Hello friends-I am so grateful for all your kind advice and have learned so much- particularly about acceptance. I am curious as to what level of pain relief you all experience with your own personal “right” dose of Pred. I’m currently on 8mg/day and dislike Pred but “needs must”. I have “atypical” PMR and in 4 years I have never been pain free, even when on 20mg. I potter along pretty well on 80% relief and wait for the Pred to kick in at lunchtime. I didn’t tolerate MTX and although on Mycophenolate I’m not convinced that it helps.
Best wishes to you all.
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Vanillaslice
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Personally I have next to no PMR pain when I am on the right dose and really it is more stiffness than pain that I notice in general although if I do stray too low, it is my wrists that protest with pain first. That said - it does mean a pretty high dose of pred by most people's standards.
What was claimed to be "atypical"? In my experience when a doctor says that they are looking at symptoms that well over half of patients would say they had! Not sure what is atypical about that!
Nowadays - well, definitely since 2015 - I would say if you weren't pretty much pain-free at 20mg, they should have tried a higher dose. The Recommendations from then say "the lowest effective dose in the range 12.5-25mg, exceptionally 30mg". You don't stay there - but sometimes you need that much to clear out all the existing inflammation before you can reduce well. And if you achieve that - that is what you aim for. But there are always people who don't achieve total freedom from pain - and what oral pred doesn't always sort out well is myofascial pain syndrome which can happen on its own but is more common in PMR.
Have you ever tried shifting the time of your dose or splitting it? The antiinflammatory effect of pred lasts 12-36 hours and if you are at the low end of that range then the morning pain is a lot worse until the daily dose kicks in. The ideal time to take pred is 2-3am so it is present in the system before the daily shedding of the inflammatory substances about 4-4.30am occurs. The longer you wait after that, the more work the pred must do and the longer it takes. You can also split the dose - about 2/3 in the morning as usual but the rest later enough in the day to extend the effect of the pred up to 24 hours. It can make a massive difference.
Thank you- that’s such good advice and food for thought. I’m so appreciative of your and the group’s advice and support-no matter how good our doctors are, not the same as someone who has the same disease process, and is living with it.
On the right dose I have no pain...don't know if that is true for everyone...as soon as I get any pain I take that as a warning that I have tapered too much (I find that 0.5 mg in a taper makes a big difference)
I have never been pain free, never. After 2 months onset, the rheumy said, “oh, my, you’ve got a bad case.” And I was crazy on 20 mg, didn’t really settle down until I got around 7-8 mg. I know several others with pmr, only 1 is painfree, sending you best wishes, please keep us posted as to your outcome.
I suppose it depends how you define "bad" - apart from the bursitis or tenosynovitis bits which took a few months to settle, all my other pain was pretty much gone in under 6 hours after taking the first15mg. But I struggled to get under 10mg even then and since then it has become more "entrenched" - and it is still there after nearly 18 years.
Pain is such a subjective sense. What I consider tolerable or pain free might be intolerable to you. Agree with DL that your rheumy needs to experience our issues before he/she opens his/her mouth. sounds like you never got rid of the inflammation properly as PMRpro says. I'm one of the awkward types who is stuck back up at 30mg trying to get inflammation back down to zero like in sept. last year and then try to reduce dose again. Good luck Vanillaslice. By the way, that delicacy is now a no no unfortunately.
I was only pain free at the very beginning on 24 mg for a short time. Was like a miracle! However, ever since, with reductions, have had various levels of “pain” and stiffness. Now, after almost 4 years, I am on 3mg daily and suffer from some stiffness in the morning and late evening, usually depending upon my level of activity. I think that everyone has to deal with their own ability to deal with a certain level of discomfort, until it “goes away”. The ones who have been pain free while on their journey are very lucky indeed.
I have had no PMR pain since starting pred. When I reduce my dose, I do get a few days of mild hip pain (which is bursitis, I believe, and started before the PMR) but it goes away (so far!)
I was pain free on 30 mg. Even the osteoarthritis pain and rib pain eased up. But I couldn't stay on that high a dose for ever obviously. I am now on 9 mg tapering snail method (7years with PMR) and have pain most of the time. I think a lot of it is from osteoarthritis so I am waiting for a pain clinic appointment for steroid injections into the trochanteric bursa, SI joint, facet joints, and one for Meralgia Parasthetica. They usually help. I think that I to accept that pain will always be with me and manage it as well as I can. But when the fatigue hits I know that I am in for a flare. Best wishes for a pain free recovery.
As PMRpro says you may need to split your dose. I did last year but had to up the dose to get on top of a flare and eventually took the whole dose back as one when I needed more to get on top of it. I suspected then and still do that the dose was insufficient so it took time. I am having a similar battle again on 30mg but the dose taken at 1-2am seems to wear out by late afternoon and I get symptoms of PMR and GCA until I take the dose again. I have just split the dose to 20mg at 1-2am and 10mg at 2pm after lunch. Hoping to prolong the effect of pred. until night time. \it's all by how you feel and as this changes so frequently it is hard to advise. As you progress with this disease you learn to adjust and accept its will.
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