Reduction of 1 mg preds a week?
Posted , 7 users are following.
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.
0 likes, 21 replies
jean39702 jancorb
Posted
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.
EileenH jancorb
Posted
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.
linda17563 EileenH
Posted
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....
EileenH linda17563
Posted
ptolemy jancorb
Posted
adette01750 ptolemy
Posted
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.
ptolemy adette01750
Posted
The more I read the more I think that there are an awful lot of doctors who seem to know very little about PMR.
EileenH adette01750
Posted
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!!!!!!!!!!!!!!!
adette01750 EileenH
Posted
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.
judy20492 ptolemy
Posted
Don't you mean an awful lot of awful doctors?
EileenH adette01750
Posted
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.
adette01750 EileenH
Posted
Thank you Eileen for you'd information it is very helpful.
Take care
EileenH adette01750
Posted
However - it is possible you might still get the same approach from her, although I guarantee you she will explain her thoughts rather better! There is a creeping movement for us to be seen by a rheumatologist at least once - because there are a lot of confusing diagnoses appearing very late in the day that require them to get patients to reduce quickly to be able to see better what is going on. It is a very mixed problem because my experience is that patients who have to reduce and then go back on pred often find it more difficult to get symptoms under control subsequently - by no means all though. BUT - GPs are jumping to conclusions and missing other possible causes. PMR is just the symptoms of an underlying disorder - and there are quite a lot. In some of them, the use of pred just makes things worse and a patient who struggles at higher doses very often DOES have something else that would respond far better to another treatment. Sometimes the consultant is the piggy in the middle - having to sort out a problem.
However - I'm delighted to report that the group using the dead slow approach in a study are having excellent feedback from patients, above all women saying that it is working better for them than any other sort of reduction they have been given.
jancorb
Posted
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.
ptolemy jancorb
Posted
I think you are very sensible going for 1mg reduction every two months.
EileenH jancorb
Posted
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