Prednisone taper....
Posted , 10 users are following.
Hello everyone, well I started my taper. After 16.5mg for 3wks ( and fairly pain free), I started 15mg 2 days ago. It is 1:09am on Friday and I can barely move my rgt arm! I've got so much pain in my shoulder that when I reached to pick up a cup just a minute ago, I almost dropped it. If I understand it correctly, 16.5 to 15 isn't really an excessive drop. My question is, (mind you my doc's on vacation), should I just try to power through and accept this is part of the process? Is this how a "normal" taper goes? I'd love to hear any of you fine folks experiences. Thx for listening.
0 likes, 10 replies
mary19068 lynda62707
Posted
Hi lynda62707
You may have 'Rotator Cuff Syndrome'
Our shoulders are made up of complex muscles and ligaments and steroids can weaken them thus causing pain. There is also a condition called 'Shoulder Bursitis' which is an integral part of PMR...if the pain gets too troublesome and you experience a lot of pain when using your arm i would up your pred and see if the pain goes away and wait until your doctor returns. I experienced shoulder pain but i was way down to 4mg by then but i carried on as you know... not that you should do that as you are still at a high dose....you will probably experience all sorts of weird and wonderful things on your pred journey....hope this helps lynda my thoughts are with you...
EileenH lynda62707
Posted
Part of the reason we go on about slow tapering is to try to avoid this sort of event! Yes, theoretically this is a 10% reduction and shouldn't really result in steroid withdrawal pain. But some people are very sensitive to changes in dose. A return of pain that happens immediately, within hours of dropping the dose is most likely to be steroid withdrawal, flares tend to take longer.
In the replies part to this thread
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find a description of a very slow reduction which has allowed many to get past this sort of event. You challenge you body with the new dose just one day at a time - one day new dose, several days old dose, one day new dose, one fewer days old dose. Your body gets used to the idea more slowly and doesn't panic at losing its usual dose.
However - as Mary suggests - it may not be the PMR, especially if it is just one shoulder so do bear that in mind. I would immediately go back to the old dose and see if it settles. Don't wait, if it is a flare it will get worse and be harder to get under control.
lynda62707
Posted
So, it's 9am Friday morning. I awoke this morning with excruciating pain in my shoulder and now it's also in my knee. I'm about to go back up to the 16.5mg. I feel like a wuss. However, I'm gonna listen to you all and go back up for the time being. Any suggestions as to how long or where to go from here? My next reumy appt is 10/3 when my doc's back from vacation. However by then I'm supposed to be down to 12.5mg😕.
EileenH lynda62707
Posted
If you aren't down to 12.5 by then you won't be down to 12.5! But if you have pain at 15 - I don't see how you will get down another 2.5 in 10 days. Do you?
lynda62707 EileenH
Posted
No, not really. You've got a good point. Any suggestions about when to start a taper again? Maybe this time to 16 or 15.5mg?
mary19068 lynda62707
Posted
I would go to 15.5 mg for 5-7days if the pain has not abated go back up to 16mg stay at 16mg until you see your doctor who will be due back by then.....hope pain is not too bothersome...
lynda62707 mary19068
Posted
Thanks Mary. I already took the 16.5 a couple hours ago (and yayyy, shoulder feels Much better!) It's amazing how sensitive I am to this stuff! I'm not sure if that's a good or a bad thing😕. In any case, I think I'll try 16mg tomorrow and for the next wk there after, then drop to 15.5 till I see the doc. Wish me luck!
Anhaga lynda62707
Posted
EileenH lynda62707
Posted
Once your current pains are gone/stable where you were before you tried the drop. But really - the smaller you make the drop, at least alternating old and new dose for a week to soften it a bit if you don't want to go the whole hog on slow, the easier it will be overall. It may SOUND slow - but what is slow is dropping too much and having pain and having to go back up. Plus that adds in another problem - yoyoing the dose seems somehow to make the next reduction step harder. No-one knows why, but it is something we see again and again and is something real experts in tapering have said for a long time.
The trouble is, doctors think everyone is the same. When you use pred for other things you drop by 5mg or even 10mg at a time and it seems to work. It very rarely works dropping more than 2.5mg at a time in PMR once you get to about 15mg - and for some people that problem sets in at 20mg. It's fine to try the doctor's suggested big steps down - you may be one of the small number for whom it is fine but if it fails twice then SLOW is the only way without feeling awful and even having a proper flare and being back to the beginning. And THAT isn't the way to get off pred or even to a lower dose.
lynda62707 Anhaga
Posted
Thanks Anhaga! Yes, that makes good sense to me. As I said earlier, I went back to the 16.5 today and voila...my shoulder and knee are considerably better tonight! It's really quite amazing to me. I just hope me taking things into my own hands will not mess things up with my doctor!! Before she left for vacation, we were just starting to build up a good rapore!