Saw Rheumy: Advice on his Taper Plan :

Bones, joints and muscles
1

Hi, After waiting over 3 months to see this rheumy, he gave me 20 mins of his time and a tapering plan and said see you in 6 months.

Some history:

Told I had PMR in April 2016, started on 20mg Pred, then month later signs of GCA up to 40 mg of Pred for a month. Started to taper got to 35mg. Then they found I had breast cancer, so since they would give me a boost while under they left me on 35. Had operation on 5th October, all well.

Started to taper again and got to 32.5 then saw this rheumy yesterday. He was not happy I was still on a high dose and gave me a taper plan:

He was familar with PMR etc ( Scottish ) and had himself been on Preds, so knew what it's like.

My question is to all you Pred whispers what do you think of his tapering plan? I value your input.

Also as of the 15th of this month I start 5 weeks of radiation therapy every day. So I know it will not be a easy time, but I am happy to at last be tapering down.  

HIS PLAN :

On Now 32.5 mg Prednisone I will start on 1st December.

1st December Down 2.5 to 30mg for one week

8th December Down 2.5 to 27.5 for one week

15th December Down 2.5 to 25  for one week

21st December Down 2.5 to 22.5 for one week

28th December Down 2.5 to 2o for one week

6th Janurary Down 2.5 to 17.5 for one week

Then it will be tapering 1 mg for every 2 weeks until I get to 10mg .

Then when on 10mg I will be tapering 1 mg for every 4 weeks and keep going like this.

He also said to go by the calender week.

He also said I should be taking 100mg of Aspirin a day ? which I will talk to my Dr about next visit.

Thank you for any advice and input :  Dea

2

In my opinion, any taper should involve no more than 1 mg. per month--four weeks. Anything faster (to me) is asking for trouble.  

I don't know why you're told to take 100 mg of aspirin a day and will be interested to hear what your doc says during your next visit.

3

Tapering from high doses varies, but generally the taper down from high doses is fairly quickl  Once down to 10 mg. it's about 1 mg. reduction per month so seems like your Dr. is right in the arena.  You may have trouble at any point during the reductions and may have to go back up again to the last dose at which you felt ok.  Most of us do.  How this interacts with radiation, I don't know but the taper sounds reasonable.  I was told to take 81 mg. of aspirin a day because GCA is a clotting disease.  100 is slightly more but not much and sounds reasonable as well.  Am sorry for all that you are going through.  Any one of those things is bad enough.  Wish you much luck.

4

You are having a very tough time, my heart goes out to you. I did the same reduction and got on fine with it, the 2.5 gives very little in the way of nasty side effects and if you get them, they are easier to deal with. I would give it a go and hopefully it'll work nicely for you. I don't know about the Aspirin as wasn't prescribes it. Hope all goes well for you with the reduction and with the radiation and your continued recovery.

5

Dea,

i believe that your Rheumy has given you the right taper plan, at these high doses and that Anapp has made very good suggestions if you have any problems during reduction.

If you feel fatigue, during and after radiation, it is perfectly normal, and I would ask the radiation doc if the fatigue could be exacerbated by the PMR and/or the prednisone

you are going through a difficult time, and you seem to be quite strong.

please be very easy on yourself, and keep your stress level down.

Take one day at a time.

we will be wishing the best for you, and I, for one, would love to hear of your forward progress.

barb 

 

6

I feel once you get to 20mg stabalize then reduce slowly. Most people cannot reduce that fast after 20mg.

I'm sure Eileen will come with her opinion.

Mariane

7

You certainly have a rough road to travel and my heart goes out to you. As for the taper, it may sound alright to some in theory, however, I can't tell you how many times I've pencilled in a reduction scheme to cover future weeks or months, only to erase it a few weeks later!! Unfortunately, one can't predict how the body will respond to all the things going on in one's life.  We are all different and our responses to reduction are all different.  I started at 40 mg and followed the 10% reduction rule, but learned the hard way at around 12 mg that I had to slow down to drops of only .5 mg using the Dead Slow Nearly Stop regime. 

Listen to your body, be flexible, and don't hold yourself to a ridgid schedule.

I too am on low dose aspirin. It was recommended a few years ago by a personal friend and seasoned nurse practitioner as something possibly beneficial and not harmful for anyone over 50.  The nurse practioner who confirmed my diagnosis of PMR when I was 65 confirmed the usuage.