reduced preds

Vanessa, it can take some time for the round face side effect of the steroids to subside.  It can vary from person to person, and in my case I found improvements didn't start until well below 5mgs.  You may not have to stay at 10mgs for as long as 6 months (in spite of some latest research to the contrary).  Again, this varies from person to person.  I was able to reduce by 1mg a month from the 10mg point, but stumbled from 5mgs, from where, following a flare, I had to remain for 6-7 months to stabilise the inflammation.  So it's a case of everyone finding the  maintenance dose that suits them.  Some people find the best way to do this is to reduce in just half a mg steps, tapering slowly, so that it is easier to see at which point the inflammation may be resurfacing and get on top of it quickly by an increase back to the previous dose.

I think you should consider yourself one of the very lucky ones if you have "no pain on 10mg".  That was something I didn't quite achieve until I reached the very low doses (well below 5mg) over some 6+ years on steroids.  I do hope you continue to do well.

The roundness of your face is because pred causes your body to lay down fat reserves in specific places: face, especially cheeks and under the chin, around your middle and on the back of your neck. It will go eventually - I'm down to below 5mg and my face is back to normal. I really noticed the difference from 10mg but it depends on the person. Some people lose some weight from higher doses, others have to be off pred altogether before they really notice much difference.

The recommended starting dose for PMR in the UK is 15mg. It was chosen because they looked at patient records and decided that was enough  to get a good response for the majority of patients so using more was mostly unnecessary and only made the total dose taken during the course of the illness higher and they want to avoid that. In Germany they often start at 25mg and give methotrexate from the start. Here in Italy we are given pred but I don't know for sure what dose, also 15mg I think. A study in Genoa (Italy) found that 12.5mg achieved a good response in threequarters of patients within a month - 15mg would achieve a result faster. 

Australia seems to have some strange ideas judging by the posts we have had on the forums in the past - and I imagine PMR is much less common there as well so they don't have much experience. Many patients there only ever see a GP and GPs do often struggle with management. If her symptoms have resolved OK then there is no problem with 10mg - but for many patients it simply wouldn't be enough to achieve a result and they might be then told it isn't PMR - unless of course the doctor is prepared to try a higher dose if 10mg doesn't work. My experience is that starting low and working up tends to not achieve a clear cut effect - though that does tend to be in patients having a flare after an initial good response.

Right at the start of me being on pred (after 5 years of PMR) I was given 15mg for 2 weeks, 10mg for 2 weeks and 5mg for 2 weeks. The 15mg was a miracle and I was also fine on 10mg. At 5mg it was OK and had I been left at somewhere between 5 and 10 I believe I would have been fine. But the consultant was fixated on it being another inflammatory arthritis despite the dramatic effect of 15mg (he refused to listen to my report) and having stopped the pred and having to start again it was more difficult to manage the symptoms. I never was able to get below 10mg again until I used the very slow reduction I post all over the place. After that first 2 weeks my body hadn't become accustomed to the pred so there was no steroid withdrawal problem to deal with. 

The Bristol group recommends getting from 15 to 10mg over 3 months as you have done - and then keeps their patients at 10mg for a year before continuing the reduction. They find this results in fewer flares - 1 in 5 patients instead of 3 in 5 patients which is the normal expectation with other reduction plans. I suspect their flares mostly come below 10mg as they reduce 1mg at a time - and we suggest that spreading the 1mg over a few weeks can avoid these flares. 

Yes, I think it is not uncommon to feel less well at a lower dose, especially for the first couple of weeks until your body gets used to the new lower dose (another reason for speading the drop over a few weeks). When I reduce I do find I feel different on the day I take the lower dose for the first few times - but because it is only one day and followed by a few days at the old dose it isn't a problem. By the time I've taken the new dose a few times the feeling has gone. You can imagine though that if I took the new dose every day it might be more obvious and probably worse, even mimicking PMR. That was what happened in the past when I attenpted a reduction and the natural response was to think it was a flare.

Hi Vanessa

i started on 15mg a year ago and now on 10mg as I was advised to reduce slowly. I feel ok but possibly not as good as on a higher dose. I have put on weight and my face is puffy. I was advised now to reduce every two months.

i also read to try and cut out carbs where possible as I have put on 8 Ibs. I am always hungry which is a problem. I now drink soda water with ice and a slice of lemon to fill me up. Could be worse!

Hi Vanessa,

The round face is very distressing,maybe for a woman more so.Can I say that without being sexist?? I am a man and when I look in the mirror I am shocked at how I look. I am on 5mg and just started a carb free diet at Eileen suggestion/advice.Already I feel more alert and less languid.I didnt realise that what I took to be normal,was in fact,far from feeling normal.

WE all need to get below 5mg ina very controlled tapered way.So half an mg monthly should get us there. Stay positive.You will be beautiful again in no time.