Tapered from 25 to 20 mg in 5 weeks. Now the rheumatologist wants me to decrease 2mg per week so I get to 10mg by the end of October. Should I even attempt this plan or is it way to unrealistic? I thought I was doing well decreasing by 1 mg per week. Her rush is because I have osteoporosis. I don't want to be miserable and lose the ground I have already achieved. I still have random shoulder and bilateral arm pains particularly the first 2-3 days after a decrease. I could use a little help from my friends!
Tapering Advice: Tapered from 25 to 20 mg in... - PMRGCAuk
Tapering Advice
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Sandy1947
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I would follow your own intuition and listen to your body Sandy. Your way will ensure that you don't have a flare and have to start again. Is that your gorgeous grandchild?
Yes, he's 3. We made chocolate covered strawberries. Thanks for the reinforcement I desperately need. It's easy for me to tell others to follow their instincts but I'm more tentative when it's my doctor giving the instructions.
Hi,
remember...your doc actually works for you.
Its his job to help you figure out how to navigate this PMR maze. At this point, you seem to know more about the process than he does.
That you still experience some shoulder pain seems evidence enough that a slow taper is prudent.
Time to trust that well-earned intuition!! You are right!
Regards, Jerri
Thanks Jerri! I will do just that! I did go to 18mg today. I'll see how that goes. No rush for me! My weak bones will just have to hold me up with a little more Prednisone for a little longer! I exercise, eat properly and am getting Reclast.
I think you make more sense than your doctor. Why 1mg from 25-20 and 2mg from 20 to 10? The guidelines say no more than 10% taper at a time. Would have made more sense to me to have done 2mg from 25 to 19 and then switch to 1mg.
Random shoulder & bilateral arm and groin pain for me the first few days of a taper. Me too. Now just going from 10 to 9.5 I find an increase in fatigue as well.
BTW, I read a bit about Pred bone loss. The big loss occurs soon after starting the Pred and then the % loss slows down significantly it seems. Just an fyi fwiw.
Darling picture!
Thanks!
Hi Sandy,
I can understand that your doctor wants you on lower doses to protect your bones somewhat, but going by what a lot of people on this site say, it is best to do it slowly and not be rushed by a doctor. However, you can but try. If pain gets too bad, dosage could be increased again. What not check out the people who have tried this"tapering"method. I think DorsetLady knows about it. It's a different and interesting way to decrease steroid intake.
Love the new photo. What age is your, guessing, grandchild? Mine is 4 next month and she's so cute, chatty, fun and laughter all around.
Kindest regards,
Sue
Hi sue,
Thanks for your response. I will def follow my instincts and advise of fellow suffers not the recommendation of my "brilliant specialist " from the esteemed NY Columbia Presbyterian Hospital. She is nuts and setting me up for failure.
My grandson is 3 and quite the little New Yorker. We run through the streets of NY to Central Park to beat his parents and baby sister and sometimes I overdo with slight fatigue the next day. I'm trying to be the active grandma.
I appreciate your help.
Wow....Seems like it is better to go a little slower and avoid a flare....if you do have a flare, you will end up starting all over again at a higher dose, which would be worse for the bones!! I've tried to stick with the 10% rule pretty closely...I started at 20 last October and am now at 5.5. I wait each time until I don't have hardly any pain (unless I've just overdone it, which still causes pain!). My reductions at the beginning were higher. Being more careful now! No flares so far. This PMR is such a puzzle! You should sure listen to your body! Just from being on this forum...seems like we know more than most of the doctors!!
The shoulder and upper arm pain could be pred withdrawal symptoms which can occur almost immediately following a decrease, but an increase in pain a few days afterward with other pains joining in means you've gone below the dose needed to control the inflammation. It's a constant balancing act and the most reliable source of info is your body and how it is reacting... so far, so good but no way would I be prepared to risk a flare with weekly 2mg decreases, PMR does not enjoy speedy changes to pred. Always rush rush rush to get patients off steroids ... you could drop for a week as advised, stay there for another week, excellent if it goes well, and you can always go back up a little if it's too much of a drop. Slowly slowly is the mantra...
Good luck, let us know!
I followed doctors' advice and ended up having flare after flare and have not been able to decrease further than 10mgs for 5 years, ending up taking much more Pred than I would have done otherwise. I sometimes wonder how much that bad advice may have caused me to have PMR longer and worse. I haven't had a flare for a year now and am reducing by 0.5 mgs at a time and slowly. If you use the Dsns method of reducing, which is talked about a lot here, then you are much less likely to get that withdrawal pain that you describe. It also enables you to find the level of Pred that you need. The purpose is not to reduce to zero but to the level that your individual PMR needs.
DorsetLadyPMRGCAuk volunteer
Hi,
Absolutely bonkers advice from your doctor. Another specialist who has no idea of actually how to treat PMR. She may well be doing it with the best of intentions regarding osteoporosis, but she obviously doesn't "get" PMR. As others have said if you follow her instructions you are likely to flare, and then in the end take more Pred. PMR stays as long as it wants, and whilst you've got it, you need the correct amount of Pred for YOU.
I feel so much better when Dr. Dorset Lady advises! You should be getting the big bucks! Do you think it's OK to reduce by 1 mg per week (the method I've been using) if I feel OK?
She seems to think I have bursitis in my shoulder since she caused pain when examining me a certain way. I hate the pain of a cortisone shot and may just wait it out because I can endure the discomfort. Do you think I should just suck it up and get the shot?I think it's all PMR. The orthopedist diagnosed tendinitis but it seems to only hurt when shoulder and arm pain is more intense.
All this doctoring is making me crazy!
Hi again,
The main problem with dropping every week is that you're not 100% sure that the dose you're on is enough for you before you drop again.
A flare can take anything up to a fortnight to manifest itself, so if you're dropping 1mg a week, you've gone down at least 2mg too much, maybe more, if you don't realise straight away.
That's why the sensible way is drop once a month, then you are completely certain your current dose is fine before you taper. Nor sure why doctors don't understand that!
You say you've been okay dropping 1mg a week to date, so if you feel okay then continue that, but, and it's a big but (of course) the lower you get the bigger percentage 1mg becomes of your current dose, so potentially each taper is more difficult.
Remember the mantra - no taper should be more than 10% of your current dose.
If your bursitis is as painful as mine, then go for cortisone injection. Mind was caused by arthritic knee not being sorted, walking strangely because if that and therefore throwing the other hip out of kilter!
Six weeks on, cortisone injection, weekly massages and this week acupuncture things are finally on the mend - thank goodness! Or maybe it's because my wallet is lighter!
Thanks for the laugh about your light wallet!
I get weekly massages, have a trainer to work on strength and balance take all kinds of exercise classes and hope for the best.
I appreciate the education about decreasing too fast and complications. Still sorting all this out! I'm traveling next week so I will be cautious about changing the dose. Think I need at least 2-3 weeks on 18mg maybe longer!
Thanks for your quick informative response!
Hi,
Don't reduce before or during travelling - not a good idea!
Wait 'til you get home again.
Thanks. Can't make a move without you!
No, I am a nag, I know! But with the best of intentions 😌
I don't think you are a nag at all. I love hearing from you!
Hi Sandy, Be very careful in dropping too quickly. I think you might be okay getting down to 15mgs reasonably speedily but then take it slowly from there. Flares can be caught but then again once the dragon has been released..... it's a very risky and debilitating business.
I have been there many times and I know from first-hand experience that I have ended up taking far more pred. than if I had behaved myself! It's very difficult as you want to get off pred. as soon as you can, or down to a lower level, so the temptation is always calling. However you possibly run the risk of it developing into GCA which is what happened with me. Of course I can't say it was because I jumped down too quickly but I am sure it didn't help!
Anyway good luck with it all!
Ian
Ian I appreciate your sharing. Flares are the enemy and I will follow the advise of forum friends. I never considered having to go up to a dose of Pred higher than when I started.
I will positively use 15mg as the point to consider one of the slower methods of decreasing. PMR calls us all to try our best to solve the mystery of a personal method of getting off Pred.
Hi Sandy, Be very careful in dropping too quickly. I think you might be okay getting down to 15mgs reasonably speedily but then take it slowly from there. Flares can be caught but then again once the dragon has been released..... it's a very risky and debilitating business.
I have been there many times and I know from first-hand experience that I have ended up taking far more pred. than if I had behaved myself! It's very difficult as you want to get off pred. as soon as you can, or down to a lower level, so the temptation is always calling. However you possibly run the risk of it developing into GCA which is what happened with me. Of course I can't say it was because I jumped down too quickly but I am sure it didn't help!
Anyway good luck with it all!
Ian
pmr-gca-northeast.org.uk/as...
Page 4 this will help you and if necessary, take it to your medic.
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She's crackers.
What IS your t-score? Sorry if you have said but I can't remember.
Yup, she's on her timetable not mine!
T score is -3.2
You do have a VERY low bone density score - but instead of reducing pred in a ridiculous manner, she should be discussing medication in the interim. Cutting your pred too fast and too far will result in a flare of the PMR and immobility. Which is also a high risk factor for osteoporosis. Even I don't have anything against the use of medication when there is a good reason.
I'm getting Reclast next week. I agree, slow decrease makes much more sense. Last thing I want is to start all over again.
How long do recommend staying on 18 or is it hard to say? Traveling next week so decrease will not happen for 2 weeks.
It took a very long time of trying lower doses and finally 25 mg got rid of most of the pain. I am 5'1 and weigh 102. Does Pred have anything to do with weight?
Blood markers are much better. One is normal the other was 6. something. Away from paperwork.
Thanks for all your help. Couldn't do this without you!
No pred doesn't really have a lot to do with weight though small people like you will get a faster result from a given dose than a big man. But some small people need a higher dose than some bigger people.
No reducing while travelling - but as long as you reduce in small steps ever 2-3 weeks is probably fine. There is no hard and fast answer. If your markers are down to normal levels - just keep on the way you are going, But DON'T try to rush it.
hindawi.com/journals/jeph/2...
If that link works it will take you to a study (combination of micronutrients for bone density) which showed that nutrition can improve bone density as effectively as medication. Not to make it too complicated all we really need to do is eat the right food with judicious addition of a few supplements.
Thanks. I just briefly scanned the study. How do we get strontium? Food? Supplement? I am taking Vit D and my levels are good according to results of blood test and Magnesium. Have to get calcium from food only. I will get K2 tablets. Anything else?
I Googled food containing strontium and it's in things like leafy greens, seafood, etc. I don't think we need to be too worried about most of the micronutrients if we eat a balanced diet, just aware of things we don't get enough of from food, like k2 and D.... eat well and get lots of weight-bearing exercise, like walking, etc.
Couldn't get K2 at my drug store. I'll go online. We can do the best we can with diet and exercise. My personal trainer does balance work as well as strength training.
Have a great weekend.
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