I have a friend diagnosed with pmr and who started on 15mg of pred in June 2020. She lives alone and could hardly get out of bed and felt very ill. However, she is now down to 5mg after only 7 months and seems OK. She's desperate to get off pred as has put on weight and found it difficult to sleep. She's now stopped feeling ravenous and sleeping better. How does someone manage to reduce steroids so fast as she's been reducing 1mg every 2 weeks recently which sounds impossible to me. Do some people get off pred in a year with pmr?? I am very happy for her but I wonder if maybe she doesn't actually have pmr? (Says she who's been on pred for 5 years!!) She must think all my advice about reducing slowly and adrenals having to get working again a load of old rubbish.
Fast steroid drop in PMR: I have a friend... - PMRGCAuk
Fast steroid drop in PMR
Hello, first or all, is she following any prescribed schedule or taking matters into her own hands? Has she had any medical advice at all on adrenal function and relapse?
It may be she needs to do it her way which will become clear one way or another. Hopefully with the low doses now she’ll fell better and possibly entertain slowing down. The weight is easily managed by cutting down carbohydrates severely, lots of us have managed weight and blood sugar that way.
A few do get off steroids in a year but not many but there’s nothing to say she isn’t one of them. However, at 1mg every 2 weeks it’ll be well under that. I guess if she’s dead set on racing through these low doses no matter what you say will stop her and you need to stand by and be ready in the wings should matters take a turn for the worst.
One in five patients with PMR are able to stop pred in a year or so, a third are off pred by 2 years. However - 7mg is still a fair dose and it isn't unusual for patients to get to 5mg very quickly, the median time to 5mg is just under 18 months so given a fair number take longer, there must be plenty to take the figure down to that.
If you are a person who will need just a few mg the initial tapering will go well. But the lower you get, the harder it gets and the closer youare to that dose you are looking for: the lowest dose that manages the symptoms as well as the starting dose did. The speed she is going she is at risk of overshooting and if/when it happens she won't actually know where it went wrong. Even 1/2mg is the difference between OK and not - and it can take a few weeks to feel it catching up by which time at the rate she is going she will be at a much lower dose.
Let her be and hope you don't have to say I told you so!! Unfortunately, the rheumies remember these patients, not the ones like you and me!
And if she's worried about the weight - cutting carbs will help a lot.
Thank you. I told her to cut catbs and sugar etc at the beginning and also to go slowly for success. You can't help those who won't help themselves said my mother! Will wait and see what happens.
If she's still having trouble sleeping I accidentally found a cure for my lifetime intermittent insomnia. I started taking one of my doses of calcium a little bit before bedtime with a small snack (a bit of plain yoghurt or kefir). Some people have had the same effect from taking magnesium at this time. I don't know why it works but it does. Conversely I've also found now that I don't take any calcium at suppertime I'm much less likely to drop off just before the culprit is discovered in a tv show, etc. So it is something in the calcium.
Magnesium:
psychologytoday.com/us/blog....
then
"Calcium. As well as strengthening bones and teeth, calcium helps the brain use the amino acid tryptophan to manufacture melatonin, which induces sleep. This explains why a glass of warm milk is thought to help you get to sleep, as dairy products contain both tryptophan and calcium."
and
There is an OTC med here in Ontario which I have found very helpful for the not sleeping( plus cramps) that so many of us seem to have a problem with. It is called Night Formula Magnesium 150 mg plus Melatonin 3 mg. It may or may not be available where you live, but worth a try if it is. I have been in the habit of taking calcium after dinner, but in view of what you say I will consider taking it later . Thank you.
diana1998 Diana - see readingbooks suggestion
I was diagnosed with GCA last year and was really quite unwell at the time (so much so the hospital took to calling me at home to see how I was). My Rheumy was really keen to start me on Pred (60mg). In a short space of time my symptoms were so much better but the side effects of the Pred were awful. I am now down to 10mg (6 months later) and hoping the decrease will continue. No issues seen so far, but this is is the most challenging part - now only dropping 1mg a month.
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