Does it make sence to increase predisilone from 15mgs to 30mg?

"the rheumatologist says he wants me back to how I was before PMR"

but is trying to reduce your dose of pred in a totally unrealistic way! Did he check the ESR and CRP in that 3 weeks before telling you to reduce to 15mg? You need at least 6 weeks at the starting dose to get the inflammation under control - and you should see that from a reduction in the ESR/CRP. Then any reduction shouldn't be more than 10% of the current dose - so not more than 2mg at a time. Some patients can't even cope with that and several of us worked out reduction patterns that are all fairly alike in terms of aim. At first we suggested them to patients who struggled reducing at lower doses where the percentage gets higher if you can only reduce 1mg at a time (1mg at 5mg is 20% and it gets worse). Then we realised that many "flares" may not be the PMR flaring but steroid withdrawal which is often shown by pain similar to the original problem. A specialist in the north of England has also been trying similar reduction patterns with many patients at our suggestion and is finding it works.

Here is my version which includes explanations of the whys and wherefores:

"You say you have lurched from one flare to another - your reduction scheme needs some attention! 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 did 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 start 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%) and I suspect their flares then come below 10mg as they then 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 - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX."

Depending on where you start (1 day new, 6 days old, or 1 day new, 4 days old) you will reduce 1mg every 3 to 6 weeks or so. But you can reduce continuously, you don't need to spend a month at the new dose to see if it is OK and controlling the symptoms.

And as a final word - your rheumy is wrong about being "as you were pre-PMR". The sad truth is you are unlikely to be that as long as you are on pred (I'm almost there at 5mg but not quite) and even if and when you are able to get off pred altogether you will be that bit older and not quite the same as your were x years ago. And you won't ever gt there if he tries to rush you!

this really is excellent Eileen . I am trying to get to 6  following your method, would recommend it to anyone, I have just passed the 12 months mark and see Rheumy tomorrow he expects me to be on 4, no chance I am afraid, I went straight to 6 from 7 and was just about ok for 3 weeks and "put up" with the pain and stiffness returning till I put myself on 7 again, after 3 weeks no pain , no stiffness,been reducing for 3 weeks , uncomfortable sometimes but determind to continue,

 

The Kirwan group would have you in the middle of their 10mg stage at 12 months: 6 weeks at 15mg, 6 weeks at 13.5mg and then 1 year at 10mg. They find that reduces flares to 1 in 5 instead of 3 in 5. We think that is good - but still pushing it. Hence our idea.

Thanks EileenH I do get the impression that the rheumatologist is more interested in reducing the pred than any problems I may have with PMR. He has been mumbling about getting down to 10mg. I think I am being a bit docile with him.

I think they tend to assume that the 15/20 mg dose is far higher than you will need and that 10mg will also still be fine - but aren't aware of the problem of patients who struggle to reduce the dose. Many people DO manage to reduce like that and the people you meet here are the ones who've had problems somewhere along the line, we're a "skewed population"! But we are generally a confident bunch, many of us with broad experience of a lot of fields and are willing and able to look about and find answers - and ask questions. So yes - stand up for yourself! If you have a nice open-minded GP you can go to them and offer the Kirwan paper for basic info about management and our add-ons for ease of reduction and ask them to take over the management. I saw the UK consultant twice - or maybe once and a half - and he was totally uninterested in my response to 15mg pred. The impression I got was that PMR was beneath him - he was too clever to deal with a granny's rheumatism ;-)

I think you are right, when I mentioned I had a lot of pain in cutting down he shrugged and said yes of course.  I have had three GPs in three months they all keep leaving. We have three left in the practice and two of those only work two days a week. It is a minimum of twenty eight days to get an appointment and half if the GPs are now locums. I did talk to my current one on the phone for thirty seconds, I have never actually met her though. 

28 days to get an appointment???? That's something for the media and the DoH. That is absolutely disgusting and stupid. And dangerous.

"Yes of course..." - he'd get "yes of course" from me - except I need the pills! I have to pay more than I would in the UK since I'm over 60 and that doesn't make any difference here and we pay a small amount for most things but I see my GP the day I decide I need to - it's turn up and wait although you can make an appointment with her outside surgery hours - and there is no restriction on time. There is only her, no choice/parttimers. There is a locum when she is on holiday. I'm staying here!

I think the 28 days appointment time already has made the front pages of the UK papers recently (a week or two ago) and been on TV too. We are not the only surgery, the NHS has problems. I think the come in and wait system has long been disbanded in my surgery.

Saw my Rheumy yesterday, have lost 3 pounds in weight since last visit, BP normal, etc ESR 10,normal, explained our reducing method and was very interested. However he did advise that I keep reducing (of course) and if I get what we call Flare ups, to take painkillers rather than increase the pred.He expects me down and down in the next 6 months to almost Nil, obviously our Docs have never suffered this complaint themselves. I dont take painkillers only occasional Paracetomal, which does help at times. But will try to follow instructions for next 4 months which is when I see him agai. This Forum is so helpful, thankyou Eileen