As some may remember - I relly struggled from 15mg to 12.5 and in fact it took me moths to get down to 13mg. Consequently I have an array of
unwanted side effects.
Went to a new Rhuemy and she is suggesting I stay on 12,5 for two weeks - it has been a week and I am fine on it - she says I should then go 12.5 one day and 10mg the next for a few weeks then do 12.5 and then 10mg for two days for a few weeks and so on to get down to 10 by the time I go back.
I guess I should give it a try as the buffello hump looks awful and feels it too, as well as facial hair and osteo is getting worse.
I felt a bit embarrassed when I said I wanted to follow the Bristol guidelines - she smiled and said she was part of the study and co wrote the paper. Dr Quisk. I hope that means ashe does understand how important it is not to rush things
Are you on enteric coated pred? Do you have to go in 2.5mg steps? She's got the idea about slow - 1mg at a time that doesn't fail would be better in my experience.
But lucky lady - you have a rheumy who has some idea! Why embarrassed? She should have been impressed your internet seeking brought up some founded information!
The buffalo hump WILL go, honestly, so will the facial hair. I used my Braun epilator very successfully to deal with that in the meantime. Adopting a scarf is a brilliant disguise for the BH, as is a shirt with a collar.
Hi Eileen,
Yes I am on the enteric coated pred, although as you know, I have had to use some of the white ones in the reduction. I am with her in that Id like to get down to 10mg but my last attempt with a bigger jump left me with nausea to the point I could not function.
I had really bad stomach pains on the white tablets. My GP took a lot of persuading to let me have the coated type. Each time he prescribes it he complains about the cost and says there is no evidence these make nay difference to which I reply: I am evidence for a start. I tried a PPI and it made me very unwell.
Anyway, she said that if I had 10mg one day and 12.5 the next, Id effectively be taking 11.25 a day and a drop of 1.25. She thought this better than using the white one’s. I guess I could give it a try but, she had said do that for 4 weeks then stay on 10, whereas I was thinking of maybe doing that dose system, but using your plan so its every 6 days and so on and then reversed till its every day. I have until I go back in about 10 weeks.
I felt embarrassed because I had been rattling on about this paper before she got a word in and was able to tell me she co-wrote it. Sorry about all the typo’s above – my keyboard has a life of its own. I meant Dr. Quick. She is quite young and very enthused at this stage.
I use an epilator every day now (use to be once a week anyway) and am not comfortable in a scarf or anything around my neck as it irritates me. However, I am growing my hair to shoulder length and hope that helps. As for all this excess weight around my middle, I attribute my large breakfasts to that which I have to protect my stomach. I used to have one rich tea!!!!
By the way – before this PMR I would always start the day with a cup of tea…then I thought Id better take the pred right away in the morning and not wanting to melt the pred, skipped the tea. I missed it so much and have just started to have tea first thing. Does anyone else do that?
Sorry Jennis - I'd forgotten that! Your GP is being a prat - enteric coated isn't "much more expensive" - you're talking about several times a few pence, it's hardly megabucks! And a pharmacist told me that as soon as the NHS made the recommendation to stop using enteric coated the manufacturers put the price of ordinary up so the difference in price is much less than it was. Also, many GPs didn't realise until they wouldn't give patients enteric coated just how many people have stomach problems with ordinary pred and said they wished they hadn't agreed. I don't quite understand a system that happily gives a patient ordinary pred plus a PPI that both have the potential to cause stomach problems and other things rather than a single pill that generally causes no problems.
As for the cup of tea - it won't "melt" the tablet, you need some fluid to wash the pills down anyway and the coating is designed to resist the stomach acid so it passes through to be absorbed much further down the gut. It'll resist a cup of tea! I COULDN'T start the day without my 3 cups of tea (brought to me in bed by my husband ;-) 
That, of course, also means you don't need a large breakfast to protect your stomach - the pills don't irritate the stomach wall, that's the point of them. Keeping the amount of carb you eat to a minimum also helps the mid-riff waist gain - no rich teas! Contrary to popular opinion, the body doesn't need carbs to function, when deprived of carbs it starts to use the fat deposits to produce energy, it takes a few days to get into that mode and that is the cause of the bad breath and other complaints that were made about the Atkins diet. I'm not advocating a totally carb-free diet for all but I have cut my carbs drastically, almost no bread, cakes or pasta, and eat tons of salad and veg. I've lost weight steadily if slowly whilst still on pred (about 2 lbs a month) and the first place was round my middle. 15kg and counting! I started when I was still at 15mg pred (after 3 years on pred) and am down to 5 now.
Where is Dr Quick now? I tried to look her up but only got the paper.
Yes - I suggested to someone else that this plan would work for 2.5mg tablets by starting with a fairish gap as you say. It's a question of allowing the body to accept this lower dose isn't too bad after all. I've been struggling a bit to get from 5mg to 4mg but after a few weeks at taking 4mg 1 day in 4 I think it's getting there. That's a 20% drop now, it gets worse and I can't cut my tablets either - at least I have 5, 2 and 1mg ones. Your doc could complain about my version of pred - £25 for a bottle of 30 tablets, whether it is 1mg or 5mg, so when I need 3 tabs to make up a dose it is £75 a month. A trial is to be started trying it in PMR in the UK, it is already used in Germany, I do hope it is approved as I think it is brilliant but I can see there being great resistance from GPs when ordinary pred is so cheap. Other research is for monoclonal antibodies - and they cost megabucks so I really don't see the point, we'll never get to use them, the cost will be too high compared with the current regimen which is probably about £50 for the entire length of treatment!
Hi Jenni, and I agree with Eileen, a cup of tea first thing isn't going to interfere in any way with your Pred dose afterwards.
Like you, I experienced horrendous side effects from the PPIs (to my bowel in my case) and they were given very short shrift. Instead I stuck to eating a 'live' yoghurt with my breakfast of muesli with added chopped apple and Manuka honey, in the belief the natural bacteria in the 'live' yoghurt would line and protect my tummy from the steroids. This worked a treat and I didn't experience any further stomach problems. That could help if you experience any more nausea in the future. Meanwhile, enjoy that early morning cuppa!
Hi Jenny
Don't know if you are the person I've been meaning to contact for a cup of tea?? Anyway, I too can only take the enteric coated tablets but have successfully got down to 2.5 every other day so it is possible, but, of course, different for everyone.
I attended a lecture by Prof Dasgupta the other day in Taunton and asked a question about reducing when you can't take the 1mg tablets. He said it is possible to have injections instead. I mentioned this to my GP and she said she hadn't heard of them and that I would probably need to get that through a Rheumatologist. I have never seen one.
Prof Dasgupta also talked about new guidelines for diagnosis of PMR, including ulrasound scans which are being carried out in Southend where he works. Also a fast track referral for suspected GCA similar to the urgent referral for stroke victims.
Hope you are getting somewhere. All the best.
Beev
Thanks for all your replies - I now have my cuppa again :-)