Tapering
Posted , 11 users are following.
Hi all could I have some advice on tapering off predictions please ivan been on 15 mg for 2 weeks now the results have been good so far but now my doc wants me to go down to 12 1/2 mg next week I'm a bit concerned as reading a lot of comments in this group people are coming down too soon then in three weeks she want me go down to 10 mg I've had bloods took again results say they are improving do I have to do what the doc says and come down 21/2 mg at a time or should it be better to wait and see how my body copes thank you
1 like, 20 replies
EileenH paula21528
Posted
Personally I feel it is better to stick at the starting dose until the blood results are in the normal range and stable. And at least until the symptoms have also improved and stabilised - you may still have some pain and stiffness but there shouldn't be much. That is based on hearing stories from a lot of people over several years.
And one point I absolutely must make is that you are NOT tapering OFF pred, you are tapering to find the lowest dose that manages the symptoms as well as the starting dose does. That may be higher now than it will be later in your journey - so you (and your doctor) need to be aware and be ready to mark time if you reduce and find the new dose is not quite enough - you go back a bit to the last dose that worked and try again a bit later. Because of all that - 1mg at a time is enough. No reduction should be more than 10% of your current dose - and that is already only 1.5mg at 15mg. Nor can your doctor plan reductions in advance like that - that may be how she uses pred in other illnesses, but it often does not work in PMR and the result is a flare of symptoms. You must listen to the patient's body not stick to your game plan when it fails.
To some extent you DO have to do what your doctor says - she is the one who provides the prescription and you have to have enough pred to cover the doses you need. But several people have taken this
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
to their doctors who have agreed to them using it. It is being used in a clinical study in Leeds and it nad a similar plan has already been used by other rheumatologists in the north of England with success.
I'm sure she will feel it is too slow - but, as we always say: it isn't slow when it works. It isn't slow when rushing at the taper brings about a flare which means a return to the starting dose!
paula21528 EileenH
Posted
Thank you Eileen I'm still a little stiff but better than I was I will see how how get on with 12 1/2 if I fell worse I go back to the doc again
ptolemy paula21528
Posted
ptolemy paula21528
Posted
paula21528 ptolemy
Posted
amkoffee paula21528
Posted
My doc put me on the exact same schedule and I followed it blindly until i started hurting alot. And I knew from this site what really needed to happen so I contacted my doctor and we came to an agreement. That's where we are now. I am struggling to get down past 11 mg and I am doing it this time at .5 mg every two weeks.
Anhaga paula21528
Posted
I just read an account of how to manage PMR on medscape and there is no way you should be required to reduce from 15 mg within two weeks. I'll private message the link as I think it's a great article. I had one caveat - the age range at which to expect PMR or GCA, much too old, but the rest of it follows very closely what appears to be best practice, including tapering protocol. I will post link here as well, as I hope it will be approved for all to read.
Anhaga
Posted
http://emedicine.medscape.com/article/330815-treatment
Elijo Anhaga
Posted
Several months ago I had reduced to 3.5 but was having a flare and went back up to 10, then eventually began reducing VERY slowly, 1/2 mg. every 2.5 weeks, or I sometimes alternate the new dose with the old every other day. I am now down to 3.5 and doing OK. At the end of this month I will alternate 3.5 with 3mg. and see how that works. Unfortunately I still bruse easily and have the thin skin. I'm learning to be much more careful to avoid the ugly bruising. My doctor has let me do my own tapering, and trusts me to handle it well.
Anhaga Elijo
Posted
I tried alternating when I was trying to reduce to 2 from 2.ao5, but I think that ended up being harder on me than the straighforward dead slow version. I am now down to 2, but occasionally have 2.5. I've noticed my need for this extra boost is diminishing. Last time it had been nine days since the previous extra .5.
Rimmy Anhaga
Posted
Thanks for this link Anhaga - a very useful more up to date than usual medscape article to show my GP if he ever has 'doubts' about what I have told him I am doing - which is mostly based on the excellent info I have read from people with long term experience of PMR on this forum. I note it mentions Tocilizumab - though from what I have read so far it sounds like it has generally only been considered for secondary use and stilln not as generally preferable to corticosteroids in most people.
Thanks again !
EileenH Rimmy
Posted
Tocilizumab has yet to be approved for GCA, it is in the process though. I think it is fairly likely it will become used first line for patients with other risk factors, which will be a high proportion, and if it is seen to work well for them will be used increasingly.
However - it is not very likely to be approved for PMR for some considerable time because a) no clinical trials have yet been done, just very small pilot studies and extensive trials are required by the authorities and b) pred costs under £100 per year, tcz costs £12,000 per year.
Rimmy EileenH
Posted
Thanks Eileen that's interesting - especially the cost issue !
Elijo Anhaga
Posted
Glad it's wrking for you! Often trial and error. It's been almost 1 1/2 yrs. for me. Hope to get lower, butg my MD sai I may always have to be on 5! We'll see. Good luck to yiou.
paula21528 Elijo
Posted