Suffering from soreness & tenderness. Have increased Pred but think maybe that's a mistake and I just need to put up with it - any advice?

[Juliemargaret59]

I've just found this site and reading everyone's posts has been SO helpful. I've been struggling to reduce my steroids but get flare ups which I can usually deal with by raising the dose for 2 or 3 days. For the last couple of weeks I've had really sore and tender skin on my left side and breast, where my bra sits. I had got down to 10mg but went up to 15mg to try to get rid of the soreness, now I think that was a mistake as it hasn't helped and I'm worried that I'll have undone the 5 months it took me to get down from 15mg to 10mg ... I think maybe I'll try going down to 12mg. Does anyone have any advice?

[iforget]

Can I ask... when you say you "get flare ups" do you mean they come out of the blue or do you mean you get a return of symptoms when you try to reduce?

[Juliemargaret59 in reply to iforget]

Hi - thanks for your response. I've been going down by 1mg a month and the flare ups don't come immediately I reduce the dose, although I assume they're related, but they can come two or three weeks later and it can be a different kind of pain each time. The last couple of times it's been the soreness and tenderness I described above although my original symptoms were the usual muscle pains in my arms and shoulders etc... My GP and rheumatologist both said if I got pain I should increase the dose but I think maybe that as this pain isn't too bad (certainly nothing like as bad as other people describe on this forum) that I should put up with it and keep on v gradually lowering my dose. I'm a bit confused about it all so any help/advice gratefully received...

[iforget in reply to Juliemargaret59]

I am really sensitive to drops and it usually kicks in a few days to a week after a drop. I battle through (it is painful but still nowhere near as bad as pre pred days) and it pretty much always settles within a couple of weeks. After trying to make too big a drop on the first drop and paying the price for that mistake, I am doing a very slow decrease ...I only drop 0.5mg every 6-8 weeks and I only start the scheduled drop providing I am otherwise healthy (no germs or obvious signs of impending lurgy etc) and not within a few days either of side of a trip.

I have only had to increase on two occasions - the first time I simply went back to the previous dose and stayed there a further four weeks before trying again and the second time it was a flare unrelated to a drop and I increased by 1mg (two drops) and stayed there for a month.

Everyone is different and I choose to do it this way because a) I never wanted to be on steroids and I hate what they do to me...b) I want to get off steroids asap and by making a big increase I am seriousness delaying the chance of being off them or on the lowest possible dose.... c) I was told that yo-yoing between doses does more harm than good

I hope you will find what works for you... and perhaps someone else will be along soon with some suggestions

Take care

[Juliemargaret59 in reply to iforget]

Thanks so much for sharing your experiences, it's really helpful. The docs always seem to want me to drop the dose much more quickly and your regime (and others on this site) makes me think I should take it even more slowly. I think in future I will put up with some pain and hope it settles without increasing my dose as I also really want to get off the steroids. Thanks again.

[iforget]

Mt rheumy wanted me to drop faster initially but the first drop sent me into a tailspin and he agreed to the very slow but steady drop plan. It is working pretty well so far and to me seems to make far more sense than trying to drop too fast and then upping it and getting caught up in the uppitydown cycle

[PMRpro Ambassador]

Remember you can still have other things when you have PMR!!

The trick really does seem to be a very slow drop in pred dose - it should never be more than 10% of you current dose anyway but here is the scheme I and others have used successfully. There is another version - but this is mine and so i can cut and paste it any time:

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. 1mg 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.

[Juliemargaret59]

Thanks so much for that information. It's really helpful and I will definitely try the reduction method you suggest.