Life after taper

[Andymurph]

Hi all,

After religiously following a slow taper I managed to get down to zero a couple of months ago.

I had little or none of the usual symptomatic neck, shoulder and back pain and I really thought I had reached the end of my PMR journey.

Not so. I don't know how it crept up on me, but I think it was my knees that were first to start stiffening up after about a week on no prednisolone. after two weeks I found I couldn't turn over in bed, and, by the third week, I found I couldn't get out of it.

Approaching a month and getting out of a chair was becoming nigh impossible.

Forgoing the dubious pleasure of a GP telephone consult, I started back on 3 mgs and after a couple of weeks I'm back to some sort of normal.

So my question is - do I stay on 3mgs ? or do I restart my taper to 1mg where I genuinely felt ok ?

[DorsetLady PMRGCAuk volunteer]

I would stay on 3mg long enough to give that dose time to mop up the accumulated inflammation - 3-4 weeks maybe.

As you about 3 years since diagnosis obviously there’s still enough life in PMR to need more than the 1mg you were on. It was probably ‘just’ enough, but only just.

See how it goes, but don’t be in too much of a rush, 3mg is a very low dose, and recently Prof Dasgupta said he sometimes keeps his patients on 2.5mg for a year.

When you do start reducing again, try 0.5mg a time....body doesn't notice the change so much easier........but if your PMR is still active (as proven) it needs what it needs....and in your case it might only be 1mg. I think most people would happily sit there for a while.

[PMRpro Ambassador]

3mg is fine - but 1mg is better if you can get there, You aren't the first nor will you be the last to discover that 1mg is plenty to keep the lid on it - zero isn't on though!

[SheffieldJane]

I would stay on at least 3 mgs whilst the winter does its worst, then have another bash when Spring is here again.

[Blomps]

Strangely I have been reducing down, but also using steroid sparing Methotrexate 20mg injections every week. I got down to 1mg from 40 over 2 years , but after about a month on 1mg Prednisone all the pains and stiffness were flaring again. I'm back on 5mg Prednisone again and at present very comfortable. I'm not in a hurry and will slowly reduce in a month again.

Good luck......we need it

Blomps

[Dcctrains]

Dear Andy, I would stay on 3 mgs for about 3-4 weeks. Let your body get back to some semblance of normality. If you feel you then need to taper then only 0.5mg reduction every 2 weeks. However, I have been on 5mgs for many years now and apart from flares, it appears to be working. I have tried to taper and PMR always returns with a vengence. No harm in trying though. Good luck

[tangocharlie in reply to Dcctrains]

I wish I'd just stuck at 5, caused nothing but problems a few years ago forcing myself below that and off Pred. Now I'm back up to 20. I believe that if you don't properly control the inflammation it just gets worse - PMRPro's dripping tap analogy, even a few drops a day not mopped up eventually becomes a puddle .... My rheumatologist, one of the most enlightened ones around when it comes to PMR, agrees. If I ever get down to 5 again I will stick there. Maybe even higher. Of course we're all different, might just be me.

[Ventdunord]

I would suggest you to start on 3mg and gradually reduce to 1mg and stay at that level for as long as necessary. I can't see any downside with taking 1mg for the foreseeable future . Think of yourself as being one of the more fortunate sufferers. After 8 years I have repeatedly tried to get down to 5mg from 6 / 7 mg without success and so am pretty much resigned to taking thaat level of Pred for life.

[Ladyoak]

Hello Andymurph, I had just the same but I think I came down way to fast from 30 mg to 5 mg in under 6 months. I was so well on 8mg, 6mg not too bad but when I hit 5mg , it was terrible. I was too scared to meddle with my prescription so did contact the doctor who suggested I stay on 6 mg for much longer now, possibley a few months.

It's like a rollercoster ride isn't it? I am still learning things as only diagnosed in June this year. I am not 100 % but the pain just feels like I have been for a long walk and so compared to how I was back before my diagnoses when I couldn't even brush my hair, I am prepared to try and live with it for a few months.

I was amazed at what a difference just 1mg extra made. Hope you get this sorted and would love to see how you are getting on.