I'm after more advice. So I've done 3 days on 10mg (dropping from 12.5mg). I kmow it's not long but am starting to feel some of the old symptoms returning. They're not bad but just wondered if you thought it wise to just go back upto the 12.5mg before it kicks in big time? And then check with doctor about the slower tapering next week ? I've got lot on over next week (and have had for last few weeks so think that's helped me either with the reducing) and don't want to be struggling physically as that'll impact me mentally and need to have my brain in gear too!!
Thanks in advance 😘😘
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Shiba64
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If you can, it would be better to taper in smaller steps. I know this 2.5 drop is considered standard, but it is a sticking point for a lot of people. If you don't have 1 mg tablets why not try a slow taper which helps your body adjust to the dose change over a period of time rather than overnight? There are a couple described in the FAQ pinned post.
Thanks so much!! I wanted to reply to you all in one go but didn't think I could. I feel so much better getting your advice on this. I've always said best people to talk to are those that know 😁Thanks again 😘
I agree with this having read it on here before. I went from 12.5 to 11mg and feel ok on that so far. If you’ve got a lot on then maybe go back up until things calm. As Dorset lady says stress and PMR are not good friends! Good luck
Thanks so much - I'm going to go back to 12.5mg today and then give it time for everything to calm down and hopefully try again. Also get some 1mg tablets so can try going that way and follow the tapering advice.I don't feel terribly stressed but we all know underlying stress is not always obvious and it's weird how things stress you when other stuff that you'd think would stress you doesn't?! Hoping that once I get the stuff that I'm dealing with sorted it'll calm down as well 😁
I'd go back - as much in view of what you have planned. And then go slower - although HeronNS's suggestion of the slowed taper is a very good one - you are only challenging your body with the new lower dose one day at a time and back to the old dose between times:
is my version and you can choose how slowly you go, allowing longer between if you want to go sower. I found my body took 3 meetings with the new dose before it stopped complaining but I never pushed it, if I started to feel the lower dose was getting too low, I just stopped where I was for a bit.
Hi, thanks for the reply. I feel had I tried a few weeks back when I was feeling so so much better then I might have got on better 😁 So much going on with work and sorting my mum out think my body and mind just not in right place to have attempted it.I feel much better with the advice you, DorsetLady and HeronS have given me 😁😁 It's the not knowing what to do that's the hardest. And Doctor did say if it didn't work I'd have to go back to 12.5mg, so at least he is aware it's not easy. I'll talk to him next week and discuss the info you've given me (your links).
I think you have answered all questions there - stress and PMR don't mix well, especially as you get to lower pred doses and your adrenal function isn't responding as it would normally to that stress. With all that going on - you NEED the pred because your adrenals can't provide the spikes they would normally. And the pred is an imperfect substitute - it helps but only partially. I am stuck at 15mg - and I am sure it is 90% stress-related.
HiYes I'm sure it's stress related as I was doing really well and felt quite normal (well not my normal but much better). And then slowly I didn't feel quite so good so shouldn't have bothered trying the 10mg! And this morning I'm worse again so have just took 12.5mg and will stay there until I feel ready to start again but following your guidance info.
How long have you been on 15mg - for some reason I just assumed you were on lower 😊
Since before Covid. Can't remember exactly. I must have been about 13/14 at the beginning of last year when my husband was in hospital and then reduced to 7mg for a PET-CT scan, It wasn't as bad as I expected so hoped I could stick about 10mg but it wasn't to be and the year got worse not better!!! I keep trying to go lower - but the leg stiffness is back after a few days and now my left shoulder is joining in! I have to be able to function - no choice
Ah bless you when we're doing so well. It would that stress does seem to play big part in how this wonderful PMR behaves 😁😁And my first symptoms were the legs first and then shoulders, even though some write ups imply its the shoulders first! My right leg is always the worst and this morning I could so tell I needed to go back to the higher dose.
Guess we just have to persevere but like you say we need to be slow but also think how we feel best etc.
Take care and I'm sure we'll crsck it one day.
I think my computer is having a PMR flare it's so slow and keeps freezing - maybe I could give it some steroids 😂😂😂
Some people have hips first, some have shoulders, some have both - very very occasionally neither. No-one can say there is a specific picture. But try telling some doctors that!
So appreciate your comment. Yes it is all about trying to decrease the pain, however we can. I am stuck at 16mg pred. and because of the fractures I need at least 1 motrin a day, if not 2. I know I am playing with fire but as I said, it is all about trying to limit the pain and live some kind of life. I just keep praying that the side effects of the motrin don't come back to get me. At least I get some relief from the pain. Now, I have many side effects from the fosomax I am taking for bone strength.What a miserable place to be in.
any suggestions? the dr. told me today I will probably come off the fosomax due to side effects. I see her next week. Seems to me any phosphonate is going to have similar side effects. Because I am so sensitive to meds, I don't want one of the 6 mos bone shots. Doesn't leave a whole lot.
The infusions avoid the gut effects but may have the others. I think risendronate comes as a daily tablet too - as well as weekly or monthly which makes stopping an option. It does seem to be better tolerated.
"Postmenopausal Osteoporosis
Treatment and prevention
5 mg PO once daily or
35 mg PO once weekly or
150 mg PO once monthly
35 mg once-weekly dosing copackaged with calcium carbonate 1250 mg for remaining 6 days of week"
Are you in the USA and taking non-enteric coated Pred? If so, should have access to Pred in 5, 2.5 & 1mg tablet. With these concentrations you literally can decrease by 10% of current dose down to 1mg/day by cutting tablets. For example once I finish this transition from 3.5 mg/d to 3mg, my next taper will be to 2.75mg/day and I can do this by cutting in half (along score line, if you don’t own a pill cutter now is the time to buy one as they are very inexpensive and a godsend) a 1m tablet, cutting in half the 2.5mg (that’s 1.75mg) and taking a 1 whole mg tablet = 2.75mg.
But I agree I’d go back to 12.5mg for a week with no pain, then try a taper reducing by 1.25 mg (cut a 2.5mg in half) and just let your doctor know. Hopefully your doctor will go along with it.
Are you doing a stair-step type reduction (12.5mg for 4 wks, then dropped to 10mg and attempting to go 4 wks) or a DSNS method or DorsetLady’s 5 week Simple Taper? I talked my Doctor into letting me do DL’s taper which had worked well for me. Either DSNS or DL’s but get away from that stair-step if at all possible. I’m in Maryland, USA.
Hi. I'm in UK but I take the non coated ones as I actually crush them (can't swallow tablets). But I will ask the doctor if can have the lower strength ones. I went from 15mg after about 4 weeks to 12.5mg. Was on 12. 5mg for about 6weeks and then doctor says 10mg for 2 months but if I flared he'd put me back up. I've just put myself up to 12.5mg as was no chance of getting doctors appointment today! I'll talk to him next week and then also review the different ways and tell him which one I'd like to try. I think he'll be OK about it - though to be fair it's my body and I know myself better than he does 🤣🤣Thanks for your advice too - every little bit helps 😘
I just read your link. That makes perfect sense and reminds when I came off the antidepressants I took years ago. The doctor had me on 20mg of that for months then dropped me to 10mg for 2 months (I never had any noticeable withdrawal symptoms) then she did similar but with one day not taking it and gradually changing week by week to more days not taking it. Within 2 months I had stopped. I know it's not same but principal was. Slowly rather than quickly.Definitely going to tell doctor that's how I want to do it 😁
The first time I tried to move from 12.5mg to 10mg in the way my rheumie had suggested, I really struggled with aches and pains. Kept going with it for two weeks and then found the forum and their fantastic slow taper advice. Went back up to 12.5 for two weeks and then started to slow taper, currently only on the second week of tapering but feeling great. Will definitely be continuing to use that method as I (hopefully) progress downwards in my dosage. Hope it works as well for you 😃
I know this forum is great isn't it 😁 I've gone back to 12.5mg today and then will wait for about a week until start to feel bit better then defo doing the tapering. So glad to hear it's working for you and sure it'll do same for me - it makes so much sense to do it the way it's suggested.Certainly felt the reduction more so this morning and that's only been 3 days of reduction - so I'm glad I messaged last night to ask as felt better just asking 😁
Great forum and such brilliant advice and support 😊😊
Just so you know, I had a doctor who gave me what in retrospect seems to have been very good advice, and fortunately worked for me. I was at 15 for a month or so, all pain gone within first few days, then she told me to drop by 1 mg per week, and to stop if I felt symptoms returning. I know this is shockingly fast, but as it appears 15 had been more than enough for my initial treatment (some people need that much, or more) it worked really well until I got to 9. At that point I went back to 10 and did a bit of research, finding advice and a description of the slow tapering plan online (different forum, but found this one soon after), got my doctor's blessing, and never looked back. I was one of the lucky ones, got to 3 mg by the end of the first year. But I have to add, sadly, that pred started in mid-2015, and I am still here, thankfully most of the time at a dose around 2 mg and only recently dealing with a real flare (increase in disease activity, not pred withdrawal from too rapid a taper).
The goal we are aiming for is the lowest best dose which manages the symptoms. Someday nearly everyone gets to zero, but if it takes years that is okay, especially if the doctor lets us taper at the pace which allows us to reach that goal of lowest best dose without undue pressure to go faster. Best wishes! 🍀
Hi I also had niggles dropping from 12.5 to 10 but after consultation with Dr persevered and on advice have stayed at 10 for eight weeks and all good never returned to real pain just as I said niggles. Tomorrow I drop to 9 so keeping fingers crossed. I do also rest more as recommended by the experts and it does pay off!!! Good luck!!!
Hi I think I'd started to have the niggles whilst still on 12.5mg as had been doing too much I think cos I was feeling so much better! And also did think I don't rest like I did originally. But then going down to 10mg I could really feel the change. And I love that word and always use it to describe when people say are you in pain with it and I say no just either uncomfortable or niggles 😁😁I'm going to wait another week, try resting regularly and then have another go but try the tapering this time.
But well done you for persevering and good luck on the next drop 😁😁
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