Starting steriods

Hi jill58546

15mg is normally the starting dose for PMR only, and usually 30mg sometimes higher dose for PMR and GCA together. How long were you to take 20mg before going up 5mg? What was the time period before getting to 30mg. I was prescribed 15mg initially and it took approx 7-10 days before the pain abated....

I started at 20 then had to go to 30 for 3 weeks then back to 20. I am at 15 now.

I take it you have only been on pred for 2 weeks?  You are already at a high starting dose and if it is "just" PMR it would be better not to keep creeping up unless you have any signs or symptoms of GCA and then you could well need more.

Did you get a fairly quick 70% improvement in symptoms over all? There may be some pain left at first, especially if you have bursitis (hips and shoulders) or tenosynovitis (usually hands and feet) as those areas don't have good blood supply so take much longer to resolve, for me it was heading for 6 months. Many people are never totally free from pain - some of the pain we have is not directly PMR and it isn't always magicked away with pred. One cause of pain along with PMR is something called myofascial pain syndrome - caused by the same inflammatory substances as PMR but they are localised in trigger points in shoulders, about waist level and in the low back and take longer to respond and probably need higher doses of oral pred to do so. There are other ways of improving it. 

And I have to ask - did she mean KEEP increasing 5mg at a time or did she mean try 25mg as that is the top of the range of recommended starting doses. for years they have used 15mg and fought tooth and nail when it was suggested they use more! If it isn't managed pretty well by 30mg then she needs to put her thinking hat on - it may not be PMR as we discuss it here. When higher doses are needed than that, it often means something else is going on, including large vessel vasculitis or GCA.

Yes you WILL get to a lower dose but it will take patience and probably some lifestyle adaptations. If you have taken your pred and then tried to carry on as normal you will almost certainly have problems. Your muscles remain intolerant of acute exercise because the actual disorder is unaffected by the pred, it just manages the symptoms to allow a decent quality of life. The real underlying illness is still going on, attacking body tissues and causing symptoms rather like flu. You have to adapt to a new normal - and it is worth it as PMR lasts for years - anything from 2 years up, a median of 5.9 years.

Hi, my story is that I started about one and a half years ago on 15mg and within a day or so the aches and pains reduced by say 80%.I then reduced as fast as possible and in say 6 months was down to about 5mg. Then in the next 6 months was down to 1mg or so.I then kept trying to do without but after a day or three had to take one. However I have now not needed any for a few weeks. I still have some aches but hopefully can continue to do without - I am say 95 to 98 per cent better than when I started the steroids.

How are you taking the medication?  Recommended is to take it in a single dose early in the morning, always with food.  Don't take any calcium supplements at the same time as they interfere with each other.  Calcium supplements can be taken at other mealtimes.  Heed Eileen's suggestion to rest.  You have a serious systemic illness and need to treat yourself gently.  Get some outdoor exercise every day if you can, even a walk will do, but go easy otherwise to begin with.

Diabetes does require careful monitoring, and a very strict very low carb diet will help keep sugar spikes to a minimum.  Others on here have dealt with pre-existing diabetes + pred and hopefully they will be along soon to describe how they've coped.  

Hi Jill I am so sorry you have been diagnosed with PMR. 25mg is really the top starting dose although some may need to go to 30mg. The trouble is larger doses can cover up other things that are helped by pred. If you take pain killers does it help the pain? If so it might mean you have something else too as PMR is really only helped by pred and nothing else.