PMR and the taper
Hello , new to the group 65 years old
I was Diagnosed with PMR 12/28/24 and have been tapering down from 25 mg to 20 to 15 to 12.5 to 10 …about a week on 8 mg of prednisone and the pain is back was hoping it would be better… so my question is with each 1mg drop is the pain going to go away. ? I will not take a higher mg . The side effects from steroids are awful.the pain is awful Im getting discouraged 🫤 Any suggestions or advice, thank you
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
I had the same thing happen when I dropped to 10mg
My Dr is adding Methoteraxte
To help taper faster. Fingers crossed
What is your tapering plan when you get down to a very low Predisone dose? My two-year PMR journey so far includes tapering from 25 down to 4 mg daily, where I had a relapse and went back to five, then down to 2.5 mg a few months later to the present, where I had just another relapse and am now back up to 3 daily. My plan is now to stabilize at 3 and then make the taper even more gradual, perhaps dropping by 1/2 mg just one day out of a seven-day week for a while, alternating between 2.5 and 3. Or, should a guy drop by 1/4 mg per month now? I'm 76 and in reasonable health, but would rather not be on Pred forever!
It sounds like you're in the home run on that low dose. I'm currently reducing from 4mg to 3.5mg and have had the same reduction schedule since 7mg, reducing by .5mg each time, which takes 7-8wks for each mg.
This reduction:
Week 1:
4 / 3.5 / 4 / 4 / 3.5 / 4 / 4
Week 2 (this week):
3.5 / 4 / 3.5 / 4 / 3.5 / 4 / 3.5
Week 3:
4 / 3.5 / 3.5 / 4 / 3.5 / 3.5 / 4
Week 4: stay on 3.5mg to stabilise and monitor for aches. If it's been smooth sailing right through the reduction I sometimes start the next reduction a few days early.
Tapering down prednisone for me was not a straight line sometimes I could reduce and then go back up but eventually I was able to stop taking it altogether. Now I just take methotrexate once a week and all my bad symptoms are basically gone and I feel like I no longer have RA / PMR - so lucky me. I recently tried to cut back on methotrexate from 8 to 6 / week but felt like symptoms were returning so I went back to 8 and feel cured again! Hope you get great results too!
"Tapering down prednisone for me was not a straight line sometimes I could reduce and then go back up but eventually I was able to stop taking it altogether."
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I really like your way of thinking. Tapering off Prednisone isn't a straight forward process. There isn't a single best way to taper off other than to keep trying until you succeed.
I'm at the same stage as you except that I do a monthly infusion of Actemra instead of taking methotrexate. All my bad symptoms also seem like they are basically gone. I no longer feel like I have PMR anymore except when I don't do an Actemra infusion in a timely manner. I like how I currently feel mostly because I don't have the Prednisone side effects anymore. I especially like that I don't need to worry about how much Prednisone to take everyday.
Yes my rheumatologist wanted to switch me to a monthly infusion or injectable but the methotrexate has done the trick with no side effects (bloodwork for liver has been fine) so I'm sticking with taking it once a week (8 tablets same day).
A long time ago, methotrexate worked for me. I took it for about a year and I was able to reduce my daily prednisone dose to under 5 mg. My rheumatologist kept increasing my methotrexate dose as I decreased my prednisone dose. Unfortunately, my liver enzymes increased every time my methotrexate dose increased. I didn't turn yellow but I certainly felt sick.
I'm glad I tried methotrexate. When my rheumatologist was seeking approval for Actemra he claimed other alternatives including methotrexate had failed. He also cited an "inability to taper off prednisone" as a justification for Actemra. It was confusing because I thought prednisone was the treatment for PMR.
My rheumatologist said Prednisone was the treatment for PMR but not for the rest of my life.
Hello, I’m 62 and was diagnosed in 2021. I’ve been on prednisone since and was started on 15mg and was able to get to 5mg each time I tapered, but once I went to 4…the pain would creep back. I tried to push through the pain, but after a few weeks of it, would be back on 10 mg and start all over. My tapers are very slow. I’m now on 4 mg and I’m doing well! I will stay here for 2 months, then go to three. I heard on another forum, that when they tapered, they would take their usual dose, then the lower dose….for about a week. The hope was, that the body would adjust better, if it wasn’t all at once. It worked for me! I will continue to do this with each taper now.
I work out 4 days a week, on a Peloton bike and lift light weights. Not only does it help with mobility, it is proven to make a person happier. I’ve worked out for 30 years and even at my worst, I pushed through.
I agree with the comment about tapering. You don’t need to go back to the highest dose, if your taper fails…only to the point where it went south.
Best of luck!