After recovering from a flare, Ive been tapering very slowly down from 12 mgs preds, now midway between 10 and 9, and not doing to badly. When I was diagnosed in April my blood results very high, but after a month they have been down below normal.
My GP insists that I should now reduce my 1 mg a week, go through the pain and continue down. I read a similar qyestion on the forum yesterday, it seems to be something coming from the Nuffield? Has anyone any further details.
No one should dictate your reduction. Go by how you feel and what your body is telling you.
My personal experience, following a flare, has been that I can only tolerate drops on .5 mg every 1 or 2 months depending on what I'm up to. I do a lot of travelling and have to hold at levels for longer periods than if I stayed in one place.
.5 drops began at the 12 mg level in my case. I've always been very sensitive to medication.
No - not 1mg per week - at the most 1mg per month!!!!! And a lot of people can't even manage that. Where do they get these ideas! After this long on pred you need a slower dose reduction than that just to allow your adrenal glands time to recover. And your GP appears to have no idea what PMR is.
PMR is a chronic disorder, it is the symptoms of an underlying autoimmune disease that causes the immune system to attack the tissues and cause inflammation. Nothing will change the autoimmune disorder, all you can do at present is manage the symptoms until the underlying autoimmuneproblem burns out and goes into remission. Unitl then, there will be a daily dose of new inflammatory substances - and to manage the inflammation they cause you will need some pred. As long s you are taking enough the inflammation will be wiped out each morning, there will be no inflammation and so no symptoms or reason for the blood markers to to be raised so they will stay low. If you reduce slowly and carefully you will find the lowest dose that manages that - and that is where you hang around for a while, always testing the water a bit every so often, trying to reduce another 1/2mg (below 10mg) and eventually you will get even lower. Eventually you will probably get down to zero - for 75% of patients that will take between 2 and 6 years. Occasionally people manage to get off pred in under 2 years - but they are at a greater risk of relapse at some later date and having to go through it all again.
If when you reduce you go below the dose that is required to manage the inflammation - you will get the PMR symptoms and pain again. So there is no point at all trying to force your way through the pain - the PMR symptoms will be back in their full glory. The pred hasn't cured anything - so there is no point in reducing the dose below what you need.
I can only suggest you go here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and print out the "Bristol paper" and give it your GP in an attempt to improve his knowledge base about PMR and how to manage it!
Where did you see that that seemed to come from the Nuffield? I don't remember seeing it on this forum.
I think Jancorb maybe saw on my posting about research into Vasculitis which gave Nuffield in the address....
Also maybe saw that I have to reduce 1mg a week to 5mg to be investigated further (adrenals?) after xmas.....not recommended normally I agree....
I think your GP may be muddling PMR up with something else. As PMRPro says 1mg a month reduction perhaps, but half a mg a month works really well and you should not get the pain. I cannot believe it was suggested you should go through the pain. Wait until your GP gets PMR I bet they change their ideas then!
Hi all, he certainly said 1 mg a week, but I won't be doing that
. I'll carry on with the slow taper, which is about 1 mg every two months.
I don't see the point of any faster the PMR will still be active.
My other problems are weight gain, that is 2.5 KGS in the last two months. So I'm seriously fighting the urge to eat lots of carbs. Could it be that water retention is a problem on preds, any advise would be welcome.
Hi everyone, firstly I want to wish you all a happy Christmas and a healthier 2017!!!!!
Ihave recently seen 2 rheumatologists who both said reduce 1mg per week, I too am very sensitive to reductions, and have done my own thing, getting down to 17mg successfully from 30mg. But they are saying because my bloods are now normal, I need to get off the prednisolone and might not have PMR, I have been mobile and pain free since the prednisolone, I have started feeling stiffer and my back more solid again, I have reduced 1mg every 3-4 weeks and this is the first time at 2 weeks 18 to 17 so goodness knows what the next few weeks have in store at 1mg a week.
He says if I get worse again he might have to re investigate, don't want to go up to 20 plus again. This is Chapel Allerton Leeds and Barnsley rheumatologists. But not seeing me for 3-4 months.
I have water retention problems from the pred. When I ask about it I am told it is the pred and they just shrug.
I think you are very sensible going for 1mg reduction every two months.
Happy Christmas Adette.
The more I read the more I think that there are an awful lot of doctors who seem to know very little about PMR.
Ahhh - light dawns!
If I was under someone at Chapel Allerton and they told me that I'd ask to be seen by Prof Sarah Mackie as a second opinion.
OF COURSE your bloods are normal - you're on b£""$* pred. It prevents inflammation and the body doesn't make the proteins that raise the markers when there is no inflammation.
For goodness sake!!!!!!!!!!!!!!!
I think I would probably aim for 1mg a month if it were me - but it is all what works best for you.
And yes - fluid retention is a problem with pred. But it is possible to lose weight when on pred - there are some amazing stories on the LupusUK forum, one lady has lost 16lbs in 7 weeks with Slimming World and another far more over several months!
Good luck
I asked for advice on this forum,you told me this persons name you mentioned above, but when I was referred it was someone else at chapel Allerton as it's choose and book you don't know who it is until it's booked.
So I have used my second opinion option and failed really.
I'm on Methtrexate AND Actemra and only reducing .5mg a week - and at 5mg daily I'm really starting to struggle - not with PMR but all the other aches and pains that were masked by the pred - planter faciitis, arthritis in my toes, a tear in my medius gluteus, hip bursitis.... you name it. I'm not sure I want to get my 'old' body back!
Indeed, the side effects of prednisolone are well known, but we also know the pain we had before the medication, not something I'm in a rush to experience again. I wonder what dose of preds would be relatively safe to take over an extended period? Anybody know?
Some people will say that zero is the only safe level - others will say anything under 7mg is ok. Who knows?
There are a couple of people on here who are on pred for life - I think because their adrenals have gone into complete failure. But I'm often wrong. (don't tell Mr Flip that!)
Don't you mean an awful lot of awful doctors?
I'm sorry you ended up with the wrong person - but you CAN choose who you see and your GP should have sorted that out for you since they know how the system works. This is from the CAB site on NHS patients rights:
"You have the right to choose a particular team headed by a named consultant for your first outpatient appointment, provided that the doctor referring you agrees that your choice is clinically appropriate. You can choose a team based at any hospital. However, you don't have the right to choose a particular consultant-led team for certain services, including accident and emergency, cancer, maternity and mental health services.
You may wish to get a second opinion after seeing a consultant, either as an out-patient or an in-patient. You will need to request this from the consultant, who may arrange for you to see someone else. If the consultant does not agree, you could ask your GP to help."
Rheumatology comes under the range you CAN choose for. And now, you CAN request to be seen by Prof Mackie's team.
What is called the physiological dose is about 7.5mg - that is the amount the body makes every day of cortisol which is essential to life (though since the bioavailability varies from 50-90%, I suppose it may be more like 12-13mg for some people and that also accounts for why some people need a higher dose to manage the pain/stiffness).
Anyway, most doctors stop worrying once you get down to this dose - the body doesn't care whether the corticosteroid available to it is natural or synthetic and when you are at a dose above this level it doesn't make any more. In much the same way your heating boiler doesn't create more heat when the thermostat knows the room is warm enough. At the physiological dose the system that makes the cortisol has to wake up and start to function again - to top up the slightly lower dose to the required amount so from there down, theoretically your body has the same total amount of corticosteroid present and you shouldn't suffer side effects as they are due to excess steroid.
But - everybody is different. I have had no side effects (that i can tell at least) this summer while on more than 10mg after a flare that needed 15mg again to manage. My consultant said get to 10mg by the end of the summer, 8mg would be better, but you need what you need. I seem to have managed the 8mg again.
Thank you Eileen,
I understand your explanation, will bear it in mind when I have my next consult with my GP ,
Your consultant seems to have a more reasonable approach to our dilemma,.