Reduce dosege

Just wondering when I spoke to my dr last wk i n eed to stay on 15 but if pain ok on 11th will go down to 12.5 and so on every few wks/months or whatever it will be, but I've read that if the drop doesn't work they go back up for few days then try again, so what I'm asking is do u just go up and down on yr own according to how yr feeling or is it a dr that does that. I'm in wales and I know different countries do things differently. I just a bit confused how u know how much to go up or down. Maybe it cause I'm only day 12 on pred and still learning where some are on yr 5 so got a lot more experience of what to do

[Koalajane]

Hi, I am in Shropshire. For the first 3 or 4months I saw my doctor who managed my dose and then she said she thought I could cope with dose change. I do get an annual review

[Hidden in reply to Koalajane]

So after 4 months of dr managing yr dose now u take what works for you or do u speak to dr again if u need to change it

[Koalajane in reply to Hidden]

I take what works for me.

[piglette]

If I had problems, I personally would go back to the dose I last felt OK and then possibly reduce at a slightly lower rate. Some people can manage 2.5mg drop from 15mg to 12.5mg and some people like myself cannot. When you get to 10mg I should not reduce more than 1mg every month. In fact I reduce at .5mg being a tender little flower!

[Mary63]

Some of us have doctors who allow us to do our own regulation. And most of us who do that have learned from the experience of others on this forum. Many doctors are used to prescribing pred for a short time, not for a disease which can last on average 5.9 years. So those doctors may reduce you to too low a dose before your body can cope. The pred is dealing with the inflammation caused by Polymyalgia Rheumatica. The idea is to reduce the dose slowly to the dose which still copes with the symptoms. Go too fast with reduction and you risk overshooting the dose you need, and then needing to bounce up to a higher dose again to deal with inflammation and stop pain. Everyone’s disease is different. Some people can reduce quite quickly. Others can’t. The perceived wisdom amongst experienced doctors and patients is that the patient should be on their first dose for PMR (usually between 15mg and 25mg ) for longer than a month to really get a grip on the inflammation. So if you still have symptoms, don’t consider reducing, and talk to your doctor about remaining on 15mg for longer or even trying an increase of dose.

You may be alright to reduce to 12.5mg but you may find it’s not enough and symptoms return, especially if you still had symptoms on 15mg. Going from 15mg to 12.5mg is a reduction of much more than the 10% those with experience usually recommend.

Most doctors recommend dropping from 15mg to 12.5mg and some patients can manage it. Others can’t.

Many of us find that a more careful reduction of no more than 10% of the present dose works well. And also to use a slow taper over a month or so, rather than change from old dose to new dose in only one day is easier on the body as regards withdrawal symptoms..

When we are newly diagnosed we have to follow our doctors instructions. If on doing that to the letter we find the reductions recommended are too fast so the disease symptoms return most of us have then to enter a dialogue with our doctors. And at that stage we usually use information gleaned from this forum to ‘persuade’ them. Others will come forward with information you may need to present to your doctor.

But for the meantime you will need to follow instructions. Be sure to let your doctor know though if you still have symptoms at 15mg, especially as you have been instructed to reduce dosage to 12.5mg on 11th January. Doctor may consider a higher starting dose, and/or keeping you on 15mg for a few more weeks before reducing.

I hope this helps and wish you the best of luck.

[PMRpro Ambassador]

I think you are probably jumping ahead of yourself - if you try to reduce to a lower dose and you see that the symptoms aren't as well controlled then obviously you stop the reduction and stay at the dose that has been enough for the past month or so. That isn't going up and down using pred as if it were like a painkiller, it is taking note of your body.

But most of us who actually adjust a dose do so with the blessing or instruction of our doctors - only you can assess whether your pain is staying the same on a new dose. You should never be reducing the dose relentlessly to zero - you are looking for the lowest dose that gives the same result as the starting dose did. It varies from person to person and the technique is called titration - maybe you did chemistry at school? Same idea, you are looking for the right amount for you. If you get below that you will have a return of symptoms - that is your guide. First you need to get to know YOUR body, YOUR PMR and YOUR response to pred. In the early months of PMR the disease activity seems to be greater and over time it slows down - if you get stuck at a dose in the first 6 months it doesn't mean you won't get lower - just not yet. If you don't learn anything else in this game, you will learn patience!

[Charlie1boy]

Hi,I'm six years into PMR, so, although I'm not medically qualified in any way, I do have some experience, and have tapered from 30mg to 1.5mg without really having a flare.

Mary63's reply to you is spot on in my view. After the first month or so, I have been left to sort my own levels of pred, and I have followed the excellent advice on this forum.

Nearly always I stayed at a dose for four to six weeks, and usually gave myself an extra week even when I reckoned I felt no symptoms, before tapering. Also, I followed the 10% rule very carefully, so went from 15 mg to. 13mg to 11.5mg to 10mg, which worked well for me. Thereafter, I tapered in half mg every time. Like lots of others it took me a while to get 10mg to 8mg (about a year!),so needed a lot of patience.

Yes, we are all advised to follow doctors guidance - rightly so-, but if your doctor is happy for you to taper as you feel is right, as mine is, then that helps. Each of us knows how our body feels, and I think that is a good guide for lots of us when the best time is to taper down.

By following this forum, I think you will soon feel more confident about living with PMR.

Good luck, and a Happy New Year.

Paddy

[Hidden]

Thanks all I think for now i got a better understanding of how things are going to work for a long time to come. At moment I will be having 2wks appointment with dr and regular blood tests and blood pressure check( which blood pressure up this morning) and I think this will be the case for few months.