Does anyone else find 17.5mg pred doesn't stop PMR pain?

[SeasideSue]

I was recently diagnosed after a short course of 20mg pred stopped the pain in its tracks. Bliss! My GP started me on treatment of 15mg pred but I was still in pain and stiff. He said he was concerned that this standard dose hadn't helped and increased it to 20mg. Again that helped a lot, but I've just reduced to 17.5mg and I'm in a lot of pain again. Unfortunately my doctor's just gone on 3 weeks holiday and I don't want to see one of the other docs as they don't know me like he does so I'll stick it out until he returns but I wondered if anyone else has had a similar experience and if so how it worked out.

[Celtic PMRGCAuk volunteer]

SeasideSue - a few people do need slightly higher than the usual recommended 15mg starting dose for PMR. It could be that perhaps you didn't stay on the 20mg dose for long enough to get the inflammation completely under control (if you are someone who had raised blood test markers at diagnosis, these should have been repeated before the reduction).

However, if you have only just reduced to 17.5 in the last day or two, then you could just be suffering steroid withdrawal pain which could settle in the next week or so. If not, then you will need to return to 20mg for a couple of weeks and if that is successful, you could try reducing again but just by 1mg to 19 - a few people have had success by going really slowly even from the higher doses.

[SeasideSue in reply to Celtic]

Thank you Celtic, I'm really grateful for your advice.

[PMRpro Ambassador]

Celtic has said it - I would suspect there is still some inflammation present - you don't say how long you were on 20mg, the top experts in the UK say 6 weeks at the starting dose before a reduction by 2.5mg to a dose for another 6 weeks. The start/stop approach can cause some people problems in that they then struggle to reduce. Although generally people tend not to get "stuck" until nearer 10mg we have noticed several people who struggled to reduce from doses around 20mg. When it was suggested they never went more than 1mg at a time they got to much lower doses without any trouble. Since then, a few of us refined our reduction plans to spread even that 1mg over longer because we think some people weren't having a flare of PMR but were reacting to the lower dose of pred. The pains are similar.

Here is my version again - I was very sensitive to pred so it starts very slowly, as I say people may be fine starting from "1 day new dose, 4 days old dose". But so far this or something similar has worked for everyone who has tried it.

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 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.

[SeasideSue in reply to PMRpro]

Thank you so much PMRpro, that's very helpful.

[piglette]

I started on 20mg in January and as you say Bliss. I could hardly move at the time I was in so much pain. I then reduced to 17.5mg after three weeks for a fortnight and then 15mg when I had problems. I am now back on 17.5mg. I do find that the rheumatologist is very keen to get me down to 10mg but he did admit that he may have gone too fast, which I suppose is good news.

[SeasideSue in reply to piglette]

Thanks piglette. I think my doc has hurried things a bit and I'll just have to take it a bit slower.