Withdrawal symptoms on reducing pred from 10 to 9 mg

Hi Tricia.   I was on 10 mg for about 8 weeks.   The thought of being on pred for at least another year is horrible.  Good luck!

I Sympathise I was on 10mg for about 2 months then reduced to 9mg then did the slow slow to 8mg and sat there for a couple of months then down to 7mg and whamo! the pain in my joints increased to unbearable and  made it impossible to even use the pepper grinder so now I've gone back up to 10mg.  I tried all different times to take the pred but nothing seemed to work so here i am starting again and it looks like I'm getting sugar diabetes as my last fasting test was 8.2 not sure what that is in the different scales used in USA a pity all countries don't use the same scales for the results, but mine was a bit high so have to change my diet even more radically and that is why I want to try the Lodotra form.  Wish me luck also and lets hope someone clever is doing more research to help us all along

There's no certainty that Lodotra would change that - it is pred too, what it does do very very well is makes the mornings better at probably a lower dose.

But remember you are not necessarily reducing to zero - if the underlying autoimmune disorder is still active you will need some pred to deal with it. After a week at 10mg and if the symptoms have gone you can start to reduce back to 8mg since that was obviously enough before the flare that the 7mg allowed. 1mg at this stage is a dose change of 17% - quite a lot. I found even 1/2mg over 2 days would allow a flare!

In the great scheme of things a fasting of 8.2 IS high but not desperately so - we've had people with levels into double figures, as much as 20, after going onto pred! 

Have you ever looked at "Diabetic mediterranean diet blog"? Written by a doctor with a lot of sensible info about keeping carbs down.

Thanks Eileen I'll look at the mediterranean diet blog you suggested.  By the time I got to 9mg I was reducing by 1/2 mg every two weeks and probably missed my optium dose, however I noticed my joints were getting progressively worse from about 8.5mg so I'll try for that next time and stay put for a while.  I realise Lotodra is still a pred but I liked your suggestion that I may be able to get down to a slightly lower dose using this form. My DR said today he had a big increase in patients with PMR/GCA over the last few months and is wondering why.  He also told me one of his good news stories that one patient only had PMR for 6 months reduced the pred quite quickly 1mg every 2 weeks and 18 months later has had no flares.  This is definitely what I would wish for for everyone - if only we could study her in fine detail and see what are the differences.  Love to all

They possibly didn't have PMR - there are other things that can mimic PMR and which will apparently respond to pred but would have disappeared in a similar time period. This is one of the warnings issued to GPs - some experts will suggest one criterion should be that the symptoms have been present for more than 6 weeks.  Misery-guts that I am, I am very sceptical when a doctor says I have this miracle story - she may be one in a million. 

I'd say go carefully from 10mg, spending a month at each dose at least. The symptoms may have become obvious at about 8.5mg but the speed you were reducing at the right dose could have been 9 or even a bit higher because it takes time for the level of inflammation to build up enough to cause symptoms.

He's seeing abig increase in numbers is he? That means the work of the last 7 years, started by 5 strong minded ladies and now with a few more in tow, is achieving its objective: to boost awareness amongst both doctors and potential patients. There have been media articles and groups doing research are also educating doctors - and that means patients are being diagnosed with one or other or even both where before they might have been dismissed as heart sink patients. Younger patients with PMR are often told they have fibromyalgia or depression (depressive mood is part of PMR too) or "it's all in the mind"/menopause. Older patients often just assumed they had to accept becoming older and it was part of the again process - after all, half of patients over the  age of 79 develop PMR!

Rats - that should, of course, have read "part of the aging process"!!!

The things you learn on this site   Really 50% of people over 70 develop PMR then why have we not heard about this before a few years ago.  Those poor ladies who had to put up with misdiagnosis for all these years, they have my sympathy and I am now feeling ever so lucky.  That said less people develop breast cancer and they have ever so much money spent on research ( as they should) so we need to get this funded somehow - I'm so fatigued all the time and raising awareness needs energy.  I take my hat off to those who have put in the effort for us to come this far

No, the 50% is at age 80 (over 79). Why haven't we heard about it before?

Well, I don't know about you but what did your GP say when you first went along complaining of aches and pains and stiffness and tiredness? A lot are told "what do you expect at your age?". If you are younger you are told it is still "your age", i.e. menopause, or if you mentioned the depressed mood that is part of PMR it is likely to be assumed you are depressed. Or if none of that fits, it is probably fibromyalgia and there is no cure - a different illness and there are ways of managing it too. And when you keep going back then you become the "heart sink" patient, difficult and unwanted. 

It is a disease of "the elderly" - that means you are over 50 by the way. Three times as many women suffer from it as do men - so the vast majority of patients are over 60 and female. So they are retired - there hasn't been an economic argument about loss of workforce until now as the retirement age is rising. Our generation is a bit different from our parents' - we expect to feel as well at 60 or 70 as our mothers did at 40 or 50 so when we don't we want to know why. Until very recently it was assumed this only happened in "old" people, 70 years old or so and there are still doctors who believe that. According to the literature, the average age of patients is 72. If most over 75 year olds have PMR it means that there must be a fair number of under 60s to obtain that figure - but they have been ignored as having something else as most doctors don't actually understand statistics and the bell-shaped curve and "normal ranges". 

And let's face it - when you have PMR you are too knackered to do all the hard work and lobbying required and once it goes away you get on with catching up what you missed!

Thanks Lodger!  It must have taken you ages to type all that, i appreciate it!   Will look at both the options and try one of them.   Many thanks to you!

Big Pharma also takes a lot of leaves out of medieval herbalist books! Look at aspirin...

I agree Ptolemy!  Unfortunately i am off alcohol at the moment, otherwise it would have been lovely to have a small glass of Armagnac !!  Or even a large one !