Prednisone withdrawal

Hello Janice, I have been taking Prednisolone now form January '01, I have tried many times to reduce, each reduction I have had to take the new dose for at least 3 months. And that's taking it very slowly from one dose to the next. I'm was on 3,3 and 2 for about 5 months at the beginning of July I reduced to 3,2 and 2 I haven't been doing very well so on Saturday I couldn't stand it any longer, I went back up to 4mg. I'm gutted, I do so much want to get off steroids. Yes I think it's fair to say we can expect pain/aching on reduction from what the ladies say on here. I didn't know that no one at rheumatology has ever mentioned that to me, I shall stay on the 4 mg for a month and try again, much more slowly, even more slowly than I have. 

It is very common for your body to show similar symptoms to the illness you are taking pred for as you reduce, yes. Whether it is normal is another question.

Most reduction schemes use steps that are far too big. It has been said for a long time that a reduction should not be more than 10% of the current dose - so if you start at 15mg for PMR it should never be any more than 1.5mg at a time and as you get closer to 10mg it should be more like 1mg. Below 10mg it should get nearer to 1/2mg at a time. For many people even doing that small a drop overnight is too much and some of us developed reduction schemes where we spread it over a few weeks. A lot of people have tried one or other version and found it works better. One version is even being tried by a consultant in the north of England and he also finds it is better. I've posted it many times - here it is again to save you looking for it. I'm sure it will be useful to you too Margaret.

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.

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.

Ooops - knew there was something else to look up! I'm not familiar with Mobic!

It isn't recommended to take NSAIDs (nonsteroidal antiinflammatory drugs) alongside pred. Both can cause stomach irritation and even bleeding. Taking both together increases the risk. Mobic is an NSAID - so are ibuprofen and aspirin. Theoccasional dose for a headache might be OK but I wouldn't use any of them regularly. 

I have the same problem and believe this is quite common.   I am now down to 5mg and for the next 2 weeks will alternate each day 4 1/2 one day and 5 the next , after 2 weeks will drop to 4mg.    Will then stay on 4 mg until I am stable then reduce by 1/2 mg alternating again.  I cut the 1 mg pill in half.   This has worked for me - might help you ?  

Ann

 

Thank You all for your advice . I will try the 1/2 mg reduction dose and see if  that helps. 

Hi all, need a little advice, I was on 30 mg of prednisone and over the last 6 weeks by order of the doctors I have been reducing the dose by 5 mg per week and now I am on none,however I aim feeling very tired I am feeling pain in the chest and my joints and generally run down is this normal thanks John