PMR - Decreased prednisone and pain returned
I was at 2mg for 6 weeks of prednisone and decided go down to 1 1/2 and after 2 weeks I started to have pain in my shoulders. Will 1/2 a mg make a that sort of difference. I have been on prednisone for 18 months and have gone up and down before... Any recommendation on what to increase the predisone to.
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Thanks for your kind comments. A slow taper is best. It took three months of gradual reduction for me to be able to discontinue prednisone, but others need even longer times. My rheumatologist advised that the 5 mg. level is the point where many people experience a relapse of pain. However, I was able to keep tapering after reaching 5 mgs. Each time the dose was reduced I experienced a brief period of increased pain but was always able to overcome it in a couple of days. After I got to one mg. I was able to discontinue the drug completely. I hope your journey goes smoothly and you are able to achieve remission. All my best to you.
Welcome @sloped483, It sounds like you may also have Giant Cell Arteritis (GCA) along with PMR. There is another discussion you may want to join and learn what other members like @tsc, @norieaugustine, @artist01, @tillysam and others have shared:
PMR connection to GCA: https://connect.mayoclinic.org/discussion/pmr-connection-to-gca/
Have you been diagnosed with GCA?
Thanks for the welcome. I was just recently diagnosed with PMR and put on a low dose of methylprednisolone and am just currently learning all that it entails as well as learning how GSA is connected to PMR and the seriousness of it.
Hi @sloped483, I have Giant Cell Arteritis. I experienced a very stiff neck with pain running down both sides of my head, tender scalp, a dry cough, short stabbing pains from my ear to my nose and trouble seeing out of my right eye a couple of times in addition to anorexia, loss of appetite and anemia (manifest as extreme fatigue). I didn't have any jaw pain though.
My mother in law also had Giant Cell and her jaw hurt so badly she could not finish chewing her food. My Rheumatologist also described the jaw pain of GCA to me as difficulty chewing.
I hope that helps you. Best, Teri
May I recommend a really good site regarding PMR? You will find several different plans for tapering gradually. Look under 'Pinned Posts" and FAQ's. Then go to "Tapering Plans".
https://healthunlocked.com/pmrgcauk/posts
You will probably have to set up a bit of an account, but the information is well worth it.
Thanks for the information. I'll check it out.
this truly a great PMR site
Thank you. I appreciate evidenced based sites as well as this supportive community group.
My tapering doses continue to be adjusted when my trigger points become rotating knifepoint lightning burns.
This is a amazing site. Thank you for the reference. Much appreciated!
You shouldn't have to be suffering those "knifepoint lightning burns". You should be proactive in tapering - not reactive. But there are smart ways to do that, and the plans in that site give you lots of options to figure out what works for you - without pain. Pain is inflammation, and that's what the pred is meant to get rid of. But you should be in control of your body. Not the prednisone and not the PMR. Good luck.