Polymyalgia assistance to reduce steroids
Posted , 6 users are following.
i was diagnosed in may 2019 after the worst 12 weeks of my life when i could barely move. i was a fit, slim and healthy 59 year old prior to this. My steroids started and hey presto im good again, hooray.
ive been reducing the steroids slowly as directed by my gp (not that ive had any follow up since initial diagnosis). ive got to 5mg and i cant seem to get any further. each time i reduce to 4mg my pain starts again. my original pain started in my hips and thats always where i get notice im relapsing first. Im not sure i understand this illness at all. am i still ill and its masked by the steroids? or am i trying to wean myself off steroids and hope my body can produce its own at some time.
0 likes, 4 replies
nick67069 julie19599
Posted
Hi Julie,
Steroids do not cure PMR, they only help to reduce/manage inflammation. You are not trying to reduce steroids to zero, but you are trying to find the lowest dose that controls/ manages your symptoms. PMR steroids treatment last on the average 5.9 years, and only about 20% of patients get off pred in 2 years. Being on 5mg after one year is normal. Stay on the dose that controls your pain, otherwise it makes no sense to take steroids at all.
About reduction.. search for DSNS (Dead SLow Nearly Stop) method of reduction on this site. It is a gradual method of reduction. Another rule is not to reduce more then 10% of the dose, so for you at 5mg it is advisable to reduce in 0.5mg steps. Most of us get pill cutter and split 1mg pill ( assuming it is not special coated version with delayed release).
And finally about fitness. Moderate activity helps with PMR ( promotes blood flow). Intensive training is to be avoided. Hope that helps.
Anhaga julie19599
Posted
You've only been on pred for maybe 14 months, and to get to five mg is very good. Some doctors like their patients to stay at that level for a few months anyway, so you will be in good company. When you are ready to try a taper again do follow Nick's advice and try half a mg reduction using the very slow method.
I have just got to zero. I was at 2.5-2 for a couple of years before I was ready to taper lower and it took me a year to get from 2 to zero! Was on pred for almost exactly five years.
peggy_56092 julie19599
Posted
I am beginning my fifth year and am on my third attempt reducing from 4 to 3 1/2 mgs using one of the very slow reducing plans listed on the PATIENT site. If you still have pain when going back to your previous 5 mgs, go up 5 mgs, and if pain free, go back down 1 mg a day to 1 mg above where you were before to make sure all the inflammation has been cleared out by the prednisone dosage.
EileenH julie19599
Posted
It isn't really "masked" - the steroids are managing the inflammation being created by an underlying autoimmune disorder that causes your immune system to be unable to recognise your body as self and so it attacks it as if it were "foreign" causing inflammation - swelling and pain. If it were rheumatoid arthritis you had you would be put on what are called DMARDs - drugs that calm the immune process down. In PMR pred is our "DMARD", nothing else works as well. It is all to allow a decent quality of life until it burns out and goes into remission - which it does within 6 years (often sooner) for half of patients. Which is more than happens with most autoimmune disorders.
You are never reducing relentlessly to zero, you start at a dose that is plenty and then taper the dose slowly to find the lowest effective dose giving the same relief as the starting dose did. Yours appears to be 5mg - a low and safe dose. It doesn't mean you won't get lower, just not yet. The more you try to force to get lower though the harder it will be to get things under control again. Give it a few months at 5mg and then carefully try a 1/2mg step down using something like this to spread it over a few weeks:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
The lower you get, the slower it needs to be to get it too work - but in the end, nothing will get you past that lowest effective dose until your body is ready.