Inflammation was right down until I dropped the dosage.

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

They do 6 weeks on 15mg, 6 weeks on 12.5mg and then a year on 10mg before attempting a drop to 9mg.

That link will also give you links to a support site with a lot of information about PMR and an associated forum.

The pred hasn't cured anything - it is controlling the inflammation caused by another, underlying autoimmune disorder. This allows you to  manage the symptoms to allow a decent quality of life until that autoimmune problem burns out. The reduction is to find the lowest dose that does that. 

Pred is a powerful medication, yes it has long term side effects - but so does untreated PMR. You have a choice: you take pred and feel reasonably well and able to have a life (perhaps not perfect but not too bad) or you say I'm not prepared to "pay the price" of taking pred and the PMR returns.

What do you mean by that? Who has scared you about taking long term pred? I have had PMR for 10 years, 5 years undiagnosed, 5 years on pred, most of the time at above 10mg. My bone density is pretty much unchanged, I don't have high cholesterol, I'm not diabetic - those are the main scare stories. If you try without pred you are in pain and immobile: two primary risk factors for depression and developing osteoporosis. You have a permanent state of inflammation which increases your risk of cardiovascular disease (heart and circulation problems) and even cancer. Pred reduces those risks - pred isn't all bad.

The inflammation was down because you are on pred - that is normal, that's why you take it. You haven't been on it very long and there are many many people all over the world who have been taking a 10mg dose for far longer than that and they haven't gone up in a puff of smoke. I do wish doctors would take a balanced view of thigs - yes, you need to get off pred, but not until the PMR and you are ready.

However, there is another possible explanation for the return of the pain. If you reduce too far or too fast in too big steps you can also suffer from something called steroid withdrawal pain. That is just your body protesting at being asked to manage with a lower dose - and it often resembles the illness the pred is being taken for. A reduction should never be more than 10% of the current dose - but even that done overnight may be too much for some people and they develop pain - and thinking it is a flare go back to the previous dose when it isn't necessarily so.

Over the last few years, several of us have realised this and developed reduction schemes which spread a reduction of 1mg over 3 or 4 weeks. There are a few versions, one is being used by a consutant in the NE of England - and he is finding it works, patients are having fewer "flares". They probably weren't flares but steroid withdrawal. I will post my version here - it's all over the site but finding it is a pain. Once your symptoms have calmed down again try this. If the pain returns it means you aren't ready for a drop in dose yet. It doesn't mean you won't get lower, just not yet. You can try this reduction every couple of months and one day it will work. But don't panic that you MUST get off pred NOW. You don't. Using this reduction scheme I have got down to 4mg - I'd never got below 9mg before trying to reduce even 1/2mg at a time doing it in one go. But it is also important YOU do your bit - don't go overdoing it because you feel well. PMR doesn't take prisoners, it bites back.

A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to, as it have done for several ladies beforehand.

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

The Bristol group starts new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%). I suspect their flares then come below 10mg as they do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX – we suspect those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.

This reduction scheme is being used by quite a few members of the PMR/GCA UK forums (both of them) and the feedback to date has been good: people are being able to reduce without discomfort so they have stopped worrying about “flares” which probably also contributes to their well-being.