Post prednisone

"I used the measurement of ‘is this as bad as what I felt at the beginning of having PMR?’ Usually the answer was no, but there were times I wanted to schedule an appt to see if I needed to go back on prednisone, then the pain would lessen some."

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I used to do this too except I used it for deciding what dose of prednisone I should take.

There was also a "survivability" aspect to whatever was the latest onset of pain. It was somewhat reassuring to me when I could say "it has hurt worse before and I survived."

My whole experience with a variety of autoimmune difficulties has built up my tolerance level for pain. Little stuff isn't so concerning anymore. I don't expect to be pain free ever again. Presently, it is probably "as good as it gets" and I'm off prednisone.

@fam8284. You are welcome! When I joined this forum I didn’t read any accounts of people who had transitioned off prednisone. Everyone was in the same boat I was. I’ve made a point of circling back and trying to give encouragement to those who are tapering—that was the biggest hurdle for me. Remain positive.

That is very thoughtful and kind of you to circle back and help others even though you could have just moved on. I truly appreciate you giving your time to do that. It may seem like a small thing but it makes a big difference to those who are seeking help and support.

@fam8284. I can relate to the pain you’re experiencing. I’m 79 and took prednisone for 9 months before tapering. There will definitely be pain post prednisone. And sometimes it feels like it’s getting worse. I used the measurement of ‘is this as bad as what I felt at the beginning of having PMR?’ Usually the answer was no, but there were times I wanted to schedule an appt to see if I needed to go back on prednisone, then the pain would lessen some. I alternated taking ibuprofen and acetaminophen every few days, and gradually I was taking them less often. I hope you’re not flaring but if your inflammation markers are high, it is what it is. You likely won’t be back on for long and your second taper will likely be more successful. Be patient, there is an end in sight. Be in good health.

Hi, I was told by someone in the support group that I shouldn't take Advil when taking Prednisone. I read that you mentioned taking ibuprofen. I didn't get an explanation as to what happens if you take Advil. Anyone who reads this comment, can you please tell us why we should not take ibuprofen, Advil, etc for pain relief. Thanks!

Hi, I was told by someone in the support group that I shouldn't take Advil when taking Prednisone. I read that you mentioned taking ibuprofen. I didn't get an explanation as to what happens if you take Advil. Anyone who reads this comment, can you please tell us why we should not take ibuprofen, Advil, etc for pain relief. Thanks!

It increases the risk of stomach side effects like bleeding and stomach ulcers because both prednisone and NSAIDs have the side effect of thinning the lining of the stomach. As far as I know, it’s not recommended to take the two together regularly unless both are prescribed by a doctor.

I think many people in the group are already having to avoid NSAIDs because of the risk of bleeding or effect on the kidneys too.

Both my doctors suggested that acetaminophen was safer for me than ibuprofen or other NSAIDs. Additionally my GP told me that the minimum effective dose for ibuprofen was 600 mg. So my strategy was to take two 8 hour acetaminophen (650mg each) twice a day and only take the ibuprofen midday if I had breakthrough pain.

The good news is that recently I’ve been getting by most days with only one dose of acetaminophen in the morning. I take that as a sign I’m slowly returning to normal.