Reducing down from 10mg

I have been told not to reduce more than .5mg a month under 10mg and I should have a smooth ride. I am sure some people can reduce faster. It is not a matter of reducing to zero it is to get to a point where the inflammation from the PMR is under control and you are stable. If you can reduce to zero in a year that is pretty good going I would have thought. Around fifty per cent get off pred within six years I have read. Some people are on pred for life if their adrenal glands decide not to leap into action again. 

Hi, Liz,

I started with 19 mg of pred. some months ago. (Can't remember exact time.) Since that time, I have been reducing it by 1 mg. per month, so that I am now at 6 mg.

and ready for another reduction to 5 mg. in a couple of days.

I know that some consider this too fast, but in my experience, I only experience a few odd symptoms for a few days after the reduction, and then everything smooths out. I do not mind feeling a few odd tics, therefore.

As I say, in a couple of days my dose will be at 5 mg., and I expect I may be finished with the pred by or in January upcoming. If so, I will be very happy, as you can imagine.

All of this could change in the coming months, and I will try to accommodate accordingly. But so far, so good.

Lots of luck to you in dealing with ole PMR--

Barbara

Hi Liz! I started on 15 mg in July 2014. I struggled to get down to 10mg, but did so earlier this year. By then I had discovered the dead slow, nearly stop method and decided not to stay on 10mg for a year. This method is working well for me and am now down to 8mg with no flares so far. My understanding is that as this method is so slow it is not necessary to stay so long at 10mg. I hope that is correct. I think I stayed on 10 for an extra week or two because I was so comfortable there but if my PMR will allow me I am very keen to reduce to a point when the side effects begin to disappear. 

I have had no pain for some months, but things like the breathlessness, the fatigue, the dense brain and of course the fat!! are very debilitating and depressing, so I will be pressing on to get down to 7mg over the next 5-6 weeks.

I realise that the fatigue is probably the PMR but I've lumped them alltogether. It is the easiest to deal with. I quite like my naps!

I thought that the 10mg for a year was to really get on top of the inflammation and prevent flares but as I wasn't having any and the method allowed enough Prednisolone in the blood evenly over the weeks and months it should be ok to continue reducing.  

Thsts my story, I hope it helps. Fingers crossed for the rest of the journey.

Sheila

 

Hi Liz, I hate to put a damper on things but Liz the reduction down to zero whether from 15 or 10mgs is no exact science! It can be text book or fraught with complications and of course some of the unlucky ones will always remain on some dose of preds because the pesky auto immune condition is bubbling away in them and not going to sleep which is what we are all hoping for.

the Bristol PMR plan which is where I think you read about the 10mgs for 1 year is part of the gold star treatment method that the authors would like all practitioners to follow. They state 10mgs for 1 year because there is some proof that the longer a patient is on that dose the less chance there is of flares. Well, I suppose that would make sense as by that time, timeline wise we will have had the condition for over 14 months and in many cases the auto immune condition remains live for 2 + years so hopefully a patient would always be taking a tad more preds than needed to keep the inflamation caused by the auto immune condition under control. My rheumatologist had me on 10mgs for 6 months, yet when I attempted a reduction from 9 to 8mgs I suffered a flare. At that time I had just joined this forum and there was an ongoing thread about a dead slow and almost stop reduction plan that was much slower than the reduction plan suggested by the Bristol PMR plan. When I look at that plan now although I am an unqualified clinician I do believe their plan to be far to severe a drop and designed on too quick a drop. 

I started using the dead slow and almost stop method and I am now at 7.5. But even this method is too severe for me and as the method suggests for those of us who experience problems with reducing, always only reduc by .5 a mg, I do and as I say I am now at 7.5.

so let's imagine that I don't suffer another flare and the rest of my recovery is fairytale ok, I will still be on some dose of preds for a further 1.5 years..

but then there are dr's who like to keep their patients on the 5mg dose and or the 1 mg dose for many months in other to reduce the risk of flares, so as you can see this tricky condition keeps us all on our toes and behaves as predicted, unpredictably!

regards, tina

You aren't reducing to zero nececssarily - the pred is only managing your symptoms and you will need pred as long as the underlying autoimmune disorder that causes the symptoms we call PMR is still active. Once it has burnt out and gone into remission you won't need pred - but no-one can tell you how long it will take as we are all different. I have had PMR for over 10 years and it doesn't appear to have burnt out yet. Others are off pred in a couple of years. It is thought that about a quarter are able to stop pred in a couple of years, about half take between 4 and 6 years and the rest of us are long-termers. 

Since I see you mean the recommendation of a year at 10mg - that is one version of many reductions. If you want to use the Bristol reduction plan they include this year at 10mg and find doing that reduces the rate of flares to 1 in 5 instead of the 3 in 5 that is far more common using other reductions. As Sheilamac has said, if you use the "Dead slow and nearly stop" approach there is no need to stick at 10mg for more than the month to 6 weeks that is advisable to make sure your symptoms are still under control at the new dose. 

Just in case - you'll find it in the replies part of this thread:

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

But believe me - if you reduce too fast and let yourself in for a flare you may feel sticking at 10mg for a year isn't too bad after all!