Pain free when tapering?

[OpieD]

Hi, I'm hoping some of you can help me with an ongoing issue. I was diagnosed in September, and after two months of agony ended up in the ER. I was diagnosed with PMR and put on 60 mg Prednisone, which now seems too high. So I've been tapering down, and since I've been below 30 there is always some mild morning pain in shoulders, and now at 10mg my hands hurt for 4-5 hours in the morning. The pain is more than tolerable, and I can work with it, but my Rheumatologist says you're supposed to be pain free. Since pred only stays in your system for 18-22 hours that seems unlikely. I did start taking 5 mg at 2 am and 5 at 8 am and it seems to help. I would prefer a little discomfort than to constantly go back up. Just wondering how many are truly "pain free." Sorry for being verbose.

[Linny3]

I have had pmr for 3 years and have never been pain free. It Seems like a big drop to go to 10mg in 4 months? I started at 20 mg and am now on 12 mg.

I have some pain and stiffness in the morning and evening. It has been much better since I switched to Rayos instead of regular prednisone. I am able to get up and get moving within the hour of getting out of bed. It use to take me about 2 hours.

Good luck with the pmr. journey

[piglette]

Probably very few lucky people are totally pain free, but you should only have as much pain as when you first took the pred and it worked, it should not get worse apart from possibly short glitches when reducing.

[OpieD in reply to piglette]

Thank you kindly.

[PMRpro Ambassador]

The level of freedom from pain achieved at the starting dose is your guide - although your situation has been complicated by the fact you were inappropriately treated at the outset. If there are no signs of GCA then the starting dose should not be above 25mg, without visual symptoms of GCA it should be about 40mg. 60mg is fairly high even for GCA. Very high doses of pred will mask other sources of pain, PMR is felt to be unique in its speedy response to a moderate dose like 20mg.

Although the substance pred is washed out of the body in 18-20 hours, the antiinflammatory effects lasts from 12-36 hours. After 8 hours even a 20mg oral dose will be at less than 5mg in the body - you don't absorb 100% of an oral dose anyway, in some people it is as little as 50%. Pred only works if there is enough to have an effect so if you combine all the possibilities, symptoms may start to return after as little as 12 hours in some unlucky people. Then it may help to split the dose - about 2/3 in the morning and then the rest later, possibly a couple of hours before you would expect the symptoms to return but if you don't have a problem until next morning at some time during the day so the antiinflammatory effect carries over to take you beyond the next dose being due.

However - you weren't ever reducing relentlessly to zero, you were looking for the lowest dose that works as well as the starting dose did and leaves you acceptably able to manage. One risk of saying you don't want to go back up is that there is left-over inflammation which over time will build up and the pain will get worse. Certainly, providing the current level of pain remains stable and you are happy to have sore hands that is OK - it's if it starts to worsen that it isn't.

Despite the starting dose of 60mg, being at 10mg in 4 months is pretty quick - that massive dose won't have any long term effect and it sounds to me as if you may have needed more time to get shoulder bursitis under control before tapering further. If you don't get the sites of inflammation well cleared out initially then it doesn't take much for the ongoing inflammatory process to take those sites into pain territory and you may have a return of symptoms sooner than you would like. I get the impression that most PMR is at its most active in the first 18 months and that may well be why the Quick/Bristol approach works better by maintaining the pred dose at a level that is enough for most people for longer.

It is also possible, of course, that you got used to being able to do things at 60mg that you may have to moderate now - I have some hand pain even now and it is far worse if I use a vacuum cleaner for example, or try to make pastry the old-fashioned way! That justified a new food processor just to make pastry for mince pies since I rarely bake the rest of the year! But I can't carry bags for more than a few minutes, holding 1 litre bottles is difficult (they are fatter than 750ml bottles) and there are various other household tasks involving holding things that leave me very uncomfortable.

To save the pest of waking in the middle of the night, you might find taking your morning dose as soon as you wake and the rest at lunchtime is another solution that carries over to the next morning. And often only 1mg more total dose makes a massive difference. It won't be forever and you will get lower, just not yet. This is very early days.

By the way - I wonder what your rheumy would say to the very high proportion of patients who are NOT pain-free? I can be pain-free - but all sorts of things will lead to a return of pain, many of them are not PMR. How does HE tell the difference?

[OpieD in reply to PMRpro]

Thanks for the reply and advice. I went to the hospital to be diagnosed, as the pain was severe. The 60 mg dose (IV) provided almost instantaneous relief. the pain, although minor didn't begin to return until 30mg, and was just in the mornings. I do admit that I don't take it easy, and will pretty much do things I've always done. A week ago I had to cut down a tree, and was working with a chain saw for 5 hours. That kind of set me back I think, as the morning pain is a little worse, and even returned to one hip. Mostly my hands hurt in the morning, which never happened until recently. My Rheumatologist says that the hand pain is not PMR, but a previously inactive condtion like RA, which is now showing. I'm not sure I'm buying that.

I realize that the pred will mitigate pre-existing pains, as I've had a bad back for years, and that was feeling better. Funny though, as my doctor could never find a reason for the back pain, and I wonder if it could have been isolated PMR all along.

I truly believe my too strong immune system has kept me alive, and hesitate to keep it completely in check.

I have other Auto-immune disorders as well. Hashimotos took my thyroid years ago, I have Dupuytren's Contracture, PMR, and had OCD when I was young, which some physicians think might be an AI condition.

Sorry for rambling, but it helps to get input.

I guess I will keep adjusting the dose, and see what works, but I'm not sure I can expect to be pain free during tapering, and it seems that few are.

Thanks so much for your help. It's nice to be able to discuss it.

[PMRpro Ambassador in reply to OpieD]

I don't have RA - I have hand pain, Your back problems could be myofascial pain syndrome - which is found more often in PMR patients. I speak from personal experience on both counts!!!!

[HeronNS]

As the dose splitting seems to be helping you I think you should give it a little longer to work as it's possible you are experiencing pred withdrawal symptoms. If, however, you find the symptoms start to increase over time, that is when to consider a dose increase. The usual recommendation to avoid a flare is to go up by 5 mg or so, and if that deals with the increased pain (give it a couple or three days) then you wait a couple more days, perhaps a week, and then drop down quickly to the last dose where you were painfree.

Once you've got to a reasonable comfort level with no debilitating symptoms you could cautiously try a slow taper but by no more than half a mg at a time. I think a lot of people stay at 10 mg for some time and that might be wise in your case as you had a rather unusual start to the treatment and it would be kind to your body to let it adjust for a while before starting that slow taper.

[OpieD in reply to HeronNS]

Thanks very much for the advice.