k, i may be repeating myself, but last night and this am worst yet since original onset, again ,gp pre diagnosed pmr, until i could see rheumy started me on 40mg pred( yes that,s high), oct 12 then taperedme too 35 after 6 days, then to 30 until i saw rheumy oct 25,which was another 5days, at which time saw her, she said drop to 20 on oct 26, all along i was managing fairly well, little sore time to time, and completely fatigued, only sleeping 4-5 hrs, but not too much pain, so next appt with
omigosh this is still me, was not finished, and text went before i finished, to continue, saw rheumy nov 7, still on 20 that day seemed not to bad, told her that, so she said, stay on that dose couple weeks, if still feel ok, drop to 17,5, very next morning, symptons started to return, shoulders, buttocks, hamstrings etc, now i had been on 20 mg and doing not bad for 9 days, that was a monday nov 7, next day, on 8th started pain back, nov 9 worse again for few hrs morning, and start up again slightly in eve, now in nov 10, terrible night, up every 2 hrs hurting,, went to bed at 11 ish, now up at 4;30 hurting, so my question is, why would it take 9 days before i get side affects, most people feel next day or 2 when tapered to low to control symptons,
What you're doing would redefine the word, "taper" for me. I'd describe it as plummeting your dose. More experienced people here will respond, but I can tell you two things for sure: First PMR doesn't care how quickly your doctor wants you to reduce your dosage. It will subside when it gets good and ready...or not. Second, when you take pred for any period of time, you will shut down your adrenal glands, and then as you reduce your dose too quickly you'll find your adrenal glands are asleep, and you'll only be fit to do the same. You'll have withdrawal symptoms because pred isn't exactly your friend, its more like the enemy of your enemy, and of course you've dropped so quickly your original symptoms have returned.
Why your dose was so high, and what she was thinking in dropping you so quickly I can't understand. Hopefully he/she does.
mark
Cheryl, you will be hearing from the experts I'm sure. However, to share my experience...I required 40 mg to relieve my symptons. I started at 20 mg which helped only slightly. Dose was increased to 25 mg and I had a total meltdown 3 days later. 40 mg and 24 hours later all pain was gone. (In retrospect, with all I've learned, 40 mg was needed due to GCA, without temporal involvement.)
I followed a reduction plan set out by the specialist, which was more conservative than yours, and had a relapse 2 months later. By then I had learned a lot from this and other forums and began following the cardinal rule of no more than 10% reduction at a time. I followed that rule dropping from 40mg on down to 12 mg, albeit with a couple of flares along the way due to not listening to my body.
I became more sensitive to drops at that level and now drop by only .5 mg every 4 to 6 weeks, sometimes longer depending on how I'm feeling.
As for it taking 9 days to get "side effects", it may not be side effects. If I understand things correctly, you may be having a flare. When we drop too quickly it takes some time for the inflamation to build up again resulting in a flare. Unlike withdrawal symtoms which occur quickly after doing a drop.
ok thank you jean, so why do you have a flare when on prednisone, isnt that suppose to manage pmr symptons ?
Pred only manages your PMR symptoms if you are taking enough pred to keep the inflammation at bay, otherwise you need to increase your dose.
Cheryl, have you been very active since you felt better on the pred? That can trigger relapses. Sorry to say, PMR needs to be managed not only with pred but also with you doing your part by getting enough rest. My rule of thumb is, and has been for about a year since I learned my lesson, to get at least as much rest time as activity. And your definition of activity may need to be broadened too. Much as I like getting together with friends I find I need rest from social occasions too. And rest time can also be broadened - why do you think I spend so much time online!?
Hello Jean, It sounds like you have the same as me?
Have been told 'Large vessel Variant' and likewise I am fortunate not to have temporal involment. (but do have one sided tinitus!)
Your info re withdrawal/flares is v helpful. Am wondering whether you aslo use blood results in deciding the dose? .. in my case I started on 40mgs in Feb, am now on 12mgs and think I have a flare for last 2/52, waking with stiff hands/knees. My ESR has fallen back to normal (2) I gather this is a more 'long term' indicator compared to the CRP which had gone up! (8) would value your experience/opinion. thanks