Prednisone free for 3 weeks: Note: I read my daily... - PMRGCAuk

PMRGCAuk

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Prednisone free for 3 weeks

Manderson profile image
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Note: I read my daily HealthUnlocked update with interest everyday and am very thankful for the keen incite in all areas of my journey.

PMR since Spring of 2019. Rough start with prednisone / Prostate cancer / Sepsis / ... Finally established a 10 mg prednisone routine around late spring of 20. (more in personal summary)

PCP has been very supportive of my Prednisone tapering. Have had only 1 bad flare - at 2mg to 1.5 mg. Went back to 2mg and stayed several months. Carefully tapered to 1.5 over a month then waited 1 month to taper to 1mg. Stayed a 1 mg for several months. The several months were directed by life conditions, travel (slowly) and family busy-ness.

Recently tapered to .5mg over a month, waited a month and then tapered to 0 over a month. It has been 3 weeks.

Fatigue was expected and occurred, but, generally improving. However, if I overdo yardwork type stuff, the following day(s) I experience what I would guess is adrenal insufficiency. Extreme fatigue and extra sleep along with minor stomach issues.

My supportive wife and I wonder if i should take Prednisone when this occurs?

Any comments?

Thanks!

Manderson

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Manderson
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PMRpro profile image
PMRproAmbassador

I suppose possibly the odd extra dose of pred for the days you are doing yardwork might avoid the repercussions!

Since you have a supportive PCP, I would ask them what they suggest, It can take up to a year after stopping pred entirely before adrenal function is as good as it is going to get. Now you are off the pred, it may also be worth seeking a synacthen test to see if your adrenal glands have any reserve capacity though that won't show if the entire system is working properly to produce more cortisol as required, just if the potential is there.

Manderson profile image
Manderson in reply to PMRpro

Thank you for your quick response! I see my PCP in early December, so will wait for that.

PMRfacebook profile image
PMRfacebook

I had a 3 year journey on steroids and found the last 2mg tapering the hardest. I also felt quite weak, more tired than usual and had occasions when tempted to take the odd pred. On those occasions, I tended to try an over the counter anti inflammatory or paracetamol and rest - which did the trick.It took me a good 12 months post steroids before I felt (nearly) my old self again

Good luck

TheMoaningViolet profile image
TheMoaningViolet

Hi, I took the last 0.5 mg of Prednisolone on the last day of September after a long, slow taper. Like you, I need to sleep a lot, but it's good, restful sleep. I just assume this is a normal reaction to an important change; the body needs to function on its own. I also get muscular pain (I do exercise and work, both at home and in the office) and I worry when it's either shoulders or hips, but it's nothing like the memory of my PMR pain. With every small reduction, I felt more like myself, and we have always been told by the knowledgeable people on this forum that adrenals recovering fully may take a whole year, so I learned to be patient and have faith in the process. After all, it's early days for both of us. Sounds like you are doing well.

Merryfield profile image
Merryfield

The report of increased normalcy is encouraging.

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