Reducing Pred dosage

[David_H]

Hi everyone. I've just finished 3 weeks on 10mg Pred (started on 15mg for 5 weeks followed by 12mg for 3 weeks) and been told to reduce to 9 mg for a further 3 weeks which I've just started on. Does this seem a 'normal' course for reduction? Is 3 weeks about the right length of time for each reduction? I guess I'll be told to go down to 8mg next.

[Celtic PMRGCAuk volunteer]

David, I would remain on that 10mg dose for at least another week even if you are feeling well with no pain. Three weeks between each dose is really not considered long enough to keep the inflammation under control. I did a month at each dose down to 5mgs where it all went pear-shaped necessitating a return to 10mg to get things under control. Remember that each reduction is a larger percentage drop than the previous one, hence the need to really slow down the drops the lower you get. There is no "right length of time" for any reduction - it's very much a case of trying it to know - but certainly the smaller the reduction in dose, the easier it is to see where the inflammation might be starting to surface again so that you can get on top of it quickly with a small increase back to the dose at which you last felt comfortable.

[David_H in reply to Celtic]

Hi celtic, did your symptoms return to a serious level when it "all went pear shaped"? I've noticed more discomfort and fatigued this week since reducing from 10mg to 9mg. It may be a short-lived downturn so will see what happens over next 2 weeks. Maybe have to go back to 10mg but I'm not keen to do so.

Also waiting to see if I will have to take extra meds for low bone density which GP says would not be linked to Pred as not been on it long enough (don't fancy that either!)

[Celtic PMRGCAuk volunteer in reply to David_H]

David, I was aware of worsening symptoms within a short time of starting the 5mg dose but, knowing no better at the time, I followed my rheumy's planned programme and continued reducing at 1mg a month. When I got to 3mg, I was finding it almost impossible to walk, and I had visions of returning to my sorry state of being bedbound again as in my undiagnosed days. A small increase back up the doses proved insufficient and a return to 10mg was needed.

The returning discomfort and fatigue you are experiencing so soon after your recent reduction from 10mg to 9mg may point to steroid withdrawal pain. But if that pain continues building in the next week or so, you would be wise to quickly return to 10mg - if you leave it too long, you risk allowing the inflammation to really take hold which would entail an even higher dose to get it under control again.

If steroids are going to cause bone loss, it does tend to occur early on in treatment rather than later. Good luck with the DEXA scan results - hopefully, you are already taking a daily calcium supplement, such as Calcichew to help protect your bones. If you haven't had a Vit D blood tests, then do ask for one as any deficiency can cause pain similar to that of PMR, plus other 'nasties'. Many of us have been found to be deficient and have needed a course of high dose Vit D3 to bring our levels up to normal. An added bonus is that the Vit D3 enables more calcium to be absorbed into our bodies from our diet, thus further helping to protect our bones.

[PMRpro Ambassador]

For most things where pred is used it is probably a "normal" course of reduction. Whether it will work in PMR is a very different matter. Many people would not have managed the reduction you have done without problems and a return of their symptoms. I was started on 15mg for 2 weeks, then 10mg for 2 weeks and 5mg for 2 weeks - I was brilliant on 15, pretty good on 10mg and could have managed on 5mg. Within 6 hours of missing the first dose I was in as much if not more pain than before. I never managed to get down below 9mg again for over 3 years.

It sounds as if the inflammation has been pretty well dealt with and what you are now looking for is the lowest dose that will manage the symptoms for longer term maintenance. From what I have seen over the past 5 years and a lot of people on the forums 3 weeks at any given dose is not long enough to know if it is still enough. The underlying autoimmune disorder remains active and as long as it is active you need some pred.

It may be you are fine at 7mg but that is close to "your" dose and when you get to 6mg it isn't enough, 6.5mg would have been though. Then the inflammation will build up very slowly and maybe take 4 or 5 weeks to start causing discomfort. If you are not alert you may miss it and in the meantime have reduced another 2 or 3 mg. You have no idea which dose was still enough, you will have to go back to above 7mg to get it under control before reducing again - and thus throw away the supposed advantage of reducing the amount of pred you are on quickly and increasing the amount of pred you need to take.

It has been acknowledged by the experts in PMR for years that the most common cause of flares is reducing too fast (in big steps) or to too low a dose. The greatest problem though is that once you start to yoyo the dose it often becomes increasingly difficult to reduce the dose the next time. Noone knows why, but it often happens. The recommendation is that no reduction should be more than 10% of the current dose - that is 1mg at 10mg but the % then increases as you go further and by 5mg it is 1/2mg.

Several people on various forums were having difficulty in doing the steps down their doctors wanted and worked out similar reduction plans. This is the link to a description of my version on this site.

healthunlocked.com/pmrgcauk...

Several people on the site are using it and one lady has said she showed it to her rheumy and he has taken it to use for other patients who have struggled below 10mg. It is also being looked at by a PMR research group in the north of England. Another pattern is used by another rheumy in the north. Even Professor Dasgupta tells his patients to reduce using a pattern which achieves a similar result when they are down to 8mg.

There is a paper by Quick and Kirwan, both formerly of the Bristol rheumatology department, called "Our approach to the diagnosis and management of PMR and GCA" where they suggest a scheme of

15mg for 6 weeks

12.5mg for 6 weeks

10mg for a year

then reducing 1mg per month thereafter, taking 2 years altogether. If symptoms return they stop the reduction until they are under control. Doing this achieves a flare rate of 1 in 5 compared to 3 in 5 using other reductions schemes.

It is the symptoms that are king: if you have any doubts as to whether they are returning or if you have a cold, other infection, stress or are travelling don't reduce at the same time - wait until things are calmer!

Men often are able to reduce more easily than women - but even so, if the autoimmune part of PMR is still active you will need some pred. If you are lucky it will be well under 10mg, maybe even 5mg or below.

Good luck

[Parijm]

Just reinforcing the posts below from Celtic and PMRPro who have made much sense of things for me and my own reduction plan. My GP started me on 30mg reducing by 5 monthly until I reached 10 mg when reductions to drop 1 mg monthly. However at 10mg last Oct I started to struggle with symptoms again but persevered to 7 mg when I met Dr. Together we agreed going back to 10mg. After 3 weeks I feel improved - gradually. Last week met with Rheumotologist. He agrees I should remain on 10 mg for another month or more. I have learned from these posts that speed in reduction does not work, esp going down from 10. I anticipate a VERY gradual drop over the next 12 months. Our GPs just don't seem to be aware of the importance of this and risks of inflammation flaring up again. Where there is talk of reducing .5mg, am I to break the 1mg in half?

[PMRpro Ambassador in reply to Parijm]

You can break the tablet for 1/2mg yes - you can get pill cutters from the pharmacy. 1mg tablets only come as ordinary white tablets - if you have enteric-coated red or brown pills they must not be cut.

You can also spread the reduction over a few weeks:

healthunlocked.com/pmrgcauk...

[Charlie1boy]

Hi David. I will be interested to know how you get on with your reduction programme, particularly as I am a bit behind you. Am still on 15mg, having come down from 30mg in January. Was going to drop to 13mg next week, but having read pmrpro's reply to you have decided to wait another week, as I will be travelling to Switzerland on Saturday for a few days.

Seems we all need to be especially vigilant after we get down to 10mg, which is why I am interested in your progress.

Cheers

[David_H in reply to Charlie1boy]

Hiya, I've started on 9mg but muscle pain has increased somewhat (probably for about 4 hours after taking Pred in the morning) but this started before the reduction probably because I started exercising more so I will have to reduce the exercise and see how I get on on this dose.

[chockybuttons]

Hi, I was diagnosed with GCA in January this year, doc put me on 15mg for a few weeks, had a blood test, which was good, so she lowered to 12.5mg, next blood test was same as before, but she lowered pred to 10mg. But head was feeling worse and don't feel great at the mo, after last blood test, docs rang next day, want nother blood test done in 2 weeks cos sumat wasnt quite right! Not surprised, seeing the way I'm feeling. Suggest if you not happy, have a word about it! Good luck, let us know how you get on

[chockybuttons]

Hi, meant to say I also have Type 2 diabetes, think that's why she put me on low pred, to try balance it out with the diabetic tabs she put me on, cos pred shot my blood sugars up, which they can do. Surprised you on so low pred really. Anyway, keep us informed