Thank you to everyone who took the time to reply
Posted , 6 users are following.
I will cut down on the excersise and reduce my heart rate I never thought PMR as an illness just an in inconvenience that would go away. Not realising how disabling it was and is. When first taking pred after 4 days the systoms went away, and I felt fantastic, I was told by the consultant that I was to reduce pred by 1mg a month, I am now on 13mg for June and I have noticed the stiffness has started to come back and both shoulders have started to
stiffen. I also take anerdronic acid once a week and calcium tablets twice a day. The consultant led me to believe that PMR does go away. Has anyone out there recovered or are still taking Pred as maintenance. Does the weight reduce once you are on a low dose of Pred (what is classed as a low Dose.
It's nice to know one is not alone and your symtons are not just happe Ning to you.
0 likes, 12 replies
Anhaga margaret89358
Posted
Most people do recover. The people who are talking to you here are nearly always ones who are still on the journey. But there's a discussion on "zero pred" which might encourage you.
Just lower the intensity of your exercise, please don't cut back more than necessary to feel better.
I'm not sure but I think aa may cause pain in joints muscles and bones. If you notice this, other than the usual PMR you're familiar with, please discuss with your doctor.
Cheers - it does get better, and as your dose gradually lowers you will find your muscles become more tolerant of exercise. Patience is the key.
amkoffee margaret89358
Posted
I've had PMR just since September 2016 and I'm ready for it to go into remission now. LOL I am so over this disease. I cannot get my dosage right I am either feeling good or I'm hurting but I don't seem to have a good steady taper. It seems I'm either having a flair or I'm just hurting from tapering. But I hope to get things under control soon. I certainly hope you have better success than I am having. Some people slide right through the tapering and get to a maintenance dose and do great and I hope you're one of them.
Anhaga amkoffee
Posted
Amkoffee, have you considered that some of your discomfort may be due to pred withdrawal? For months I would say to people that this means pred withdrawal and that means PMR. Then one day a penny dropped and I realized that much of what I perceived as PMR is in fact pred withdrawal. They really are identical in the way they feel. But giving in to pred withdrawal, thinking it is PMR, just drags out the process, as I've discovered. This may be no bad thing as it means a very slow taper which is more likely to be successful, but I don't think constantly responding to pain by increasing the dosage is necessarily the right response if that pain is pred withdrawal.
All that being said, I note you say you've had PMR less than a year. What is your dose now and are you using a slow taper plan, like DSNS? When I started tapering to 7 mg from 8 I dropped by .5 mg at a time. For some months I was able to drop a further .5 mg halfway through the taper and thus complete a full 1 mg reduction every month or six weeks. Now I do a full taper with .5 mg, and of course always wait a while before starting the next reduction. Last year at this time I was at 4 mg. I am now apparently stable at 1.5. Can't go much more slowly than that! Along with this, of course, are all the usual anti-inflammatory actions: regular but not extreme exercise, diet, supplements, low level light treatment (which reduces cytokine production), active avoidance of stressful situations....
amkoffee Anhaga
Posted
My most recent taper attempt was at .5 mg every two weeks. That seem to be working quite well until I got sick and was in the hospital and they had me at 50 mg for 3 days then 30mg for 3 days drop me back down to the 10 mg I was on to begin with. At that point I started hurting horribly again. By that time I was no longer in the hospital so I contacted my rheumatologist because I had no idea what dosage I should be on. She suggested I go back to 12 mg for a week then the next week alternate days between 11 mg and 12 mg. That's where I am right now. And I am in incredible pain. To complicate issues I have severe arthritis in my lower back for which I take opiates to control the pain. And the pain has gotten so bad and I'm not sure that the pain is also not being aggravated by the PMR. But whenever I tell my rheumatologist that I can feel the PMR in my back she tells me it's just my back problems. But this past week has been torturous with the pain in my body. I've sent another email to my rheumatologist. I've told her I want to go up to 15 mg. I normally wouldn't even ask her I would just do it. But since I'm on her schedule right now I felt I probably should ask her.
Anhaga amkoffee
Posted
Oh my goodness. What a rough ride! What was the reason for that dramatic short increase, which appears to have really messed up your taper? I think that other things can come into play, Eileen knows a lot more about this and hopefully will comment. If you are stressed by the pain you are already in I wonder if you've got tight muscles? Sems silly but it turns out that a lot of hip pain I had (really quite debilitating, went away with pred but came back as dose lowered) was caused by issues with my spine and the muscles in my back. I'd no idea until my miracle worker physiotherapist sorted it all out for me! Perhaps some of your pain is originating this way?
I wonder if just stopping the alternating of the doses, staying at the higher dose, or maybe 13, for a couple of weeks, would be enough to get the PMR back under control again? Have you considered the dead slow method for reducing?
EileenH amkoffee
Posted
EileenH margaret89358
Posted
Plenty of people get off pred - just perhaps not as quickly as many doctors think! It has been said that about 25% of patients are able to get off pred in 2 years or less - but they are at a higher risk of a recurrence. About half get off pred in up to 4 to 6 years and in the 8 years I've been on the forums I would say most people need about 4 or 5 years. The rest of us need longer but there is no way at the outset to say who will be in which group. It certainly helps to reduce slowly - rushing at it just leads to overshooting the dose you are looking for: the lowest dose that manages the symptoms as well as the starting dose did. That results in a flare of symptoms and often a return to a higher dose and so the reduction takes longer - especially if your doctor doesn't learn from the mistake and STILL says reduce whatever!
In the first year or so the disease process may be very active - and so you may well need to stay at a higher dose for longer than some doctors want you to. If symptoms return you should go back to the last dose that worked, wait a month and then carefully try a small drop again. It doesn't work to ignore the symptoms if they are increasing because all that will happen is that you develop a proper flare. And too big a drop just puts you at risk of steroid withdrawal symptoms which are so similar to PMR you don't know where you are! If you wait they usually go away after a few weeks - but in that time you will have developed a good flare if it is that after all.
Amkoffee speaks of people who just slide through the reduction - a lot of them on the forums are using this approach:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
which really does help.
amkoffee EileenH
Posted
Eileen I don't mean to make it sound that people have it easy tapering down on their prednisone and if I made it sound that way I apologize. I know that a lot of people use the taper that you designed. And I'm sure is a great way of doing it but it confuses the heck out of me. But somebody gave me a different way of looking at it which made it a little easier to understand. So I'm going to try it again. I take a lot of medication and so I use a weekly planner and the DS NS schedule is not based on a weekly plan so I have some trouble making it work with my weekly planner. And that's where I run into some problems. But I'm going to have to try it I think. Because the ways I've tried it obviously not working.
Anhaga amkoffee
Posted
I think you can make DSNS work for you, if scheduling is the main issue for you. I don't have other medications, but I do take some supplements which can't be taken with pred, or sometimes with each other. So that is one thing to organize. Like your other medications. But you always have to take pred, and you always have it at approximately the same time every day. So that is a completely different organization.
I keep my daily supplements in a pill organizer, everything counted out for one week. I'm sure you have your own method of organizing your meds.
My prednisone, however, is organized by my writing down my dose in a little calendar, the kind with a square a day, a month on a page. I write down what I expect my dose to be over the coming few weeks, and can check every morning if I've forgotten. I always write in pencil because invariably at some point I may want to change things slightly. So I never worry about trying to remember whether I need this much pred on Tuesday, and that much on Wednesday, and organizing it with the other pills and capsules and medicine cups of liquid. It's in a separate box in my brain, and has its very own record. And I don't forget it because pred sits next to the pill organizer on my shelf, so I take it when I take my morning supplements.
amkoffee Anhaga
Posted
Well I purposely got one of those calendars for that very purpose but then didn't end up using it. So I will start using it now. Or at least as soon as I start on my tapering again.
EileenH amkoffee
Posted
Anhaga has explained well how I used to suggest people sorted it out. I struggle a bit to understand how putting the new dose on one day and then counting x days at the old dose, new dose for one day, counting x-1 days, new dose, x-2 days and so on is difficult. But then, I've never used a weekly planner.
You can get monthly dosette boxes and perhaps that might work for you. If you sit down quietly with just your pred tablets and just count it out you have a whole month's tablets ready and waiting.
cindy63197 margaret89358
Posted
Hi Margaret,
I just wanted to let you know that some of us do get better. I was on Pred for a little less than 2 years, and now have been off for about 18 months, and am feeling fine. After all that Pred, it has taken a long time to completely regain my strength. Also, the weight doesn't just fall off, but with some diligence, without taking steroids it is more possible to loose the weight.