Good morning
I was contacted this morning by my registered GP who I have been with for many years. He gave me some advice which made sense and echoed things I have read on this forum, like 'you are not necessarily aiming for a zero dose of pred' and 'you might need a low dose long term but it doesn't matter how long you take to get there'. I feel there is hope at last.
Lucky you - you would have people queuing to join your practice if they knew where it was!!!! Make the most of him!
Good to hear….
Well, that is good news. Do you think PMRpro and DorsetLady are finally getting through?
I wish!!!
After my doctor's message this morning I spent the afternoon looking at the tapering plans on this forum. Up till now I have been trying to taper fairly quickly. I can see from other members experience that this is often not successful, as I recently found to my cost. I have drawn up a tapering plan based on the ones here, which could get me from my current 6mg to 4.5 by August when I will have been on prednisolone for one year. Could this still be too rapid do you think?
You won’t know until you try…but I’d suggest you take each reductions as it comes, see how the first one goes, and then the second and so on. It’s a plan yes, but it’s not set in stone. Better to take each stage as a one off than have an end date and dose in mind…that just puts unnecessary pressure on you..
Thank you, yes, wise counsel. I will bear it in mind and stay on each reduction as long as I need to to feel well. I am very good at putting myself under pressure, it's how I am, but not always a good thing.
You can taper at any speed - as long as it works! But when it doesn't, you have to pay attention and slow down. You know you have to go slower than you were, and if you drop 1/2mg and after a month feel fine, you can try another 1/2mg. The biggest mistake people make is to start with a fixed plan of a tapering schedule and then try to stick to it. If you do one step at a time and pay close attention to what your body is telling you, you will do much better.
When I started I had this long term plan but life gets in the way. I now aim for 4 weeks but see how I'm feeling, what's happening in my life and take it from there. For example I was in a good place and then due to taper and go on holiday. On advice from my Dr I stayed on the dose whilst on holiday and a few weeks after before I tapered again. It does make it longer but we still need to make the most of life and living.
Not only advice from GP - something we often say. So often I penned this 😊
Wise counsel from PMRpro and Dorset Lady. Thank you both for taking the time. yes. I put myself under pressure but only as a result of becoming a people pleaser in order to be approved of. I am talking about my upbringing and traits I have carried through my life. Sometimes it takes an outsider to help me see it. I thank you both.
What a great GP, he is so positive and understanding. Hes a keeper .
That's good news.
KEEPER!!!!!!
I recently changed my Rheumy as I did not like original one’s aggressive attitude and lack of commitment to the consumer voice anyway I lucked out (I am paying through private insurance and not cheap!) but new Rheumy very much into slow taper - has put me on a plan that takes 4 mths to get to 5.5 from 7mg and also said that I may have to stay on very low dose indefinitely due to severe OA. It is terrible that our mental and physical health is directly related to the specialist we see. At 63 I was keen to get to zero fast too as I am still working and finding the fatigue challenging but now heading more towards acceptance! Take care.
"At 63 I was keen to get to zero fast too as I am still working and finding the fatigue challenging but now heading more towards acceptance!"
But tapering off pred won't have any effect on the fatigue - it is a feature of the ILLNESS for most and whether you get to zero or not, the illness will do its own thing. If you try to get to zero before the PMR has burned out and gone into remission, the inflammation will increase, symptoms will flare and you will have the fatigue of the illness PLUS the problems that the inflammation creates.
Yes totally get it now - I was originally thinking zero was the goal but now realise that that is totally unrealistic and our goal is personal and the slower the better and zero may never be the outcome and we (I) have to accept that.
I was originally thinking zero was the goal but now realise that that is totally unrealistic.
It’s not totally unrealistic for the vast majority of folk… but it has to be in PMR’s timeframe - not yours. That’s what needs to be accepted. You may be one of the unlucky ones that never gets to zero , but on the other hand😊
A friend just saw a rheumatologist for PMR relapse after a few years off pred, and said the rheumatologist was carefully explaining why you shouldn't drop a whole 1mg at once on the lower doses. I thought yes! advice I first read here 🙂 ... nice when theres agreement ...
Hallelujah - they can have honorary membership of the forum!!!!
Reduced symptoms...what are we going for here?
? Beginning to have a flare. What to do?
Increased Pred made a difference but not there yet
What a year! 
Too big a taper of prednisolone? What are the symptoms?
