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
iellen32 paula21528
Posted
tapering - the quick one brings to me flare ups I decided to avoid. I am following the reactions of my own system.
Based on what we read here on the Forums a reduction above 10% is too much.
I was told too, to do the tapering of 2 mg every two weeks.
I am doing much slower than that.
So interested on this subject in a very special way I will
follow your Discussion.
My best wishes,
iellen
dan38655 paula21528
Posted
I think that I understand the prescription for an initial rapid reduction ofthe pred dosage. I'm thinking that the doc's might be trying to establish the minimum dosage that is needed to control the particular patient's pmr symptoms, so it seems that they prescribe a rapid taper and wait for the patient to get back to them when either 1) the patient is again in excrutiating, intolerable discomfort, or 2) the patient has self-adjusted their dosage according to the obvious consequences of tapering-gone-too-far.
It seems like a primitive, ruthless approach, to wait for such abrupt return of severe symptoms and for the patient to come back in such discomfort.
So it also seems that these doctors are under some pressure to spare the prescription of a steroid dosage that is any higher than absolutely needed.
For those of us who feel no side effects of prednisone, this seems ridiculous, but perhaps, statistically, these doctors are fearful of prednisone's side effects leading to patient outcomes that reflect poorly on their health management strategies.
I should mention that I have an insurer who actually provides the personnel, facilities and services all under their own management, so this is the way things look from my perspective. And they have only tested bloods three times over the entire 3+ year period that I've had PMR, but have thankfully never left me short of prednisone tablets.
For other patients, it might be the insurance company monitoring the patient outcome statistics coming out of private medical practices or medical groups that motivates doctors to prescibe as they do.
It could as well be simply a lack of education about PMR which leads doctors to spare the prednisone and to prescribe sulfasalazine or plaquenil for PMR, but I'd only be guessing if I had to say why doctors tend to be so sparing of prednisone.
Ultimately, given the lengthy typical recovery period for PMR, the patient ends up being the one who knows how much prednisone is too little, and I guess there is only one way to find out, by reducing dosage until symptoms return.
EileenH dan38655
Posted
They are terrified of pred - they often tell patients they will crumble from osteoporosis, develop diabetes, raised eye pressures etc etc. And one at least told their patient that pred would kill - come to that, so would PMR! Which we know is NOT true thank goodness.
It has been inherited - the original use of pred was with enormous doses, patients in wheelchairs got up and walked so they used it everywhere - and later the side-effects came back to bite. Even 40 years ago when I started working we laughed and said "when in doubt, use steroids", we knew then it wasn't always a good idea! So it swang the other way - and they try to do everything they can to avoid it instead of adopting a middle path. They have learned that some of these drugs are called steroid sparers - no doubt encouraged in the past by drug companies to use them to increase sales of these drugs over others on the basis of a single poorly powered study. Without looking too closely they use them and hand the patients back to the GP or see them once a year - and many patients give up and put up with the pain. PMR goes into remission for 75% of patients anyway sooner or later - and no-one looks too closely at the real results. The patient was off pred and didn't hurt, signed off and never seen again.
That generation taught the next generation - and what they learn at a certain stage of medical education sticks and they hang onto it, won't give it up. And so it perpetuates. When patients are able talk to rheumies as equals and explain our side - a light bulb moment happens and their attitude very often changes.
jean50664 paula21528
Posted
Hi Paula,
almost seems to be the "million dollar question" doesn't it.
My GP had me go from 10mg to zero in 3 days.....!!! I didn't know any different and "boom" hit like a bus from behind.....pain, stiffness etc.
I then saw my Ruemy 6 weeks ago and he put me back on 15mg..... I nave an appointment with him again on the 27th......
I guess everyone is different, but clearly my GP was completely ignorant of tapering.....lost a bit of faith
I will be tapering at 1mg per month.....and just ascertain whether this is my best move.....
EileenH jean50664
Posted
It sounds as if your GP doesn't know that pMR is a chronic condition and requires long term management with pred. He treated it as he would other inflammation - a short taper which is fine for other things, not for chronic problems though.