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What justifies an increase in prednisone?
I have been tapering for 5 months. I just started 5mg this week. Each time I have tapered after getting below 10mg I always seemed to have an adjustment period. Many times it was a week to 10 days and then I seemed to get back to my baseline. That did not mean I was totally pain free. I usually found it to be a 1 and at worse a 2 normally. It was usually only in the morning. All during this time my inflammation numbers did not go above the normal range. They stayed consistent.
Now today at my rheumatologist visit she wants me to go back up to 10mg. Her reasoning is that the prednisone should take all the discomfort away. It's not to make it manageable. I was kind of thrown for a loop. To me the increase is a step backwards in my goal of tapering off the med. Am I off base to wonder this? I've read that many of you still experience some discomfort with your dose. Is it really to completely eliminate pain only?
I stay active. I am on an anti inflammatory diet. I am staying away from gluten and limit my dairy. I am not consuming all kinds of sugar. And I don't smoke or drink. I believe all this is helping my taper. In addition, I see/talk to a Functional dietary nutritionist weekly who is helping with my PMR. I was seeing her even before I got diagnosed.
I am just not real comfortable with the jump now from 5 to 10mg because I thought I was progressing. I would really like to talk to my dr. more since I have more questions since our visit but not sure how likely I'll be successful.
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Thank you.
Gives me some perspective.
"Being that you dealt with PMR for a longer period, is it debilitating over time or a nuisance(?) to deal with?"
That is an interesting question. PMR was very debilitating at first. I was very happy when prednisone relieved most of the pain and stiffness. This stage lasted for a couple of years. There was no question in my mind that I needed to take prednisone because I couldn't bear the consequences if I didn't. I woke up every morning with pain but I still needed to go to work so I took prednisone at 3 a.m. just to be able to go to work at 7 a.m. Otherwise I needed to let my employer know by 4 a.m if I needed to take a sick day. At 3 a.m. it would seem impossible to go to work but if I took prednisone at 3 a.m, I would reliably feel much better and able to go to work at 7 a.m.
This routine lasted for 2-3 years but it gradually changed. I would sometimes sleep the entire night without the 3 a.m. pain. It wasn't a "good night of sleep" because I would still have some"discomfort" but taking my prednisone dose could wait until I wanted to get up at 6 a.m and get ready to work. I was still taking a lot of prednisone so I wasn't making any progress with decreasing my dose.
I would try to taper my dose lower but my rheumatologist didn't give me any set schedule. I didn't try to decrease my dose very often which is why I say it all depended on how I felt. My inflammation markers were elevated even when I took prednisone. I remember my rheumatologist telling me to increase my prednisone dose when I was already taking 30 mg. She was amazed that my inflammation markers were still elevated on 30 mg even though I didn't feel more pain.
Maybe that is why your rheumatologist wants you to increase your dose if your inflammation markers are still high. My inflammation marker were very high initially when I was diagnosed with PMR. After many years on Prednisone, my inflammation markers were stubbornly slightly elevated and rarely within the normal range.
My tapering progress was incredibly slow. Going from 30 mg to 20 mg took me 5 years. Going from 20 mg to 10 mg took me another 5 years. I had many setbacks along the way. I don't know if every setback was a PMR flare because my pain was never exactly the same as my original PMR symptoms. My original symptoms were distinctly shoulder pain along with generalized pain and stiffness. The stiffness lasted all day long but the shoulder pain mostly stopped when I took prednisone. I wasn't convinced I still had PMR after 10 years. I had "generalized pain and stiffness" which was mostly relieved when I took Prednisone but the shoulder pain was gone.
I still felt like I needed to take prednisone but maybe not for PMR. I told this to someone who had an adrenal crisis from long term prednisone use. I told her about feeling more normal when I took prednisone. The debilitating pain would return whenever my Prednisone dose was decreased. She raised some serious concerns about me have adrenal insufficiency. She wasn't wrong about that as I found out later when Actemra allowed me to get to 3 mg of prednisone.
What is sometimes hard to comprehend is that a person can still have PMR and adrenal insufficiency caused by long term prednisone use. I tend to believe they go together as the following link suggests.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
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1 ReactionI have successfully tapered to 3.5 without incident, but not without pain…exactly as was promised by my rheumy. My hand pain and finger pain and weakness have largely disappeared. I do have almost daily pain (level 1 or 2) in ONE shoulder, which is largely gone by the afternoon. That shoulder had a prior rotator cuff tear. My markers are normal.
There is no way I would jump up to a higher dose. Best to you.
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2 ReactionsMy doctor suggested methotextrate when I was at 20 mgs of prednisone in my 3rd month total. I was scared to take this metho drug and now I’m in my 9 month now at 19 mgs and can’t go lower. I have in and in my 5th week with the methotextrate. No help yet but I think my body is addicted to the steroids and gonna be difficult to wean off now than my 3rd moth. He might have been right. Good luck in your decision
Does the PMR come back with a vengeance when you try to taper lower? Have you tried to see what happens if you drop by a small increment, like to 18mg.?
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