Prednisone Taper Stories

@oldflaguy69
I am 79 and just developed PMR last March. I absolutely detest prednisone, sure it helps with pain, but the side effects, in my case are destroying my life. I am at 7 mg a day now and receiving twice monthly injections of a biosimilar. So far I am worse off with discomfort and trying to reduce the Prednisone a mg every two weeks. No one seems to talk much about the attitude one develops with this disease but I, for one, feel that it is destroying my otherwise great life. Hang in there and check with local hospitals, as some have programs to make injections affordable.

It took me two years to taper from 30 mg. I have been completely off for four days now. Until I got to 10, I had permission to reduce by 2.5 mg at a time, but had frequent setbacks either due to increased pain or an elevated sed rate. I had labs every two weeks during that time. Below 10, I reduced by 1 mg per month and sometimes by 1/2 mg. It has been extremely slow, but went much faster after I was put on methotrexate, which I realize does not help many people. I wish you good luck in finding what works for you, but above all be patient.

@caroljeand It sounds like your adrenal glands have a ways to go yet before they are fully functional. Two weeks after I stopped pred I had a couple of weeks of withdrawal, where I had some mood swings and fatigue. About a month after I stopped I felt my metabolism recover. It took about 4 months for me to feel fully recovered from the prednisone.

@danboldman PMR is a horrible condition. People with this issue may look great, but feel like s*&%!! I actually had a "bit of a meltdown" with one PC doctor who said, "If you don't start exercising, you aren't going to make it much longer!" Ignorant comment, as I had been begging for her help to see a Rheumatologist for many months. Yep! I also feel like PMR is trying to destroy an otherwise beautiful life. Some days, with the pain, a positive attitude only goes so far. I thank God for my wonderful, understanding and supportive husband.

@caroljeand Hello! First of all, I agree that getting off Prednisone (I call it the Devil Drug - because of all the potential damage it can do to your body.) If you see my note, please tell me about Kevzara. And, by the way, 78 isn't old!! I bet you are still beautiful : > )

@jeff97 i Jeff! Thank God GCA is one thing I don't suffer from! I am sorry you had to deal with that. I am down to 6 mg/day, but still hurt like crazy. So, you mention withdrawal symptoms. Can you elaborate? Thank you.

@jeff97 thank you… I’m assuming the same. Helpful to know how long to expect to feel somewhat normal.
I guess I was hoping it would be quicker as I was on prednisone just under 6 months. I have to patient with myself and not expect to come out of this circus without some pains and fatigue.

@slynne12
Ask,your Dr abt the Biologic Kevzara……it helped me tame the inflammation and get off prednisone.
Also, have you tried Tylenol for Arthritis as a supplement to thr low dose prednisone ? Worked for me. 🤞
I am a 79yo female.

@prestol
"My question is: wouldn’t my adrenals have slowly recovered once I got below 5 mg? I did a long slow taper."
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Dose and duration and perhaps "cumulative dose over time" are the variables that need to be considered. When you ask artificial intelligence it has little to do with how slowly you taper.

Artificial intelligence says:
"Here is why your adrenals might not have recovered fully despite a slow taper, and what you need to know:

5 mg is the "Critical Zone": Once you get below 5 mg, you are in the range where your adrenal glands are required to produce their own cortisol. If they are still "sleeping" (suppressed by the previous high doses), you will experience withdrawal symptoms, not because the taper was too fast, but because your body is not yet producing enough of its own cortisol.

Long-Term Suppression Takes Time: If you were on steroids for a long time (months or years), your adrenal glands can shrink (atrophy). It can take 6–12 months, and sometimes up to 18–24 months, for your HPA axis (hypothalamic-pituitary-adrenal axis) to fully recover."
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It just depends what you want to believe about how you feel. Symptoms are important but you need to know precisely what is causing the symptoms. You can't believe all pain is PMR and automatically increase your prednisone dose. People are too inclined to do that.

I know people promote the idea that tapering too quickly is the only problem we encounter. I can assure you that tapering too quickly was only part of a much bigger problem. The biggest part of the problem I had was long duration (12 years for PMR alone but "decades" for some other conditions) higher doses (over 20 mg most of the time) and a massive cumulative dose. Some of the conditions I had required 100 mg occasionally. PMR only needed 20 mg but most people have other conditions to contend with that also respond to Prednisone. It is false to think all pain that responds to Prednisone is "most likely" PMR pain.

My endocrinologist was surprised that I had a measurable cortisol level albeit low when I had a morning level checked. I was told to stay on 3 mg of prednisone until my cortisol level improved. I asked how long and the answer was "as long as it takes" but we will re-check another cortisol level again in 6 months. I was told not to taper at all for 6 months. Staying on 3 mg would have been impossible except that Actemra was controlling PMR while I stayed on 3 mg.

My cortisol level was only "adequate" for normal low stress days. Whether or not my adrenals could respond adequately to something stressful was was not certain.

My endocrinologist told me to call her if "anything happened" that was stressful. She added that I didn't need to call her first if I felt that I had to take Prednisone again but she still wanted me to inform her if I needed again "for any reason at all."

I had access to an emergency supply of prednisone.

I have inflammatory arthritis and PMR. Having both is possible and the symptoms overlap. I have a hard time knowing which condition is causing which pain. They can both flare up at the same time or independent of each other. When the inflammation is "systemic" anything can flare up.

@caroljeand It's interesting that you mentioned the fatigue. I've been feeling a little tired for the last couple of months, and I stopped prednisone 6 months ago. I'm still taking Actemra, and you posted that you are still taking Kevzara. Both of those drugs work similarly, by blocking IL-6. I've read that fatigue is a common side effect for both Kevzara and Actemra. It's possible we are feeling that effect from those drugs.