Reducing Pred

[PJPS]

Hi everyone, this is my first post. I was diagnosed with PMR December 2015 and started on 15mg of Pred, then 12.5mg for a while then 10mg for four weeks. Last week reduced to 9mg and after a few days the symptoms started to return, I'd almost forgotten what the pain was like up until this point!

Have gone back to 10mg today with successful relief, Dr says stay on 10mg for a couple of weeks before trying 9mg again, I feel I should stay on 10mg for longer after reading posts on this great website. Think I will need to talk to Dr about this?

[iforget]

Have you taken a look at the slow reduction methods highlighted elsewhere on the site? (tapering Steroids link on right will be the best place to look)

I found it impossible to drop by 1mg increments and have been doing it very slowly by 0.5mg drops. It is taking me ages but it sure beats the up and down thing that some find themselves doing if they try to reduce too much too soon.

Realised this week that I have been on pred for two years and three weeks... sigh

[PJPS in reply to iforget]

Hi Iforget, thanks for replying, I find it useful to know that you have been reducing by 1/2mg instead of 1mg, I realise everyone's different but it is certainly useful to know other people's experiences and thoughts.

I have seen some of the tapering posts, I just need to feel brave to tell my Dr how I would like to progress without sounding like I'm trying to tell him how to do his job.

[iforget in reply to PJPS]

It did take a little training at my GP surgery because they got totally confused over the tapering regime when filling my prescription requests for a combination of 5, 2.5 and 1mg tablets so that I could make up the necessary dose. They got a little freaked because it seemed like I was ordering more and more steroids until I explained that while I had fore example enough 5mg tablets I still needed more 1mgs...now we are all sorted but it was a fun time. Initially I taped a little note to the inside of the medicine cabinet door for the combos needed as I made the various drops so that I would not muddled.

It was the rheumy who agreed that slow and steady was better than trying too fast and having to increase, settle and then try again. Although I thought he was a bit pompous at the start, we are on the same page now and we are led by evidence (how I feel plus the numbers) rather than length of time or expectations and we discuss and agree each step...but at the end of the day it is my body and I live in it so I have the final say

I have already arranged with the local pharmacy that when I get low enough to need to cut pills in half they will do this for me and supply them ready cut

Good Luck on your journey...

[PJPS in reply to iforget]

Thanks for the reply and advice it is very much appreciated, i am going to make an appointment to discuss staying on 10mg of Preds for longer and i will also take a copy of the report you mention. I agree too that its my body and i should have a say in the treatment of it.

[pmrdec112014]

Hi..In my humble experience ( diagnosed Dec 2014) It sounds like you have reduced very quickly. I started on 15mgs for 4 weeks and then managed on 12.5 mgs for 3 days before all the symptoms came back. I then went back up to 15 for another 3 weeks and 4 days. My G.P and I have now agreed to reduce by 1mg every 2 to 4 weeks. He suggested 3 and at the moment I am doing 4 as I believe in all the posts and evidence that say "slowly but surely". So I am still on 14mgs for another week before I reduce to 13mgs. I am telling my G.P what I want to do a bit more now, now that I am more educated in this illness. Its good if you can read as much as you can then fore warned is fore armed so to speak! The pmr and gca book is a must. I can't remember the author's first name its somebody Gilbert and you can buy it from Amazon or the pmr gca society.

Hope you get on ok.

This is a great place to get help.

[PJPS in reply to pmrdec112014]

Thanks for your reply, i have read Kate Gilberts excellent book, and i agree too that this is a great place to get help.

[PMRpro Ambassador]

rcpe.ac.uk/sites/default/fi...

If this is your GP I suggest you print off the link I have just given you and highlight the reduction programme for PMR on page 4. This is a paper aimed at GPs to help them manage PMR on their own better. Leaving a patient at 10mg for a year may be a bit long but 1 month or even 6 weeks is not long enough. You cannot reduce further to find the lowest dose that controls the symptoms until all residual inflammation has been thoroughly eliminated which may take several months, especially for bursitis and tendonitis/synovitis. Then it depends on the activity of the underlying autoimmune disorder - if it is active you will need more pred than if it has died down in the meantime. The pred doesn't affect that at all. Since this is a medical paper from an expert group your GP shouldn't be offended. If s/he is, I would suggest interviewing another one!

Follow this link

healthunlocked.com/pmrgcauk...

to another thread on this forum which describes a very slow way of reducing which pretty much eliminates steroid withdrawal pain and has worked for a lot of people to reduce their dose far further than previously.

[PJPS in reply to PMRpro]

Thanks for your reply and advice, i will definately feel more confident to speak to my Dr more openly and more informed about tapering.

[PMRpro Ambassador in reply to PJPS]

For success it should be a partnership and your symptoms should always be king in the decision - not figures from blood tests. Good luck!