I just wanted to reiterate what lots of people are saying on here in the last few days.
THANK YOU!
When you think you have nowhere to turn to, the forum has been so important, I really don't know what I would have done without the advice on here.
I'm not progressing too well, but am ever hopeful that Dorset Lady's taper will start to work for me one day.
Merry Christmas & Happy, Healthy New Year to everyone on here.
Hope my taper helps… but it’s not a miracle [much as I wish it were]…your PMR still has to let it work..
Maybe give yourself a break from tapering [or even thinking about it] for a few weeks - winter is never an easy time..
Thank you, I will do that.
Are you still struggling? What dose have you got to? I'm inclined to think you should have either been started at a higher dose or left at 15mg for much longer - you don't have much of a buffer to be be able to taper as a result. I agree with DL about taking a break from tapering - take the stress about it off altogether. Wait for warmer weather and a less stressful time of year.
Yes I'm still struggling. I got down to 12mg and was feeling fine, trying DL's 5 week taper plan. Previously I was trying to taper on the gp's advice at a drop of 2.5mg, but that didn't work. I am now going to increase to 15mg for 5 days and see what happens as I am in pain again. Hopefully I will be able to go back to 12mg after the 5 days as being on 15mg makes me feel unwell.
Thank you for your concern.
You obviously need smaller drops - 2,5mg and 5mg steps may work in other uses of pred, they rarely do with PMR. But if you are in pain at 12mg now, it really is unlikely that 15mg for 5 days will change that markedly so I would go to 13mg first.
But it may be you need to suffer 15mg in the short term to get lower in the long term. What is the problem at 15mg?
My vision gets much worse, dizziness, brain fog, & constant hunger. I need to be able to drive as I work 30 mins from home with no public transport. I know this is all a big balancing act and realise that I've probably had this for 10 years without it being diagnosed. Reading other people's stories I know it's not going to be a quick fix for me.
I think above all you have to bite the bullet and accept that for a while working may not be an option, or, at least, not sensible. This is a serious systemic illness with effects like flu - you wouldn't argue if someone told you you take time off with flu and this isn't that different except you can't infect others.
If you cut your carbs drastically, that should help the constant hunger and when you need a snack, try protein, cold meat, eggs, cheese. The constant hunger is because the pred triggers the liver to release spikes of glucose from the body stores. This triggers the release of insulin - but more than is needed because the body is expecting a big meal to deal with. So the blood sugar level plummets too low and you crave carbs to bring it back up again. And the roller coaster continues as the liver sends out another random spike.
Thank you, I really appreciate your advice and help. Taking time off is not an option for me as I live alone and only have my income to live with. I will try the carbs reduction, that all makes sense. Thank you again.
Do you not get sick leave? Or are you self-employed? I do know the problems there - although I did always have a husband's income to cushion me. which is cheating really.
No sick pay. It's the way of the world now.
You get statutory sick pay in the UK, even if your employer doesn't top it up. Not fantastic but you aren't totally without income.
PMR is covered by disability legislation - your employer is obliged to make reasonable adjustments to allow you to continue working. If you put up a new post asking about that others, better informed than me, will point you in the right direction.
Re PMRpro’s comments - have a look at this from CAB - very useful site - and maybe raise new post as well.. others have been in similar situation and can advise-
after reading what our experts have said I would like to add that my tapering has stopped for well over a month and hopefully will recommence when it warms up and I feel ready for it.
Thank you, I will try to get my pain under control again, then stop tapering until it's warmer.
Thank you 
Thank you all
Thank you 
Thank you all
