Prednisone is like running UP a DOWN staircase

Posted by ag49 @ag49, Jun 30 12:32pm

Hi all. The unpredictability of prednisone is what causes me the most problems. I know the Myriad of side effects, both physical and mental, are different for each one of us. It seems that the physical is expected with breakthroughs in the dose, especially when tapering. What I cannot reconcile is the profound effect it has had on my overall health. There are days I am able to continue in activities that keep me healthy, both physically and mentally. But other days it's near impossible - either the brain fog wrestles with my physical energy, or the zeal and motivation are gone. I'm at 8.5 mg, a slow taper since April. Before PMR/ prednisone I was a young 75 years - very active physically and mentally. Now I'm feeling older than 75. 😥

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DadCue | @dadcue | Jul 6 5:13pm

In reply to @eby "Did anyone have success with prednisone? All I see are depressing stories. any success with Biological..." + (show)

It depends what you mean by success. From what I understand, we are to take prednisone and "wait until PMR burns itself out." Supposedly PMR does burn itself out for most people in 1-2 years or a "reasonable" amount of time. Prednisone can then be stopped. I would consider that a success.

There is a sizable group of people that included me where it takes much longer for PMR to burn itself out. There is no way for me to say it was a complete success to take prednisone daily for 12 years. It was an arduous journey to say the least. However, I survived so maybe it was somewhat successful. In any case, prednisone was called the best option at the time.

The question then becomes when is it reasonable to stop prednisone and try something else. Unfortunately, you can't stop prednisone easily after you start the journey of long term prednisone use. I'm not saying people shouldn't try that path because there isn't a way to know if you will be part of the successful group or not.

I tried a biologic after 12 years of prednisone. I was off prednisone a year later except I needed to go back on 60 mg of prednisone again for a few months. The first biologic was easy to stop. I considered it a partial success. After a second biologic didn't work, it too was stopped. I was allowed to restart the first biologic with some dose changes. I tapered off prednisone in 3 months the second time. I have been off Prednisone for 3 years and I'm pleased with the overall outcome of the biologics I have tried.

I consider the biologic I currently take a success at least until it fails. I'm more optimistic than I ever was on prednisone.

lsmomasdaughter | @lsmomasdaughter | Jul 6 8:23pm

It may not be the prednisone that's the cause of your up and down days, it could be the course of the PMR itself. I'm 78 and was pretty active myself until last fall: got a bad cold that became pneumonia, then problems with my feet, then a horrible GI thing, then the pain and weakness starting in my lower legs, knees, and thighs. I hate prednisone. It tastes bitter, it wrecks my stomach, makes me moody, and I gain weight. But at least I can get up out of a chair without help and walk without a cane or walker. When I try to taper lower than 10 mg. (prednisolone not prednisone because it's easier on the stomach), the pain and weakness come back. My rheumatologist said 6-12 months before it resolves, though it could go on a lot longer.

megz | @megz | Jul 6 9:19pm

In reply to @lsmomasdaughter "It may not be the prednisone that's the cause of your up and down days, it..." + (show)

It wasn't till I read comments here from a few people who aren't taking prednisone/prednisolone but have PMR, that I realised what you're saying is right. They describe similar new ailments and pain from certain activities, same as prednisone users, but with more pain.

Some of the prednisone users' breakthrough pain, poor body condition and new ailments will probably also be because of the chronic inflammation of PMR itself, as well as some being caused or made worse by prednisone/prednisolone.