Forced pace of taper
Posted , 20 users are following.
I have a very good rheumatologist. I won't go on about all the way she's good but she is very pleasant and is a very intelligent doctor with a very good memory. But I saw her yesterday for my 3-month visit and she is wanting me to start tapering faster than I am. She is concerned (and rightly so) that my broken ankle broke in 3 places because of my consumption of prednisone. I understand why she wants me to reduce but I'm at 12 mg and I am starting to go down to 11.5 mg using the dead slow method. But the way I have it setup is on reducing by only .5 mg rather than a 1 mg. So she wants me to drop to 11 mg right away and continue to drop by 1 mg as fast as possible. My concern is that 11 mg has been my magic number all along. Every time I try to taper down I to anything below 11 and I start having pain. That's just so very frustrating for me and this couldn't come at a worse time. But I've changed my schedule and today I started at 11 mg and I will do that all week and next week. Then I'm not sure what the schedule is from there. I am using a taper schedule from the website that I found out about here on Patient.
1 like, 34 replies
Poupe amkoffee
Posted
I was able to reduce 1 mg. each reduction until I hit the 5 mg. mark. Then I had to go to .5 on the dead slow method BUT while reducing I didn't hold for a few weeks to see if the new dose would hold and now my CRP levels have risen and I have pain again so I am now increasing my dosage to get to the level of no pain.
Reducing too fast is no benefit if you end up with pain and starting all over again.
amkoffee Poupe
Posted
That is the exact reason why I'm on12 mg a year-and-a-half after my diagnosis. I have had so many things happened to me in the last year-and-a-half some has been related to PMR but most have not. But regardless I have been up and down from where I started at 20 mg I've been down to 10 mg and was hurting so bad I had to go back up. I cannot seem to get below 11 without the pain. And so this time I wanted to do it slowly the dead slow method. And she has let me drive my own taper schedule all along until I broke my ankle. She also wants to do a bone density test on me after I can put weight on my foot again.
BettyE amkoffee
Posted
Had you had a bone density scan before your accident? A triple break is horrendous but just might not be due to low bone density; it might be that you fell in a particularly awkward way. Put enough stress on anything and it will break. Don't remember much physics but I'm sure that's the case. What does she have to wait until you can put weight on your foot? Does our bone density vary in different parts of the body? If not why not do the test now and find out whether it really is so urgent that you reduce pred. faster than you would like?
amkoffee BettyE
Posted
I had a bone density test done 2 years ago. Medicare will only pay for them every two years so I am due for my next one. My first one indicated I had osteopenia. I have been on prednisone for approximately a year-and-a-half. I suspect that I had three breaks because of the osteopenia, the prednisone and the fact that I am very overweight. And that's a lot of weight to put on an ankle in a bad position.
ricky23486 amkoffee
Posted
Amkoffee - If you have a good supply of pills in your medicine cupboard at home, you could avoid the power struggle by agreeing to your doctor's request that you taper faster - but carry on tapering at your own dead slow rate......knowing that it works. Would that be insurrection!
Reeceregan amkoffee
Posted
From my initial 50mg dose last May (PMR and GCA) I managed to get down to 15mg but then things started to come back. I continued struggling at 1mg monthly down to 11mg before I introduced the DSNS method over the month. It was wonderful and I’m now down to 8mg. My rheumy also is in a hurry to get me off the pred as I have severe osteoporosis (not caused by the pred but certainly not helped). At the moment I have a few issues again but I’m also on Prolia which has its own set of side effects similar to PMR symptoms so I’m juggling things. I am now considering dropping by .5mg per month from now on using the DSNS method. Getting off pred quickly is great, but not at the expense of the return of PMR. You know what they say, find the dose that stops the symptoms, stay on it for a while, even if it’s 6 weeks or so, then reduce again. Just watch where you put your feet, look down when you walk(my nursing sister always told my elderly mum to look 2meters in front of you) and walk down steps putting 2 feet on each step sideways....slowly.
amkoffee Reeceregan
Posted
Reeceregan amkoffee
Posted
It’s amazing when you look down instead of out, just how much you notice all the uneven pavers to trip up, all the holes in the ground to fall in, all the uneven levels of ground to do you injury. I silently suffered when I’d take mum to the local shopping centre and she’d toddle off on her walker, looking down and watching her every step. Then right in the middle of the walkway she’d stop dead, look up and window shop, looking around and taking in everything in the shop windows, blocking everyone’s path in the process so they’d have to walk around her , oblivious to the huffs and puffs. God love her, she had no idea she was in everyone’s way, but she was 99 and adorable and I just let her go as I meekly
apologised to everyone because she was more precious to me walking this way than if she’d had a fall from slipping or tripping. I figured they were all younger and more able to get out of her way than she was of getting out of theirs. I just vow now that if I have to look up to window shop I move to the side before stopping. Much like pulling into a parallel parking space. 🚘
EileenH amkoffee
Posted
Bear in mind you have been doing this walking thing for some considerable time and don't think about what you are doing! I don't know what it is like where you live - but few places for people to walk in the UK are level and smooth these days! It is easier and easier to trip. Whatever age we are!!!!
amkoffee EileenH
Posted
Actually I wasn't even walking yet. LOL I was just getting out of my car. Since I was the driver I naturally put my left foot out of the car first and as I put weight on it and as I did my foot slipped on the gravel and I started to fall and tried to catch myself with my right foot spraining it and then finally landed on my left side which has given me a great deal pain as well (but no broken ribs thankfully). Once I fell to the ground the first thing I did was look at my left foot the broken one and I saw that it was going in the wrong direction and instinctively I grabbed it and tried to move it which was stupid but apparently I didn't do any more damage by doing that. Before I hurt my back and then you can ask for hurt my back for a couple of years I would walk around my neighborhood. I used to really love to walk but you do have to keep your eyes on the road in front of you several feet ahead so that you can be prepared so as not to hurt yourself.
EileenH amkoffee
Posted
Mini-lesson on getting out of a car (not just for you, for anyone with any physcial limitations or a bad back and especially as a driver): slide the seat back as far as it goes and turn your entire body and swing both legs out so both feet are out and planted firmly on the ground and the back of the seat is to one hand and the steering wheel to the other before you start to stand up, as if from a chair.
You can get out more safely like that even in a restricted width space where the door won't open fully. You can get swivel cushions to make it easier to turn as well.
diana21296 amkoffee
Posted
My experience with my very nice rheumy is that he wanted me to reduce too fast and be off pred within 2 years....absolutely impossible. From 16mg he has let me do my own reduction and I have reduced half mg every month. But at 8,5mg I had to stay there for 3 months as even dropping to 8.25 made me feel ill.
Have now successfully dropped to 8mg with no pain or flares and I am going to stay on each dose for at least 2 months. This means It will take me 4 months to drop 1mg but if successful I don't mind. From 7mg will do the DS method as the adrenals will probably try to kick in then and it will become harder.
Everyone is so different, one can only go like a tortoise, not like a hare. And the drs don't seem to understand this, although my rheumy did know about the DS method. I have learnt everything I know from this forum. Thank you everyone!
amkoffee diana21296
Posted
My rheumatologist knew nothing about the DS method but after I tried her method I asked if I could do it on my own and she said yes. And since that time I have tried every schedule Under the Sun except for the DS method. So before I injured myself I was doing the DS method and only reducing by .5 mg. But when I broke my ankle my doctor wanted me to get to a lower dose of prednisone. So I've reconstructing my tapering schedule and I'm going to try it first of all at 1 mg instead of .5 mg.
Twopies amkoffee
Posted
amkoffee Twopies
Posted
gina30088 diana21296
Posted
Hi Diana
Dont we want adrenals to kick in?
Why would that make things harder?..
I am worried they wont. I lost so much weght on pred, now gaining with a vengeance while tapering. , so i think my adrenals were lazy..
I am coming cown from 20 weekly at 2.5 increments till i get to 5.
This is because I was. no longer getting relief from higher doses, and experiencing muscle weakness and tremors
Couldn't tolerate methotrexate.
The whole pmr dx I am thinkin not correct after a year of pred, which worked wonders in the beginning then stopped
Thought is ,may be an undefined form of rheumatoid that does not show up in blood work..
I hope all goes well for you and all...
gina