Posted , 13 users are following.
Hi I started PMR May 2013 took 20 mg to steroids to start with until Sept 2014. Was only off them till January 2015, then put on them again but this time 10mg. I am reducing to 5 then 7 alernatate days now but the pain in my neck is so bad again. Can't sleep at night as can't move my neck, think I will have to up again to 20 mg but I have put on so much weight especially in my face. Help please.
3 likes, 25 replies
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EileenH jo27931
Posted
25% of patients are said to be able to get off pred in under 2 years - they are at a far higher risk of a relapse however and that is what has happened to you. Go back to 10mg until the symptoms are totally under control (if that is enough, is it?). Even if you managed like you say last time the chances are it won't be a repeat story - the few people I know who have had PMR twice say the second lot bore no resemblance to the first.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
In the first post of this thread you will find a link to the Bristol paper a few people have mentioned. In the replies you will find the slow reduction many people on the forums have used/are using. A drop in dose of any size leaves you at risk of a flare in pain - the steps should be as small as possible and for some people even 1/2mg is too much at one go - hence the very slow reduction plan.
If 10mg worked try that first - many doctors suggest adding 5mg to the dose you are on when a flare happens.
None of us like our fat faces (or fat anything elses) but the choice is pain or pred. It IS possible to lose weight on pred - I have lost nearly 40lbs of weight due to pred over 2 years and to start with I was at 15mg. I cut carbs drastically and got things going using the 5:2 diet. It can be done - you have to be very disciplined with what you eat since you can't exercise but you see the results and it makes it worth it.
judy50581 jo27931
Posted
snapperblue jo27931
Posted
We may have to live with fatigue and some limitaitons on our activities, but I don't think anyone with PMR should be in debilitating pain (other than those who cannot take prednisone). I don't understand the rationale for not giving you the medication that will stop (or greatly slow down) the inflammation and pain.
It seems to make little sense to reduce the dose if the current dose is not providing total or at least almost total relief. Why would one not expect things to get worse?
Between the excellent advice and references Eileen and Christina have offered and the cautionary tales from others about bad outcomes from too rapid reduction, I hope you and your doctors can get you in much better shape. And soon!
My usually totally tactless brother described my newly chubby cheeks as giving me "a more youthful look," and I decided to go with that! Hang in there!
EileenH snapperblue
Posted
erika59785 EileenH
Posted