’ve had such a roller coaster might be an idea to only try 1mg a time - once things are settled at 10mg.

Sounds a long haul, but it’s not if things go according to plan - and so much better than going up and down!

Good luck.

[bakingD in reply to DorsetLady]

Thanks Dorset lady will go slowly now

[PMRpro Ambassador in reply to bakingD]

No, 10mg until you feel good. Then 9mg, just do 1mg at a time.

That was what happened to me, 15/10/5 taper with 2 weeks at each dose. Within 6 hours of the first 15mg dose I could move and was fine, even at 5mg, until 6 hours after missing the first 5mg dose - and then I was worse than before. I have never been able to reduce far below 10mg without a return of symptoms since. I can't do more than 1mg at a time and have to be really careful. I have been down to 5mg once for about 6 months. Then I flared again. Once you get into a yoyo pattern it just gets worse.

[bakingD in reply to PMRpro]

Thanks will stay at 10 for a bit much appreciated

[bakingD in reply to PMRpro]

Must be really frustrating fir you you handle it really well!!!

[Daffodilia]

I have similar experience - can manage on 6 mg pred but bad pain in neck and ears at the moment in early hours of morning

[bakingD in reply to Daffodilia]

I see you joined Jan 2019 it’s really frustrating isn’t it ??how long have you been on 6 mg for?

[Daffodilia in reply to bakingD]

Diagnosed Oct 18 and on 40 mg - got to 6 mg of pred in December 19 - have tried to reduce to 5.5. and 5 a couple of times including Deadslow method but have to go back to 6 as pain and stiffness too bad