Intro (I'm new here)

[musclesinflamed]

While I started having some symptoms of PMR as early as last November, I wasn't diagnosed with PMR until early January. I was put on 10mg of Prednisone which hardly helped. That was increased to 15mg and then to 20mg.

Prior to Prednisone my symptoms were mostly in my upper arms, some in my hips and legs. I had so much pain and weakness that I could hardly walk, couldn't turn over in bed, had a very hard time dressing, etc. (It should be noted that I'm relatively young for my age as I walk and hike a lot, work in the garden, exercise at the gym and ride my bike up to 20 miles on some days. I also travel to developing countries where I do consulting for beekeeping programs.)

At the beginning of taking 20mg it helped a lot but in taking it 1x/day I had breakthrough pain for about 10 hours a day. I began splitting the dose between morning and night and that worked. I've slowly reduced the night dose and adding the same reduction to the early morning dose. Right now I'm taking 20mg at about 3:30am. Assuming that this continues to work, after a few more days I'm hoping to start tapering down the total intake of Prednisone. I'm thinking and discussing it with my Rheumotologist, that I'll taper 2.5mg/day for a week or so until I get to 10mg/day. At this point, based on my reading and how it goes, I'll slow the taper by 1/2mg/day every 2 weeks.

From what I understand from links shared on this site, when I get around 3-5mg/day I'll find out if my adrenals are up to taking over. I understand that there may be levels of prednisone that won't mediate the pain and I may have to go back up for awhile.

I'd love some feedback regarding my plans and thoughts going forward.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

“Assuming that this continues to work, after a few more days I'm hoping to start tapering down the total intake of Prednisone. I'm thinking and discussing it with my Rheumotologist, that I'll taper 2.5mg/day for a week or so until I get to 10mg/day. At this point, based on my reading and how it goes, I'll slow the taper by 1/2mg/day every 2 weeks’’.

A tad over optimistic methinks…and that’s putting it in a politely British way.

You may be one of the lucky ones, and males do fare better than females with PMR- but it’s not quite as easy as that - even if you are very fit pre illness.

Maybe have a look at this for a bit more info about your illness and how to progress through it -

healthunlocked.com/pmrgcauk...

[musclesinflamed in reply to DorsetLady]

Thank you so much for your reply. I definitely appreciate your input. Yes, I'm trying to be optimistic but with the realization that I may have some setbacks. I read the link you sent and found it very informative as well as realistic. I also read your tapering suggestions and very well may follow your suggestions there as well. (My Rheumy basically has said, "do whatever you think best".)(!) I'll see her in a week and see if she has anything to add.

I am a bit confused about the best time to take the uncoated Preds. Some things say 3-4am and others say 8am. (Other than avoiding breakthrough pain it probably doesn't make much difference until I get into the single digits of mgs) (?).

Again, be aware that I'm very appreciative of your input!!

[PMRpro Ambassador in reply to musclesinflamed]

The 2-3am dosing reduces morning symptoms by not allowing them to get a hold in the first place. The inflammatory substances are released in the body about 4-4.30am. This is based on studies looking at the optimum time to take pred.

I've never understood the logic of the 8am dosing. It is claimed that that mimics the natural production of cortisol in the body - but it doesn't. The peak level of cortisol in the blood happens soon after 8am, depending on what time you habitually get up. If you take the pred at 8am, it takes an hour for prednisolone to reach its peak, 2 hours for prednisone as it must be processed in the liver to form prednisolone. If you take your prednisone at 8am, it isn't at its peak until 10am at best and that has allowed 5 hours for the inflammation to develop and it has a lot more to do so it can take a few hours before you get relief from your symptoms.

[Saffron23 in reply to PMRpro]

Hi PMRpro this makes sense as to why I wake at around 3.30/4 am every morning and have pain in my shoulders, ribs, back. (It wakes me up then if I can’t get back to sleep I get up and take some cocodamol.) My doctor said pred 8am after breakfast but maybe if I took the pred earlier I would feel less inflammation pain? Thanks for making it clear. Appreciated

[DorsetLady PMRGCAuk volunteer in reply to musclesinflamed]

PMRpro has replied re timings….

As for Rheumy, her reply of ‘do what you think best’ doesn’t really inspire confidence, does it?

But perhaps you could take the advice from those on here who have been or are still going through the treatment - and temper your reduction plans.

As is often stated on here, you need to act more like the tortoise than the hare in this race [more a marathon than a sprint] you are on.

[musclesinflamed in reply to DorsetLady]

No, it doesn't and if she doesn't give me sound, medical advice soon, I'll be shopping for a change.

[SnazzyD in reply to musclesinflamed]

Really, the idea isn’t to have “setbacks” at all but to reduce steadily without overshooting the level you need. If you try an overly optimistic reduction and have a flare you are faced with going back to where you were or having a stab at working out what dose in between might have been your current sweet spot. Yo-yo dosing, as it is often termed, can end up with the Pred not being as effective as previous times. The other reason you try to avoid having setbacks is that you can end up with a larger cumulative dose than what you would have done had to stepped down in smaller steps over a longer period with no flares. The other reason for not doing big jumps (eg more than 10% of your previous dose in less that 3 weeks or so) is that withdrawal symptoms can be worse and you can end up not knowing if you are having a flare or withdrawal. Your body has to settle onto a new chemical playing field when a powerful drug is removed and going too fast, it doesn’t get a chance to find the new normal . Relying on blood tests isn’t foolproof if you were lucky enough to have raised markers at all. The reason is that there can be a lag between symptoms developing and the markers showing a significant rise. Overriding all this is what your autoimmune activity is doing and sadly it doesn’t work to a schedule and tends to be years not months. I know we are not the voices of glowing positivity but it’s just old (?) hacks trying to prevent recurring setbacks, extra Pred and disappointment. In the end though it’s your decision! 🙂

[PMRpro Ambassador]

I think you would be a lot better trying that 2,5mg drop and seeing how you get on and don't go to the next drop for at least 3 weeks. It isn't a question of taking a decent dose for a few months and thinking all you have to do is taper slowly to get off pred - PMR tends not to work to timetables and it isn't a short-lived illness either. Thinking either tends to lead to disappointment. Take every step down as it comes and be ready to adapt. It isn't slow if it works

[Bcol]

Not quite sure what planet your Rheumy is on, always thought the "experts" were supposed to lead from the front. Excellent advice and information already given from people with vast knowledge and many years of experience. please, please listen and act on this or I suspect your PMR journey will come across more pitfalls than it needs.

[alangg]

Good advice from everyone already. I would add that when I reduced my dose, it was never more than a 10% reduction, I tapered the reduction over 4 weeks (using DSNS) and then stayed on the lower dose for 4 weeks before starting to taper down again. This way, I could be fairly sure that the inflammation wasn't slowly building up again and that the lower dose was working to control it. If I was in any doubt, during the taper or whilst on the lower dose, I would stop tapering and go back up to the previous dose and then wait another 4 weeks.

It took me over 3 years to get from 15mg (starting dose) to zero but I am pleased to say that I didn't have any flares and never had to go back up to a higher dose than 4 weeks previously.

It's not a race and it's you that is hurting, not the medic!

Good luck.

[Exflex]

Best of luck with the proposed tapering, Most people on here reduce at a much slower rate. In my own case I started on 15mg and rheumatology instructed me to reduce to 12.5mg after 1 month, then 11 after a further month, and thereafter 1mg month aiming to be Pred free after 12 months. The reality is it was a stupid plan, and here I am 39months later still on Pred, not because I want to, but because I have to.