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?
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Sandy1947
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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.
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.
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.
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.
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
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.
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!! ☺️
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
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!
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.
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!
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.
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!
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
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.
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.
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!
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!
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