My next taper - advice please

[Iloveholidays]

Hello, I don’t post often but read posts everyday. Diagnosed PMR end Dec 2018, started on 15mg for a month, then 12.5mg for a month then 10mg for 5 weeks, have been tapering from 10mg to 9mg using DSNS, have not had any return of pain or stiffness, do have pred side effects as many of you talk about. I will be at end of DSNS to 9mg this week, my question is should I go to 8.5mg or 8mg. I’m tempted to go to 8 as doing so well so far but don’t went to tempt fate and have a flare. Help! Wondering what those of you that have been there and done it would suggest? This forum is invaluable to me as I don’t feel supported by Gp and I am just getting on with it by myself wi5h the help of you all lovely people. Thank you x

[Hidden]

Love your name!

You seem to be going ok so far. Have you any symptoms at all...even niggly little ones? If not i would still be tempted to do a 0.5mg drop. Then just monitor how you feel.

The first time i tapered i hit a wall at 8mg that had been building from 12mg down. It was my pre forum days so i had no idea what i was doing and just followed the 1mg a month my gp wanted. Thats why it's important to account for any symptoms. Its still quite early days so this is the point when you really need to look after yourself.

[Iloveholidays in reply to Hidden]

I have had the odd day where I feel a little pain in upper arms and buttocks but they are fleeting I put it down to withdrawal as tapering ? I also get some numbness/tingly in wrists and hands, but only sometimes. I am currently off work having had my bunion removed which has allowed me to rest which I am know has helped the pmr as I was struggling at work, so I think you a right I should just go to 8.5mg.

[Hidden in reply to Iloveholidays]

I would have a couple of weeks at 9mg and see if those niggles calm down and after having your bunion removed, your body wont recover ghe way it normally would. Buttock pain can be piriformis syndrome which i had for a few months then it disappeared. Niggles a bit walking up hill or standing for too long.

Staying at 9mg until work might save you having to go back up to 15mg at some point. Just keep resting while you can!

[Iloveholidays in reply to Hidden]

Stay on 9mg for a couple of weeks and if ok then start then start tapper to 8.5mg? I will be off work another 5 weeks yet, or maybe I should stay on 9 until back at work because I know I will be stressed about returning and although I will do a phased return it will only be for a few weeks.

[Hidden in reply to Iloveholidays]

Personally if i was in your position i would stay at 9mg to deal with everything, then see how you feel once back at work. You have a few symptoms still so need to let pred do its work. You are doing so well that it would be a shame to rock the boat now. You never know the little pains may ease even more.

[Iloveholidays in reply to Hidden]

Thank you that has really helped

[Yellowbluebell]

Glad to hear it's gone so well for you. I would take it extra slow now because this is the time when most people get flares which sets them back. You have done so well it would be a shame to risk it now. 8.5mg would be my advice but I am sure the others will along in a bit to advise. Good luck whatever you decide to do.

[Iloveholidays in reply to Yellowbluebell]

Yes I think you I right, I think I was thinking that anyway but wanted someone to agree with me! It can be very lonely going through this alone that s why I am so glad of this forum. Thank you

[Yellowbluebell in reply to Iloveholidays]

That is totally what the forum is about. I notice you said you dont post often but we do love to hear how you are getting on even when it's just day to day. Please dont feel you are alone.

[SheffieldJane]

From my own experience I would counsel “ patience”. My body loved 10 mgs and was keen to get back there.

[Hidden in reply to SheffieldJane]

Are you back with us? Or just attached to wifi?

[SheffieldJane in reply to Hidden]

Back in the uk. I had no WiFi in any of our Australian rentals. I am not as addicted as I thought. My eldest daughter thought it was good that I wasn’t steeped in the world of the sick ( psychologist- sigh!). It felt lonely though. However, I dropped painlessly to 5 mgs, so maybe there’s something in it. Early to bed, early to rise dealt with the fatigue and the heat dealt with the OA. 👋 hi!

[Hidden in reply to SheffieldJane]

As you know i take breaks periodically. I suspect just having them all there helped a drop. Forecast snow for you!

[SheffieldJane in reply to Hidden]

My garden birds tell me different. Buckets of rain in OZ, no arthritic twangs though, so tropical rain is different.??

[Hidden in reply to SheffieldJane]

No i cant see snow either...maybe on the tops but not in town. Maybe your body likes the humidity?

[SheffieldJane in reply to Hidden]

I spent ages looking out of the plane window at the lonely snowscape of Mongolia.

Perhaps saunas would help us? I really had very little pain and stiffness. Aussie oldies seem very active - 6 am sea swims in happy groups.

[Hidden in reply to SheffieldJane]

Saunas not allowed for me anymore. I risked it fir a while but no more. I often wished i lived in hathersage. Its not oz but apparently every morning there's a march in bath robes from all corners to dip in the outdoor pool. Dont know if that still happens.

[PMRpro Ambassador in reply to SheffieldJane]

Helped me - though strangely the steam room was better.

[Hidden in reply to SheffieldJane]

Welcome Home Jane 🌷🌷🌷

No doubt you had a great time! xx

[Iloveholidays in reply to SheffieldJane]

Thank you, when things appear to be going well it feels so easy to push it a bit more, but I will take it slow.

[Mary63 in reply to SheffieldJane]

Are you back in Sheffield again Jane?

[SheffieldJane in reply to Mary63]

Yes 🙃🙂

[Iloveholidays in reply to SheffieldJane]

Thank you I will stick at 9mg for now. Welcome back to brightly

[DianeA1]

Hi, I have tapered by .5 mgs since being at 10 mgs with relatively few hiccups. I follow DL's taper schedule. We are all different though.

Dx'd Jan 2018 (15mgs down to 3.5 now)

[Hidden in reply to DianeA1]

Well Done, don’t rush now you’re getting so low! 🌷🌷🌷

[DianeA1 in reply to Hidden]

In fact at this point, I am breaking half of a 1mg then halving the half, so I can reduce by 1/4 mg. My rheumie is wonderful.

[Hidden in reply to DianeA1]

Brilliant, steady as you go

[Yellowbluebell in reply to DianeA1]

I did that with my 5mg. Halved than halved again. So I was able to come down from 15mg to 13.75mg, 12.5mg, 11.25mg and 10mg. Next step.9.5mgx

[Iloveholidays in reply to DianeA1]

That’s very encouraging thank you

[DorsetLady PMRGCAuk volunteer]

Hi,

You will soon be entering the realms of Adrenal glands needing to wake up again, so really the slower the better as far as I’m concerned.

However, having said that I reduced at 1mg from 10mg to 7mg and then changed to 0.5mg tapers. But I did have GCA, and sure I had plenty of surplus Pred still sloshing around.

[Iloveholidays in reply to DorsetLady]

Thank you DL, I haven’t thought too much about adrenals yet as was thinking that would be more around 7mg. Then I guess everyone is different, when that happens does that present itself like a flare? I find it hard to take all the information in, it can become very overwhelming 😳

[DorsetLady PMRGCAuk volunteer in reply to Iloveholidays]

Most people find an increase in fatigue. As I hadn’t been troubled by that particular aspect on higher doses - only pre diagnosis, pre Pred - it was a bit of a shock to the system. Mine seemed to have no rhyme nor reason, if it had I might have understood it better.

For me, I just kept reducing really slowly as I had no other symptoms - it took about 9 months to get from 6mg (when it first started) to 3mg (when the fatigue just disappeared).

And yes, the whole thing is overwhelming at times, which is why this forum is invaluable - most people will have been through what you are going through - just ask!

[PMRpro Ambassador]

One lady used the DSNS to get to the alternate days old and new dose and then, if she was feeling really well after a week there, would switch the second hald to completing the rest of the 1mg. But if she felt at all wobbly she just marked time.

[HeronNS in reply to PMRpro]

I think that was me. I did manage to keep tapering by a full mg every month or six weeks until I was quite low. Ah, those were the days. Marking time at roughly 2 for a couple of years now....

[PMRpro Ambassador in reply to HeronNS]

I'll swop????????????

[PMRCanada]

It’s difficult to know how to proceed at times as so many factors can be at play....pred withdrawal, organic/mechanical health issues that complicate things, stress, and possibly having a flare.

I’ve had a bit of a rocky road below 10mg including breakthrough shoulder pain when I dropped from 8.5 down to 8. Currently had to go back up to a higher dose for 5 days and just now settling back at 9mg.

You really won’t know until you try, but as others have mentioned listen to your body and go slow now that you’re approaching single digits. Just be prepared to make adjustments if need be. Good luck.

[Iloveholidays in reply to PMRCanada]

Thank you, I really appreciate everyone’s advice