TAPER QUESTION

[Sandy1947]

Diagnosed 5 months ago. 25mg to start for about a month. Tapered 1 mg every 2 weeks. Fine until 15mg. Stayed at 14 for 3 weeks then tried to alternate 14 and141/2. Did not work. Back to 15. Feel slightly better after 2 days. Still have neck and leg pains.

Contributing factors...15 people for Thanksgiving (lots of help), supervising transition of new care taker for 94 yr. old mother, cold weather sent me to the moon. Lots of travel starting Thursday through Dec. 17.

Big build up for my question. Rheumy said to stay on 15 until Sunday. I think I should stay until Dec. 17. Next decrease I will use DL’s plan. What do my forum friends suggest?

[PMRpro Ambassador]

I would explain to the rheumy what you have planned - especially as you will get back from your travelling to Christmas and it is winter - and ask what he will allow you to do. The last thing you want to do is get into a yoyo pattern with the dose. If you don't manage with a reduction at any point I'd always say to go back the previous dose that worked and wait at least a couple of weeks, preferably a month before trying again.

But you are going to have to learn pacing to get on top of it and reduce.

[Sandy1947 in reply to PMRpro]

I will tell the doctor I want to stay on 15 for a month and see what she says. What do you mean by “earn pacing”?

Thanks

[PMRpro Ambassador in reply to Sandy1947]

Eejit (me, not you) - LEARN pacing! Must pay more attention...

[Sandy1947 in reply to PMRpro]

Thanks! Will try a little harder.

[SheffieldJane in reply to Sandy1947]

Maybe you should try a little less hard. Just go with your flow.

[Sandy1947 in reply to SheffieldJane]

Good idea! Thanks

[Sandy1947 in reply to Sandy1947]

I meant to say I will not try so hard. Trying to multi task. It’s not working!

[GOOD_GRIEF in reply to Sandy1947]

Multi-tasking is a myth. One thing at a time until either it, or you, are done. Then on to the next thing. Prioritize.

And remember, you can't take care of anything or anyone else unless you're taking proper care of yourself.

Glad you had a nice Thanksgiving.

[Sandy1947 in reply to GOOD_GRIEF]

Thanks. Prioritize is the operative word. Chillin’ after a short walk. Going to the movies this afternoon to see Lady Bird.

Are you tired today?

[GOOD_GRIEF in reply to Sandy1947]

Not really. I've been making these recipes for so long I know them by heart. I learned long ago to keep the menu simple using fresh seasonal ingredients and spices, and to prep the sides in advance so they only have to be warmed in the oven. My Dear One does the cleaning, clearing and washing up as we go along so all that's left to be done when the last guests leave is to put away the china, crystal and silver. We were in our jammies sipping brandy by 10.

[PMRpro Ambassador in reply to Sandy1947]

It doesn't in PMR for a lot of the time. It will come back for certain things - honest!

[DorsetLady PMRGCAuk volunteer]

Hi Sandy,

Would recommend no reducing until you’ve finished travelling. Sure if you explain the Rheumy he’ll be fine with it - should be if he’s any good!

[Sandy1947 in reply to DorsetLady]

Thanks! Will definitely do just that.

[Suedeshayes in reply to DorsetLady]

Hi DL, just wanted to ask you a question or 2 while I see you. I have been at 11 mg for 4 weeks and have gone down to 10. Pains are more noticeable in upper leg and sometimes neck. Should I persevere to see what happens or go back to 11 for a while? I started 10 three days ago so have not given it much of a chance. I was diagnosed in September and had 15 mg, then went down to 12.5, then 11 and now 10.

I’m active and busy during the day, but get tired in the evening.

Thanks, Sue

[PMRpro Ambassador in reply to Suedeshayes]

If it were me I'd go back to 11mg, let it stabilise and try 1/2mg. And try having a rest before you get tired - you will probably find you last longer overall.

[Suedeshayes in reply to PMRpro]

Thank you PM, I was thinking about that. Having a supper party for 10 tomorrow night so have been busy. My day started with aquacise then a 2 mile walk!! But that kind of exercise I do most days. I think my very early diagnosis has helped me considerably.

I think lowering the dose has become more important to me than the symptoms, so thanks for that wake up call. Sue

[PMRpro Ambassador in reply to Suedeshayes]

Just as well this is on speed dial:

healthunlocked.com/pmrgcauk......

READ!!!!! Mark and inwardly digest - as my teachers used to say...

[Rugger in reply to Suedeshayes]

Sue, I got the wake up call too late, when I tapered to 4mg and had a flare this summer! Went back up to 10mg and now tapering very slowly at 0.5mg a month - on 7.5 / 7mg just now.

I wondered how I was going to cook supper for 2 of us last night - but managed it and it was delicious, thank goodness! Hope the party goes well.

Me: PMR 18 months

[Suedeshayes in reply to Rugger]

Thank you for your reply. I do think I’m going too fast and have gone back to 11 mg and hope that I haven’t spoiled how well I had been feeling by decreasing too quickly.

Dinner part was great but starting on the home made plum vodka at the end of the meal was not my best idea!! ☺️

[Annie1001 in reply to Rugger]

Hi rugger, you sound like a carbon copy of me. Like you so pleased to have got down to 4mg after initial dose of 60mg pred. Then a flare with sore upper arms. Am now on 10mg one day then 9/half next day. Will try this for one month before dropping down to 9mg. This seems to be working for you I guess ? Good luck . Annie

[Rugger in reply to Annie1001]

Hi Annie

So far so good! I'm using the DSNS taper over 26 days. See the pinned post on the right of this page 'Steroid Taper Web Application' for this and many other taper plans. It's a more gradual reduction than doses on alternate days followed by a drop to the next level, but still gets you down in about a month, or more if you use a slower taper. However, symptoms are key and if they return, go back to the last dose which worked!

Good luck to you too - we need it!

[Annie1001 in reply to Rugger]

Thank you Rugger for your helpful replies I agree the DSNS seems to work well. I have also read about the spoons. A clever way of letting others know how we feel with these pesky conditions. Keep on rug making, and keep well.

Annie

[DorsetLady PMRGCAuk volunteer in reply to Suedeshayes]

Already been said by my friend!

Plus I think you are trying to do much, even though you may be feeling quite good, you need to be aware of overdoing it! Pace yourself a bit more, try exercise morning, rest then have a walk, rather than all straight afterwards. And if you have other things, like your supper party, then drop one other thing!

[Suedeshayes in reply to DorsetLady]

Thanks DL.

[Suedeshayes in reply to DorsetLady]

Thank you DL. I think that I have to be more realistic about my activities and taper more slowly. When I feel fine, tho’, I go into denial and just do my normal stuff. Going to have a quiet week before I go off to Paris.

[DorsetLady PMRGCAuk volunteer in reply to Suedeshayes]

Hi,

Yes, we all do the denial bit - and then suffer afterwards!

Enjoy Paris, but remember the message we’ve just wittered on about. Take some extra Pred with you. Hope they won’t be necessary, but if they are, you’ll have them!

[Sandy1947 in reply to DorsetLady]

Recuperating from Thanksgiving with some r and r. 15mg for 4 days still have pains in neck and behind my legs. I’ll try one more day. If I’m not better what dose should I try? Thanks

[DorsetLady PMRGCAuk volunteer in reply to Sandy1947]

Try your previous dose initially- hopefully with rest it will be enough.

Take care.

[Sandy1947 in reply to DorsetLady]

Yikes! Initial dose was 25. What is the strategy if I do that? Is it starting all over?

[DorsetLady PMRGCAuk volunteer in reply to Sandy1947]

No meant your previous dose - and see what happens!

Sorry - English not translating to American!

[Sandy1947 in reply to DorsetLady]

Thanks

[Sandy1947 in reply to DorsetLady]

Went up to 15 mg but it did not alleviate old familiar aches and pains so I went to 16mg yesterday. About how long will it take for improvement? Do I keep increasing by 1mg if pains persist? Going to Dallas Thursday.

[DorsetLady PMRGCAuk volunteer in reply to Sandy1947]

There are a couple of options, either increase by 1mg hopefully to find right dose, or go up to 20mg for a few days in the hope that will sort it out and then back down to 15mg.

The trouble is not everybody reacts in the same way, so not one solution suits everyone.

[Sandy1947 in reply to DorsetLady]

Second day of 16mg. Did 35 minutes of Zumba and feel much better! I’ll rest this afternoon with a short walk with my dog later.

I like the options. Thanks for always answering my many questions!

[SheffieldJane]

I suggest that you follow your own wise instincts. It will matter to your wellbeing and not a hill of beans to long term side effects from Pred.

That is such a sweet photograph. You are obviously from good strong stock.

[Sandy1947 in reply to SheffieldJane]

Thanks for the wise words. I just emailed my doctor and told her my plan. Slow is definitely a good idea when I want to enjoy my son and his fiancé in Dallas and lots of holiday parties in Boston.

My mother is tough...owned her own business, just stopped going to the gym but exercises and has a boyfriend. He’s 90. She’s a coogar!

[Rugger in reply to Sandy1947]

Sandy, so that's why you're always dating - trying to keep up with Mum?!

[Sandy1947 in reply to Rugger]

She wins! I don’t know if I could have a bf with PMR. I’m already very independent and impatient (which I like to blame on Prednisone). I have lots of dates but many one and done! As an eternal optimist, I’ll keep trying!

[SheffieldJane]

What a role model!

[morrison]

Follow your body. Taper by DSM. you are in control of yourself. Don't let anyone tell you otherwise. X

[yogabonnie]

I love your mom. She reminds me of mine.. it's a lot of work to care for our mother's and stressful but enjoy. I miss mine!

[Sandy1947 in reply to yogabonnie]

She has a procedure on Monday. Getting home from Dallas around 7 driving an hour and a half to get her and stay there all day! Bringing extra Pred!

So sorry you have the pain of missing your mom.