Tapering off predislone

Hi christine I have AIH n I can only tell you what happens to me when I taper down from pred I feel really ill no energy generally not myself aching n sore throat it's happened every single time my imflamation goes up and back I have to go to my maintenance dose 5mg 

Your GP has reduced you too far and possibly too fast. Some people can reduce at that sort of rate but not everybody. It is far more likely to be a flare of the symptoms than a virus.

The pred does not cure the PMR - it mops up the inflammation caused by the underlying autoimmune disorder that makes your immune system unable to recognise your body as self and so it attacks the body tissues. You start at a dose that is high enough to clear out the existing inflammation - once you have achieved that and the symptoms are as good as they will get and the blood markers are lowered. preferably in normal range, you can then start to reduce slowly to find the lowest dose that manages the symptoms as well as the starting dose did. 

Some people can reduce like that - providing ALL the inflammation has been dealt with but if there is any inflammation left the reduction will let it mount up to a level where it causes symptoms again. But the majority of people can't, the steps are too big and they suffer steroid withdrawal discomfort. Once they are too low they start to feel like they are back at the start again.

Top experts on tapering (reducing the dose slowly to identify the correct dose as opposed to reducing the dose to get off pred) say the reduction steps should not be more than 10% of the current dose. That means not more than 1.5 at 15mg, 1mg by the time you are getting to 10mg. Your doctor is asking you to do much more than that and your body is saying no.

PMR is a chronic disorder - and everyone needs a different dose to manage it. A fixed reduction plan rarely works - or may work at first until you get closer to the dose you need but in the early days of PMR it tends to be higher than it will be later. The reduction you have been asked to use so far is the same as one recommended by a top PMR expert group and they find that it reduces the rate of flares from 3 in 5 to 1 in 5 - but it doesn't eliminate flares entirely and they do emphasise it has to be tailored according to the patient and the symptoms returning. You don't say how long you stayed on each dose - 4-6 weeks is what this expert recommends. 

I think you may well need to go back to 15mg and stick there until your blood markers are stable and low and then try to reduce much more slowly - that may work. I do hope your doctor will be willing to consider it.

 

This is normal steroids lower your own natural immune system you feel great on them back to square one off of them I’ve been going on like this for 2 years and still have no diagnosis to my problem when down to 5mg feel really bad so they just up the dose again not a good thing but better than feeling really ill

Best advice is that it needs to be slowly. Personally I had a horrible time getting below 12.5mg even now, 3 years later.. I'm still in the process of tapering off it and my adrenals haven't woken up. I've been taking this stuff for a number of years.

What I'd suggest is getting hold of some 5mg and 1mg tablets (prednisolone), the 1mg makes tapering a lot easier it gives you the ability to drop half a mg here and there as you are ready to do it. Try dropping a tiny amount every 2 or 3 weeks. Once you get below 10mg each dosage drop will probably make you feel crappy you just need to ride it out... eventually you'll start to feel better and you can think about the next small dosage drop.

Getting off it completely can take a large number of months and a lot of patience. It's tempting to rush it sometimes, but just being gradual works better in the long run. No matter what tablet strength you have, you can always break it with a pill cutter (having said that, some brands are crumbly). Also, if you need it, don't be too afraid to put the dose back up a little bit for a little while to get back to an even keel.. and have another attempt at the taper.

Hi Christine

i have Chronic Urticaria and the only thing that gives me quality of life is Prednisone and Allegra.  My doctor  slowly upped the Prednisone until I became hive free.  She kept me on that dose for a month then extremely slowly she had me go down 1mg  for a couple of weeks then go down another 1 mg for a couple weeks and so on as to let my body get use to the lower dose......I have gone through 300+ 1mg Prednisone tablets.  The key with the Prednisone is to go down very gradually.  Because she has me go down this way I have had no side effects.  When I start to break out in hives I just add 1 or 2 more mg for a week or so.  I pray I will be able to go into remission and off Prednisone but until then I am grateful it gives me quality of life and able to live on a low dose most times under 3-5mg.  I hope this helps.

Wendy