Cutting down on Pred

Posted , 12 users are following.

I saw my rheumy consultant on Thursday. He has decided to cut my Pred dose by 5mg weekly from 40mg, so 35 this week, 30 the next week etc, until I get to 20mg. Obviously, it will depend on my ESR and GRP, currently stable at 27 and 7.5.

I'm concerned that the drop is too quick, but suppose at this level, they want it down quickly.

Also been put on Alandronic Acid as of this Saturday.

Signed off for another 3 weeks. Maybe when I get down towards 20, I'll feel able to cope with part time work.

When I was monitored for PMR, my then consultant always cut down much more carefully, like 2.5 over a month.

What do you think of the quick reduction?

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  • Posted

    I am in the same state, wondering what is a good reduction schedule.  I was at 20mg and, over the past 3 weeks, have been reduced to 5mg.  The pains, before pred were at a 9, they went away when I was on 20mg but now I would say, at a 6 level.  I have read a lot and hear that reducing by 1mg at a time has been the most successful.  My question is reducing, how many days should be in the intervals.  I believe the most successful program has been the Bristol PMR plan?  Please let me know what you all are doing to reduce the pred.

    Thanks, in advance

    Tony

    • Posted

      Hello tony, unless your Dr is reducing you quickly because they want to perform tests or some other medical reason then they are reducing you far too quickly and no wonder all your PMR pains have returned.

      look up the Bristol PMR plan and you will see that the recommended reduction for PMR is 15mgs for 6 weeks, 12.5mgs for 6 weeks, then 10mgs for anything up to a year. I was on 10mgs for 6 months. Some patients even find those reductions too much and therefore reduce only by 1mgs each time but they still stay on each dose for 6 weeks. You started on 20mgs so your reduction prior to 15mgs should be 20mgs for 6 weeks, then 17.5 for 6 weeks then so on.

      In the beginning the prednisolone has a huge job to do. Not only must it contain all the inflamation but it then has to control it all. And that doesn't happen over night hence the 6 weeks for each dose. If you reduce too quickly or by too great an amount then there is simply not enough medication to control the inflamation. 

      Once you get down to 10mgs most of us then follow Eileen's reduction plan that can be accessed from this site but in a nutshell it is even slower then the Bristol PMR plan. You reduce by .5 of mg and again stay on those half doses for 6 weeks. 

      You must look at it this way. The prednisolone dose has to fit the level of inflamation, because that level of inflamation is out of our control, all we can do is manage it. Never think in terms of the inflamation fitting the level of prednisolone. It simply doesn't work look that, hence a flare up if the symptoms.

      i believe you should go back to 15 or even the starting dose of 20 mgs and basically start from the beginning again. Get all the inflamation under control and then and only then begin to reduce, by the 1mgs if the 2.5 has proved to be too much. All the best, christina 

    • Posted

      Reductions in PMR don't go over days, they go over weeks, sometimes months. You have been reduced in the way pred is used in acute illnesses - that simply doesn't work in PMR which is due to an acute underlying autoimmune disorder. You need to look for the lowest dose that manages the symptoms - and you may be on that for years, not days or weeks. I have had PMR for 10 years. It is said that 25% of patients get off pred in under 2 years but are at a higher risk of relapse, 50% are off pred in up to 4 to 6 years and the reest need it longer, sometimes even a very low dose for life. As long as the autoimmune disorder is active you will need some pred - no different from your blood pressure being controlled by medication and your doctor won't tell you to stop that because your BP is now OK.

      This link

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      takes you to a thread where the first post contains other links. The next to last is the Bristol PMR plan, which spreads a reduction from an initial dose of 15mg over a period of 2 years, 6 weeks at 15mg, 6 weeks at 12.5mg and a year at 10mg. This achieves a flare rate of 1 in 5 rather than the 3 in 5 found with more usual rates of reduction. Many of us believe the reductions are less uncomfortable and more successful spread over longer to do the reduction, i.e. not from one day to the next, and that 1mg drops are also likely to be more successful, even more so below 10mg. In posts 4 and 5 of that thread you will find my version of doing that, used by a lot of people with great success to get to lower doses than previously. A similar reduction is already being used by a specilaist in the north of England and mine is being looked at by a study group too.

      It is SLOW that wins the race - a normal pred taper as used in flares of RA does NOT work. The rheumy wouldn't ask the RA patient to come off their main drug "because the symptoms are under control" - for PMR pred is, for better or worse, the main drug. You can't just take it away.

      The final link is to another review paper about PMR from the study group looking at my reduction plan - your rheumy would do well to read, mark, learn and inwardly digest the information. Because at present they obviously don't know more about PMR than the fact it responds to pred.

  • Posted

    My blood test this week showed ESR down to 9 and CRP at 5! That's pretty good. Still on 27.5mg Pred. This week at work has been quite hard as I get back into the swing of it. I'm doing about 3-3.5 Hours per day. It has given me a tension headache, but at least my markers are way down. I can cope with a normal headache! And yes, I will try to worry less about trying to be perfect! :-)
    • Posted

      Hi susanne, nice to hear from you. Sorry you've had a bit of a week! Careful with the headaches, if they are tension headaches that's telling you you are under a bit of stress so calm right down. Whatever work doesn't get done on one day will get done the next! Have a calm and stress free weekend. Regards christina 
    • Posted

      Thanks Christina. I keep telling myself that. I need to overcome that habit of "just throw it at me and I will sort it"! Have a good weekend too.

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