Need help. Pred up or down??? I joined here a few weeks ago but don’t write much. Just read and learn for the most part. I said before that I have PMR diagnosis. Started on pred 20 mg. And dropped every two weeks until I reached 6. Started feeling ill again. Dropped to 5 and almost back to square one. Went back to 10 and then 12 for a few days. Now back to 10. I have been here for a few weeks. I don’t know what to do. I feel quite good As far as mobility goes. Not in pain except for burning in thighs and soreness under butt so can’t sit for long periods of time. Went to Walmart yesterday and had to find a chair to sit down while husband shopped. This is not me. Now I am not sure whether to up back to 12 or 15 for perhaps a better result, be happy that I am basically okay, or carry on with a small decrease. How good does one have to feel before dropping? No matter where I drop to I don’t need blood tests to know I still have it. I can still tell from the way I feel. Does this make sense to anyone?
Thanks for any input.
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Chopin002
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The pred, whatever dose you are at, doesn't cure the PMR, it just manages the symptoms to allow you a better quality of life until the underlying autoimmune disorder burns out which it does in 95% of patients sooner or later. But "sooner or later" is the crux - it can be anything from a couple of years to 10 or more, the median time you will need pred is just under 6 years so this isn't a short wander in the park, it is more like a marathon for most of us.
However good you felt on 20mg was the guideline, that is how you should feel at the end of every taper step. Dropping every 2 weeks down to 10mg was probably OK, but after that you should have slowed down a bit. And when you felt less well you shouldn't have reduced again but gone back to the previous dose where you had felt well and waited a month or two to be sure it really was still enough. Unfortunately once you let the inflammation flare like that it is often more difficult to get things under control again.
But you have to do you part too - the fatigue and flu feeling are part of the autoimmune disorder, not greatly affected by the pred, and you must pace and rest appropriately.
I'm not sure that going to a higher dose will achieve a lot if you have few PMR symtpoms. I'd suspect your burning thighs may be from trying to do too much, developing muscle soreness and not getting it resolved before doing more activity. It takes a lot longer when you have PMR than you would expect it to normally.
The sore butt that is stopping you sitting could well be piriformis syndrome involving the sciatic nerve and that may also be contributing to the thigh pain though usually that is down the side of your thigh. The pred doesn't usually help that - maybe discuss it with your doctor. There are PT exercises that will often help piriformis syndrome and some doctors will use muscle relaxant injections if it is bad.
You will know you still have PMR yes - but you won't necessarily know if the dose you are on is controlling the inflammation, you can feel rubbish even when that is OK and that is all that can really becontrolled as I;ve explained above. Did you feel better at 12mg than you do now at 10mg? If you didn't there is little point in going back to that, you just have to come down again. But do try to not get into a yoyo pattern with the pred dose. That just leads to trouble.
Thank you. You and blue heron seem to be such experts on this forum. Great that you are willing to reach out to any and all of us. I feel so uninformed, but I am a quick learner. I did call my rheumy and have quit the actenol and have been given some slack on my pred dose. I think for now I will just stay at 10 for a long time and rest. Thanks to your feedback I am now taking charge and asking more questions instead of just following a chart by the doctor.
And when you resume your taper, make it not only slower, but more shallow.. Never reduce by more than 10%. And since you've been up and down a bit, you might want to reduce by only 0.5mg at a time.
You're not going to make PMR go away any faster by cutting your dose too much or too soon. It will take as long as it takes, and you need to take enough pred to keep the inflammation under control. Remember, just because you feel better doesn't mean you ARE better. It means that given a regular day or series of days, you are taking enough pred to keep the inflammation in check. Up your activity, or your stress, or add in a cold or other infection, and you're out of balance again.
As a general rule (because we're al different), withdrawal pains should not be debilitating, come early after a reduction, and should decrease over a week to 10 days. Flare pains, or pains from not enough pred, usually come on after a a week or so, and increase as the days go on, as inflammation accumulates.
Hope this makes sense to you.
Oh, and while taking pred, you really need to be monitored more than once a year. Hope your GP will be taking regular blood tests..
Thank you. I will try the .5 reduction when I am ready. I am allowed to go for blood tests every two weeks if I need to . The CRP level rises when I get worse. I don’t even need the blood test as I can just tell now.
Yes, you may be able to tell, but your doctors are more likely to believe test results than they are your testimony.
I keep a daily diary that records how I'm feeling, the meds I've taken, the dosages, the temperature and the barometric pressure (I am particularly sensitive to the comings and going of storms), what I've eaten and drunk, any unusual activity or stressors... It has helped me see my own patterns. I did this way back when I was suffering from migraines so I could track my symptoms and triggers. It helped a lot.
I also record my test results on the date the samples were taken.
It only takes a few minutes a day, and it becomes a resource when I'm seeing my doctor(s).
Certainly for me a drop in barometric pressure and the pre-storm humidity don't just increase pain it increases fatigue. It does for arthitis...hence feeling rain in your bones...
Doesn't need to be a storm for me - a change in the weather is enough and about 3 days ahead of rain. I'm more accurate than the weather forecast - not that THAT is difficult ...
My daily record isn't as detailed as yours, however I do keep one and record meds. my condition etc. I do believe it helps. To-day I go to see my GP and will take a modified record , with questions for him.
Yes, I am really starting to understand the whole thing. Of course I don’t like it, but there are worse things out there. The flare was so scary to me, but now I understand what happened. Tapered too fast. It’s kind of like “ who let the dogs out ?”. Once they get out takes time to get them back in.
I started on 20mg and reduced by 1mg every six weeks, managing to get down to 2mg in eighteen months before getting a flare up and feeling pretty desperate. That was when I found this forum and took the advice about upping the Pred by a decent amount - 5mg - and reducing again slowly. Am now on 4mg and, although it seems like a backward step, I'm feeling well again - despite lots of other health issues I even managed to clean the stair carpet yesterday!
Hope you feel better soon and keep in touch - there's always someone to help.
Thank you. I am just starting to feel better thank goodness. I had no idea about the slow reducing plan until I found this forum. I am sitting on 10 for a while as the flare was so depressing and difficult to overcome. I will reduce slowly when I feel ready , not by a date on the calendar.
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