Reducing steroids

One of the things I find confusing on this forum is the notion that people's reduction or increase is not restricted by the amount of actual prescription. As I posted elsewhere, I had to jump through hoops just to get a GP appointment at this "coughs and sneezes " time of year and initially it was indicated that the doctor would not overrule the Rheumie instructions. I am prescribed for 28 days at a time, and that's that. The very useful advice confirmed by the pharmacist that they can supply 1mg tablets of prednisolone has armed me for when I go back to the hospital next month. I realise this is not an exclusively UK website so wonder if this is a factor?

[Runrig01]

How unfortunate, my GP has my Prednisolone on repeat prescription. I get 200 x 1mg tablets, and 100 x 5mg tablets at a time. Then reorder as necessary. I also have permission from both Rgeumy and GP to adjust as per symptoms within reason. I was always advised to carry extra in me at all times and take high dose if I developed visual symptoms. Good luck at reasoning with your Drs.

[optimist-ok]

Similarly, I have a repeat prescription with the chemist & any adjustments needed are sorted out by them with my GP. I collect monthly from the chemist. The steroid amount does vary according to symptoms & if I need to increase the dose this is provided for. Good luck with your problem, it is a difficult situation but it is important to have enough medication & some to spare.

[Angela123]

I'm the same Jan. I just get 28 days at a time and I can't order any more until a week before they run out. Otherwise it's an appointment as you say, and then they don't like overruling the consultants instructions. Sometimes my Rheumy gives me an extra prescription if we are changing the dose to put me on.

[DorsetLady PMRGCAuk volunteer]

Hi Jan-k,

I seem to be very lucky with my prescriptions. Have had diagnosed GCA for three years. Saw a rheumatologist once, six months in, not interested, said Id never had PMR - what were those pains for 18 months then? Thought I had a frozen shoulder and offered to give me cortisone injections for that as he was much more experienced than my then GP! Decided I didn't need his input!

My present GP has left me to decrease my Pred as I think fit, with a blood test every three months, although he places more credence on how I feel than the blood readings. My tablets are on monthly repeat (5mg and 1mg) and I ask for what I want, when I want them. He doesn't want to see me unless I have a problem or the blood test are out of normal range, although he always says 'just ring if you have a problem' .

I realise that I am three years (well actually nearer five) along, and therefore am more confident to take control.

It seems to me reading lots of posts that there seems to be more problems with prescriptions when hospital consultants are concerned, as the GPs have to defer to their views when it's the GPs who see the patients more often, say once a month as opposed to every six months. As we know things can change quite quickly with PMR/GCA and therefore dosages altered. Hope you get things resolved. DL

[PMRpro Ambassador in reply to DorsetLady]

Mercifully, when I had a prat of a rheumy who insisted it wasn't PMR despite textbook symptoms and response to 15mg pred (6 hours, probably less but i was working sitting down at the time) the lady GP at our practice told me she believed me and had I gone to her earlier she'd not have bothered referring me. My "usual" GP couldn't cope with "normal" blood test results so had insisted I had to see a consultant. Said lady GP had been on maternity leave originally - but came up trumps, handing me enough pred to cover me at a maximum dose for 6 months since we spent large amounts of time at our flat here in Italy.

You have to sit down with your GP and discuss it sensibly. If one won't play the game, approach another. They need to learn that PMR is a chronic and variable illness and fixed rules simply don't work. I know the problem though - my granddaughter needs 20mg/day to prevent asthma that has her in the resus room far too often. The GP will only hand out enough for 1 WEEK - coming here on holiday recently was a nightmare getting enough pred. And all too often they get the repeat prescriptions wrong - and as we all know, missing a dose at that level is going to cause serious problems. It is nothing other than pigheadedness.

[Annodomini]

No problem here either. I have 5mg and 1mg on repeat so that I can adjust the dosage if it seems necessary. On one occasion, I managed to leave them at home when I went away for a week. Fortunately, I found an out of hours doctor who looked at my prescription and gave me a month's supply without quibble. I now keep a supply in my suitcase!

[suzy1959]

I am also lucky to have a very supportive GP and have all the denominations of Pred. on repeat and can have them whenever I request them. My GP also prescribes 2 months' worth at a time, so I always have enough no matter what ( as long as I remember to request them!)

[Hidden]

Further to the above, the Rheumatologist agreed to leave me on 5 mg a day pending removal of my gall bladder in case that was the trigger for my worsening skin problems. I am without pain by and large but the blood tests indicated that I am not yet out of the woods, and I am struggling with keeping my blood glucose reading within bounds. Apparently all these things, pmr, gallstones, are more likely with type 2 diabetes. They tell you about feet, eyes and kidneys but not all these possible side effects.