Good morning
I realise opinions differ but I would be grateful for any input on my question which is this: I have reduced P from 15 to 7.5 in 6 months. Would it be reasonable to allow up to another 12 months (or more) to reduce a quarter of a mg every 2-3 weeks and possibly take another year or more to get to low levels? Just wondering as my GP seems a bit tired of my questions 🙄
Reasonable in what way? If it keeps you on the straight and narrow it’s not too slow. 0.5mg per month sounds like a steady pace to me. Due to my low adrenal gland response, under 5mg I had to go slower than that. You can’t know for you until you get there. What are you feeling like at the moment? It might be less of a jolt to add the new dose in gradually rather than step down to 100% new dose from day 1. Have you ever tried the Dead Slow Nearly Stop approach? It’s in the FAQ’s.
How is the GP showing they are fed up with your questions? What have you been asking?
Hi Snazzy, just thinking out loud really. I've read some inspiring posts from members who have taken a long time to reduce to a low level. My GP and my endo seem to want me to do a rush job and I never went back to the rheumatologist who wanted a 2.5 reduction every fortnight 😯I'm actually feeling quite good thanks since going from 7.5 to 7.25, so long as I pace myself. I know when I've overdone things 🥴
Yes I've seen the DSNS but not tried it so far. Would you recommend it?
I do want to get off P, when the time is right. One of the GPs (not my regular GP) implied I was being uncooperative when I didn't want to drop 1mg every 2 weeks, a sort of 'don't you want to get off Prednisolone?' approach that reminded me of my mother's reprimands 😒
My best wishes to you, GG x
Well, you’ve come leaps and bounds along the PMR learning road from the sounds of it. Whenever I got a telling off I said that my dose trajectory was always down so that had to be good and better than yo-yoing.
It probably isn't worth asking the GP - few doctors really understand the need for slow tapering. You can taper at the rate YOU can taper - and if that works for you, she should be satisfied. From 10mg it should be 1mg/month maximum, 10% of the current dose. As you get towards 5mg it becomes a greater % but most people do OK. At 5mg dose, 10% is 1/2mg/
As Snazzy says, 1/2mg per month at this stage is perfectly reasonable - how you arrange it is up to you and what works for you. You don't have to keep asking for permission - just do it.
I realise this Pro but my inner child still expects a reprimand if I don't toe the line. It's not logical, it just kicks in if I am challenged by authority. It makes me sad 🙁
'You don't have to keep asking for permission - just do it.'. Ok 😉
Try to understand our info will rarely change and we also won't tell you off for trying something different. All sorts of thing change when put into a different context - and that GP was wrong in THIS context, So - the easy answer is not to ask them in the first place!
But the problem is the GP controls the Pred prescription so you HAVE to do it their way, even though they are often wrong. The best way I've read about others doing is to print off the slow reduction plan and tell teh docotrs it comes from the charity so it has credibility and then they might lilsten to us patients. Or be lucky enough as I am to be under a good rheumie who understands how PMR works and trusts me to know what's best.
I was given a STUPID reduction plan some time ago which involved alternate days without any pred! I wrote directly to the doctor explaining my concerns and suggesting my own plan which was accepted.
Unfortunately this appears in 2009 guidelines- on the charity’s website -
This is tapering regime from guidelines -
The suggested regimen is:
. Daily prednisolone 15 mg for 3 weeks
. Then 12.5mg for 3 weeks
. Then 10mg for 4–6 weeks
. Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5mg alternate days, etc.)
So what hope do we have!
That's what I was given last August and again from the Rheumatologist in November 🙄It's not what I'm doing now but I'm going to stop updating them unless they ask 🤐
Agree! Barely marginally better than what was suggested for me:
Ugh, what planet are they on? The schedule DL shared above made me ill and had to be revised, yours would as well as I am very sensitive to meds and have to tread carefully. My endo wrote to my GP about this but I think the letter must have conveniently got lost 🙄 I dread to think how I could have ended up if not for this forum 🫂
Does make you wonder if there’s a planet far, far away where all these “Professionals” are squirrelled away and bent on making life difficult for us. This forum has given me confidence to advocate for myself on the two or three occasions I’ve needed to and I don’t begrudge a penny of the membership fee that is vital in keeping PMRGCAuk running for us.
No, not a lot…
I'm fortunate in that I have pred 5, 2.5 & 1mg on repeat. So long as I don't over order I just request what I need when I need it.
I think it depends upon what your PMR thinks. GPs, Rheumatologists and others may want you get to off prednisolone quickly (and yourself to be sure), but most of us have found out the PMR has a mind of its own. If you do try to speed matters up with tapering down, PMR is very likely to come back and bite. Try not to have expectations about when you may get to zero! Chances are you would be disappointed.
I, for one, strongly recommend the DSNS reduction method, which certainly worked for me.
Good luck.
Thanks Charlie, for your wise response. I don't was my PMR to bite me.I will look as DSNS. GG.
👍
Come to think of it 💡my aunty was ill for about 2 years when she had PMR and recovered completely and went on to become a renowned archaeologist and lectured across the world.
If it was me, I think if I was asked to drop 1mg every two weeks, I would bring the semi-official rheumatology society guidelines my GP is using .... 1mg every 4 to 8 weeks and ask why they want it so much quicker and what the risks are. And advice from the forum too. My GP told me about the charity pmrgcauk so I feel they should be willing to listen to it.
I have always been ok reducing by 0.5 at a time down to 4mg.
Any advice please?
Has anyone had a massage while on pred?
conflicting opinions …
When other people's opinions Count
Advice please
