Posted , 11 users are following.
Today I got my dosage down and I hurt. I would like to continue this dose to see what happens. Can you give me some idea how long I should give it before upping my dose?
1 like, 17 replies
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Anhaga amkoffee
Posted
How big is your step down? Are you following a dead slow taper because that would mean only one day with the reduced dose, then a day back to old dose, then two days at the new one, old dose for a day, then three days new dose and so on, until you turn around and start having more days with new dose. If it's all one step I think you'll know within a very few days whether it's only pred withdrawal as the pain shouldn't get worse, or not much worse, before it starts to get better. Others have undoubtedly actually reduced this way (I didn't once I got to 10 mg, finding slight pain began to build up slowly but steadily over about nine days when I tried to get to 9 and that's when I started the dead slow method) and can give you better idea what to expect. I think the standard idea is that, generally speaking, pred withdrawal happens quite quickly and PMR builds up more slowly.
amkoffee Anhaga
Posted
Well mine certainly acted quickly so hopefully this is just withdraw and I will get better within the next few days. I don't know how long I can last with this pain though. And of course it doesn't help that I have lower back pain and RA pain and OA pain. I am just one big ball of pain these days. And to answer your question I went down 1 mg. I'm going to give this till tomorrow I think and if I hurt this much tomorrow then I'm going to try the dead slow method because I have not ever tried it before. And there is a website that you can set up your schedule on. I think I even heard about it on Patience. Com. I have never been able to get lower then 11 mg. And today I only took 10 mg.
EileenH amkoffee
Posted
That is the point of the Dead Slow approach - you have one day at a time to see how your body reacts. If the pain goes the next day when you go back to the dose you were on it is probably steroid withdrawal and your body will take some time to adapt. I find I feel "different" for the first 3 or 4 times I try the new dose and then my body obviously decides it's OK, tomorrow will be back to normal, and makes less fuss. That's why I started it as 1 day new dose, 6 days old dose - I was very sensitive to changes in dose and can't cut may tablets. If you can cut them and do just 1/2mg that may help too.
amkoffee EileenH
Posted
I'm taking your advice and I have started the dead slow method. I reset my daily planner to my old dose and then I will begin the dead slow method. There is a website that I think I learned from someone here on this site that will help me with the schedule. And it has the dead slow method as one of its schedules. So I'm starting with my old dose and moving on from there. I am able to cut my pills in half and so I have set up the schedule to change by only .5 mg at a time.
EileenH amkoffee
Posted
All the best! The website/planner app was done by someone on the HealthUnlocked site. I can't see the point - a calendar and a pencil works for me and I really hate tech! As long as it is easy to redo when it does pear-shaped that is all that matters!
amkoffee EileenH
Posted
I like to do things using my devices such as my cell phone and my tablet. And my son even bought me an echo dot for Christmas. So I have to say that this schedule is really working for me. I tried the pencil and calendar way and I just got so confused.
Do you mind if I ask you a question? I am still in horrible pain. My back hurts but it always hurts. Could it be from PMR I just don't know. But the thing that's the worst is my legs from the top to my toes they ache. This started yesterday when I lowered my dose. Even though I took more prednisone in the evening it never got any better. And the narcotics I take for pain for my lower back isn't touching this pain either which makes me think that it might be PMR pain. But I took the same dose today that I was on last week and the past month and not hurting. I sent an email to my GP this morning but I don't know what she could really do about it. My only idea is that it could be PAD but I really doubt that too. I clot really easily and so I always have a concern of that. I am confident this is not a DVT because the pain isn't exclusively in my calves and it feels nothing like the one time I had a blood clot in my leg. And not only that it would be very unusual to have it in both legs simultaneously. I was just hoping maybe you had some ideas or suggestions.
EileenH amkoffee
Posted
I'd be inclined to feel it was maybe coincidence - but it is something you should report. The only thing I can think of is neuropathy due to poorer blood flow to the nerves if there was a bit more inflammation. If there is a problem in the abdomen, higher than where the femoral artery forks to supply each leg, then you would have the same sort of problem in both legs. But that is just a stab in the dark - I'm not suggesting that at all.
amkoffee EileenH
Posted
ptolemy amkoffee
Posted
amkoffee
Posted
I know it's already almost 7 in the evening here but I cannot take it any longer not when there's help to relieve my pain. I just took 1mg prednisone and I'm pretty sure that's going to stop the pain. Then I went on the website I talked about in my earlier comment and changed my schedule to do the dead slow method. And I started it at 11mg and I'm going to have it go down by only a half a milligram at a time. I just so wanted to get below 11mg.
Silver49 amkoffee
Posted
It would be better to do half a mg at a time rather than 1mg and the dead slow method means your body has time to adjust. I found it worked for me and I'm about to try dropping again by the same method. I reached 1.5 but my body protested and I am back at 3 and have been for a few weeks. I'm not sure if I'm ready for 2.5 yet but I will know quickly before I overshoot. That is why this method works so well. Best wishes.
ptolemy amkoffee
Posted
elizabeth40672 amkoffee
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amkoffee elizabeth40672
Posted
Thank you Elizabeth. I have had to return to 15 mg more than once. Most recently I had an injury that was causing me extreme pain in my rib cage so my GP upped my dosage to 60 mg a day. And from there I quickly tapered back down to 15 mg. Once I got to 15 mg I slowed down. But I have never tried the slow method. And I have since found a schedule online for that method and I'm going to instigate it now. I hope this helps for me to get below 11 mg.
jean39702 elizabeth40672
Posted
Hi Elizabeth, I'm in the same boat with you. Except that I had managed to get to 10 mg and had to jump back to 12. Also stayed there for 10 days and now heading back down with some trepidation.