I am pleased to say my doctor has agreed I can do Dead Slow Taper despite him finding it hard to prescribe. I had an appt this evening but had emailed him the copy & pasted method so I didn't need to spend too much time explaining. I will need to email him with my requirements each time so he can prescribe accordingly.
I have found I am not bouncing back very quickly now at each reduction and 2 weeks into 11mg am already not looking for to another drop in 2 weeks time as I haven't really recovered from the last drop.
I wondered how other's doctors manage this....is it different in UK or other countries (I am in France).
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IdasMum
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The more enlightened ones have a "plan" agreed with patients, but are willing to let the patient take the lead on reducing according to their symptoms.
Early days I only reduced after bloods done and okayed as agreed with GP. Mind you she was the one that missed my diagnosis for 18months so was a bit paranoid!
Later on at lower doses and with different GP, he left me to do my own thing - almost, and just touching base with him when I felt the need. I arranged my own blood tests through the surgery every 2 or 3 months and provided okay reduced as I though fit, using a slow method that took 4weeks to get from one dose to the next.
I think like most things it depends on the individual GP, and maybe how much knowledge they have of GCA.
What I would say is, if you don't feel confident that your symptoms are controlled, then don't reduce! Despite what doctor says.
I get 2 months worth of each dose - 2 bottles of 5mg, 2 bottles of 2mg and 2 bottles of 1mg. Mix and match as required and request refill when getting towards the end of any. That's Italy. In the UK my doctor prescribed a few hundred of each dose - as it was intended to keep me going for 6 months. I was/am trusted to use them properly as I have told them I am going to. But if I have to raise the dose - there is never any argument.
Hello, started Pred May 2015 for PMR after very efficient diagnosis from GP, visited Practice in that August and got told off for for still being at 8mg daily rather than 6mg daily ( started at 40mg!) that's after I got scared having jaw and scalp pain. Saw very sweet locum a month later who kindly prescribed calcium/vit D and and 1 mg tablets and since then haven't been back- down to 1.5mg pred daily, actually feeling good now. Rode horse throughout, had some brill hols (and mighty fatigue) and now back at the gym. Just hope they will continue to sign for the next 100 pred 1mg...hoping not to need more after that🤞Keeping my head down and doing my own thing.
I don't recommend this approach but I just followed advice in this forum re reducing and seem to have done ok just collecting the prescriptions! I used to order 5/2.5or 1mg as I needed and would get 100tablets of each at a time. Not sure about the system that lets you continue to pick up prednisolone when you haven't been seen for over 18months but works for me. I liked to review my animal patients every 2 or 3 months at least!
I would have been very lost without all the help here. Many, many thanks.
I am in UK and my GP will only prescribe a month's worth of medication at a time. It's a real pain to manage, to make sure I don't run out, and a huge chunk of my time seems to be spent counting out pills! Our "system" is that, when I request a fresh supply, I indicate what dose I am currently on, so that she can judge how many to prescribe. It's an imprecise science to say the least! I've tended to request the full range of strengths (5mg, 2.5mg and 1mg) at the same time, as I would otherwise have to be spending time estimating forward for some plan that might or might not work out.
I get very frustrated by this approach, as I don't see the sense in it when it's agreed that I'm likely to be on this medication for quite some time to come; and my GP ought to know by now that I've always been a reluctant pill-taker.
Interesting. It sounds like not all the UK is doing the same thing. A bit like France where very rarely do different areas sing from the same hymn sheet.
It would be great to have 2.5's in the mix, so annoying to be dealing in 5s and 1s.
I use a Dosette type box for one week. Will buy myself a monthly one so I can get the slow taper dosages all loaded on a good brain day
I'm sure you've worked out how many 5s and how many 1s you need for a month, if your doctor will only prescribe a month at a time, but why not ask for a whole month at the higher of the 2 doses, such as 11mg x 28 this month and 10mg x 28 next month and so on, then you'll have a few in hand each time! (I can order 120 x 1s each month and 56 x 5s every 2 months on my repeat request, even though I'm now down to 7mg.) Remember to ask for enough 1s in the mix, to cover your taper from 10mg to 9mg! Hope this makes sense. Other doctors probably trust their patients not to take more pred than they need! If I build up a small stash, then I'll just ask for less when I get down to the lower doses.
I hope you'll soon be feeling better on whatever dose suits you.
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