Many thanks
Posted , 8 users are following.
many thanks to all of you for replying to my query, I have started to decrease by 1mg the dsns method, which I did before got down to 3mg but got a flare and went to 5mg were I had no problems.saw the rhymi who told me to reduce again, then the pmr kicked in again back to 10mgnfor four weeks after suffering pains really bad in right temple and earaches , all the usual neck,back,arms etc pain. BUT now I am going to do what I feel is right for my body.
once again many thanks to you all, mad mags🙂
3 likes, 8 replies
Mrs_Hobbles margaret22251
Posted
Best of luck with your reduction, slow and steady. Keep a look out for the temple pain, if that comes back, don't delay in getting investigated!
EileenH margaret22251
Posted
margaret22251 EileenH
Posted
EileenH margaret22251
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margaret22251 EileenH
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rich38490 margaret22251
Posted
EileenH rich38490
Posted
Because like a lot of other doctors they are terrified of the long term effects of pred - which in PMR are actually not so bad as they think and in GCA none of the effects are as bad as the ultimate GCA effect of loss of vision.
I think they have told patients to reduce at a given rate and then never see them again so don't actually learn their mistake. Some patients are able to reduce like that. And other patients reduce as they are told and never think to question what they are told - the doctor knows best they believe. And many doctors still believe that as well so when a patient wishes to question them they are perceived as bad people and chucked out or ignored.
It is a world-wide problem but it is changing - patients are no longer so starry-eyed about someone with MB ChB or MD behind their name and they are also intelligent beings who can also do their homework on the internet. There are plenty of doctors who have listened to their patients when they arrived with references for reliable research from leaders in the field. Once they see slower tapering avoids those multiple flares they were so convinced were an inevitable part of PMR and GCA they think again. Top experts have said for years that the primary cause of flares was reducing too far or too fast - now the patients are carrying that message to their doctors.
margaret22251 EileenH
Posted
Hi Eileen, just got back from my doctors and what a todo regarding my reduction. First how dare I not do what the rhymi said I'd. Reduce by 2.5, I told her how it effected me and said I would reduce by 1mg her reaction I am going to email your rhymi and tell him, do that I said its my body.
then I had a job with the chemist who gave me coated tablets and I said they don't agree with me when I mix them with powdered ones, well you would have thought I had asked for the Crown Jewels by the look on her face how dare I question her.
so needless to say I came home quite pleased with myself that I did not give in.