Tapering from the top with Prednisolone and dose related to weight ?

[Rimmy]

Hi all

I started on a very high dose of Prednisolone 50mg but for 3 days only - then 25mg for 4 days followed by 20mg for 4 days. My GP had said to stay on 20mg for a week and taper in 2.5mg amounts until I reached the 'lowest effective dose'. After reading all the experiences here and elsewhere I realise now it will likely be much slower. The problem I have to start with is that I dropped down to 17.5mg for a couple of days and felt uncomfortable again on the 2nd day (not really bad as I was 2-3 weeks ago) but my neck and upper arms started to feel sore & stiff again. I thought as I was on quite a high dose anyway that wouldn't likely happen as many of you seem to have started on only 15mg. I've gone back up to 20mg temporarily and will try to reduce again in a couple of days - or am I being too ambitious if I am getting a response that quickly - or should I expect to feel some discomfort again so soon. Possibly relatedly - is it relevant that I am quite a 'big' woman 5ft 9in and 85kg - how much does dose need to be related to BMI for example ? I am guessing being smaller might require lower doses ?

Thanks

[DorsetLady PMRGCAuk volunteer]

Hi Rimmy,

50mg is a high starting dose if you have PMR, or do you have GCA? As you say usual start for PMR is between 15-20mg.

I would say that if your pains came on virtually straight away then that is more likely to be steroid withdrawal rather than a flare, or return of symptoms, which takes about a week or so to materialise.

I found that for the first few days after reducing I found I felt really yucky, but it went off after about the 3rd or 4th day. That's why many follow a slow taper plan that takes a few weeks to get from old to new dose rather than an overnight drop (old dose one day, new the next).

As you get lower would suggest you do that anyway, much easier on body.

Tapering in 2.5mg might sound okay to GP, but it becomes more difficult once you get below 20mg, so ask for 1mg tablets. Recommended that you don't reduce more than 10% of your current dose- that's 2mg at 20mg, but 1.5mg at 15mg, and obviously 1mg or less once you get to 10mg. Explain to GP about the 10% if your your request is queried.

You could try your reduction again and see what happens, but I would suggest you stay at each dose for about a month, that gives you plenty of time to know that you don't have any problems. If you reduce too quickly you are likely to go past the level of Pred that you need to control the inflammation.

You may be right about dose to weight ratio, plus some people get more benefit from the Pred than others, it's not a very exact science, but it is interesting that when steroids are given to animals, the animal is weighed to get correct dose!

Joking apart, you need the correct amount to control your inflammation, and that varies from person to person, and on your personal circumstances.

Good luck, and remember a slow reduction will get you there, so don't be rushed by anyone. Listen to your body, and go with it.

[Rimmy in reply to DorsetLady]

Many thanks I appreciate your comments and will ask for the 1mg tabs as quartering the 5mg is rather difficult. No GCA symptoms so I also queried the starting dose which seemed very high - later my 'youngish' GP admitted I was only his 3rd ever PMR patient - altho he seemed very aware of the dangers of GCA. Since then I have more or less asked for what I want based on as much reading/research as I could do (I was a social and health if not 'medical') researcher and useful forums such as this one. Luckily he has been amenable to this and does not treat me with condescension but with 'respect' really which is great. I think he himself has learned quite a lot in the process and hopefully that will benefit others as well as myself into the future. I have also now also been referred to a rheumy.

[DorsetLady PMRGCAuk volunteer in reply to Rimmy]

Good, on both counts. It's nice to hear about an enthusiastic GP, they are under so much stress nowadays I don't envy them their jobs.

[PMRpro Ambassador]

There are some experienced doctors who use a few days at a very high dose - they seem to think it "hits the inflammation on the head". Now while that sort of approach is going to work well in many sorts of flares of other things, like asthma, I'm less convinced in PMR but maybe it does give the patient a good start in clearing out the existing inflammation. The problem is, you have then to reduce from it! But after only 3 days it shouldn't pose a problem.

The dose used for PMR, now generally 15-25mg as a starter, is theoretically one that SHOULD work for everyone. Then you taper slowly down to find each person's ideal dose, it is called titration and is done for several drugs where the bio-availability varies except usually you start low and work to high. The bio-availability of pred, the amount absorbed and available to the body, varies from 50-90% but, perhaps misleadingly, is generally referred to as 70%. If you are a 50% person - you'll obviously need a lot more for an effect than a 90% person.

A study in Italy showed that 75% of patients would respond to a starting dose of 12.5mg within a month - and that there was obviously some relationship to weight as small dainty women did better than the bigger blokes! So there is some thought that if lower doses also work then that reduces the total amount of pred the patients will be given overall. That led to the recommended starting dose being lowered somewhat - 30mg was common some years ago. However, now they are tending to go back the other way, perhaps the impression they have is that starting on a higher dose achieves a better result overall. Who knows!

I have to say - having a compliant GP is sometimes more helpful than a rheumy who didn't see you at the outset. Some seem to get a bit upset that a GP had the temerity to start treatment with pred and insist on reducing pred so they can see you for themselves. Or you get one like the one I saw who seemed to want it to be anything but PMR so he could use anything but pred!

[Rimmy in reply to PMRpro]

Thanks PMRpro - I have started to think it would probably be better to stick with my GP (rather than see a specialist) and utilise the wisdom and experience of those on this forum as it is becoming evident to me there is an amazing gap between academic medical perceptions of treatment of PMR and the experiences of real human beings. I am not anti-science - in fact I think we have lots to be grateful for from the medical profession and I am somewhat skeptical about alternative medicine/treatments - but it is as if many of them are not 'listening' adequately. It is not now difficult to predict there will increasingly be a shift in power relationships and 'ownership' of knowledge(s) as people gain greater access to information/experiences of others on the Net. There are many who think this is a 'dangerous' thing and that some people will believe almost anything they read regardless of the source - but with education levels rising this is increasingly less 'true' and it isn't very difficult to differentiate 'science' and random database of one 'opinion'. Also interesting that things like tapering methods devised by people with PMR which I have read about here and elsewhere are being taken up in some clinical trials. This is great self-initiated citizen science which integrates/applies the experience and wisdom of patients with the best elements of the scientific method. After all we are all unique people NOT 'algorithms' !!

[PMRpro Ambassador in reply to Rimmy]

I could have written that! I am very lucky to be in contact with a load of doctors who appreciate that patients do now seek good information. In fact the head of medicine at the local hospital said to me last time I saw him as a patient that it was good to be able to discuss their illness at such a level with the patient.

A rheumatology group OMERACT realised in the early 2000s that they could not fulfil their role WITHOUT the involvement of the patients who have the diseases. 10% of the group is patient research partners who are involved not just in the meeting every second year but also in advising in ongoing research.