The pros and cons of Prednisone

Posted by jlo2252 @jlo2252, Jun 10 3:26am

Hello. My name is Jean and I’m new to this group. I feel like I have a unique perspective regarding the “evil” steroid drug prednisone…. I have been reading your comments for a few months now but just recently commented on this forum.
I had very severe asthma as a child and would of died without steroid injections and oral prednisone. So would of both of my children, who genetically got their asthma from me.
In my early 20’s I was diagnosed with Reiter’s Syndrome, today known as Reactive Arthritis. The only medicines they had in those days were a anti inflammatory called Indocin, Aspirin and Predisone—that was it! The pain was unbearable and I was hospitalized and diagnosed and treated by my PCP and a Rheumatologist. I had the arthritis symptoms for a year, then by a miracle, went into remission for 20 years! After that time it comes and goes infrequently. I have had PMR off and on for about 2 years. This has been my lifesaving journey taking prednisone for pain and being able to breathe!!
Ok, now all this has, of course, had its toll on my body. I’m 74 years old and I have Osteoporosis. I’m taking a yearly infusion of Reclast for this (can’t take the oral medication) and taking calcium/magnesium supplements.
I have the thin, crepy skin on my forearms and hands. No real cure for that—just use a good moisturizer.
I’m also a diabetic, but this is more to do with the genetics in my family —my mom, grandma, brother and sister all had/have it and they never took prednisone.
My rheumatologist wants me off predisone (I’m taking 7.5 mg.) and he concurrently wants me to be on Actemra. I getting over a mild bronchitis and then I can start that. My immune system is also not the greatest.
Anyway, despite all of my health issues, I’m grateful and in awe of the magic of predisone for my breathing and pain relief!
Thanks for listening!

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@dadcue

I think your conclusion is valid. However, doctors generally believe a person who takes these other anti-inflammatory DMARDs and biologic medications, may need less of another type of treatment --- corticosteroids.

Unfortunately, it is hard to weigh the pros and cons of alternatives until you try the alternatives.

Thanks for posting your question about the pros and cons of Prednisone.

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Thanks for your kind response and I agree with you. I guess the subject matter really struck a nerve with a lot of people and I do understand it is a controversial subject!
It is hard not to have an opinion on this when I’ve had multiple medical issues where I needed prednisone. I have tried methotrexate and Arava and now my doctor would like me to try Actemra so I can get off the prednisone. Although it has helped my pain, the main adverse effect I have right now is fatigue… I’m always taking naps which is out of the norm for me and I will discuss this on my next doctor visit.. I suspect my poor adrenals are exhausted but we shall see.
Thanks again for your insight.

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@jlo2252

So after reading all your posts,
my own conclusion is that prednisone is both a blessing and a curse! It does have some not so good long term side effects, which in my mind don’t look as bad as the potential side effects as some of the other biologics and anti-inflammatories mentioned!

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Well not to be a sore loser but I think my side will percentage wise lose out in a choice. Prednisone can make you feel so much better with an addictive effect. Its the only one of your choices that has that effect. The biologics , DMARD, TNF you can stop when you want. If it doesnt work just stop. Prednisone will not let you do that and makes you happy you made that choice and in some cases shuts down your body so that is the only choice.

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@jlo2252

Thanks for your kind response and I agree with you. I guess the subject matter really struck a nerve with a lot of people and I do understand it is a controversial subject!
It is hard not to have an opinion on this when I’ve had multiple medical issues where I needed prednisone. I have tried methotrexate and Arava and now my doctor would like me to try Actemra so I can get off the prednisone. Although it has helped my pain, the main adverse effect I have right now is fatigue… I’m always taking naps which is out of the norm for me and I will discuss this on my next doctor visit.. I suspect my poor adrenals are exhausted but we shall see.
Thanks again for your insight.

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Controversial subjects don't have to be toxic. A "healthy debate" is a good thing. I still get a laugh when I think about a "self proclaimed PMR expert" and long term Prednisone user like me. I never identified myself as an expert and I still don't.

That person disagreed with everything even disputing my personal experience with Actemra. We actually had more in common when compared with our differences. I weathered that person's disagreement with me. The one time I "respectfully disagreed" --- the person translated that to mean I was being disrespectful. Go figure!

Whether or not you try Actemra is a personal choice. If you do ... I hope it works for you.

My adrenals were struggling but Actemra allowed me to stay on a 3 mg dose for a long time. My 7 mg dose was a huge hurdle to overcome. I suspect that was related to my adrenals because my fatigue was off the charts. My flares often occurred at 7 mg of prednisone. My cortisol level was low but that wasn't discovered until I was on 3 mg prednisone.

Apparently, cortisol levels aren't accurate until you reach a 3 mg dose of prednisone and then only if you can hold your prednisone dose for a couple of days. Even that is debatable but that's what my endocrinologist told me.

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@tuckerp

Well not to be a sore loser but I think my side will percentage wise lose out in a choice. Prednisone can make you feel so much better with an addictive effect. Its the only one of your choices that has that effect. The biologics , DMARD, TNF you can stop when you want. If it doesnt work just stop. Prednisone will not let you do that and makes you happy you made that choice and in some cases shuts down your body so that is the only choice.

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It isn't about winning and losing. Shared experiences are the main thing. We are all in this together. Everyone agrees we are all different.

I can't think of any Prednisone alternative that I couldn't stop. I remember the side effects but the medication was easy to stop. Some of the neuropathic pain medications had to be weaned off but not as slowly as Prednisone.

Prednisone "addiction" isn't common but there are some case reports about that. "Steroid dependence" is the terminology that is used but I'm not sure what the difference is. That subject is also controversial.

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@dadcue

Controversial subjects don't have to be toxic. A "healthy debate" is a good thing. I still get a laugh when I think about a "self proclaimed PMR expert" and long term Prednisone user like me. I never identified myself as an expert and I still don't.

That person disagreed with everything even disputing my personal experience with Actemra. We actually had more in common when compared with our differences. I weathered that person's disagreement with me. The one time I "respectfully disagreed" --- the person translated that to mean I was being disrespectful. Go figure!

Whether or not you try Actemra is a personal choice. If you do ... I hope it works for you.

My adrenals were struggling but Actemra allowed me to stay on a 3 mg dose for a long time. My 7 mg dose was a huge hurdle to overcome. I suspect that was related to my adrenals because my fatigue was off the charts. My flares often occurred at 7 mg of prednisone. My cortisol level was low but that wasn't discovered until I was on 3 mg prednisone.

Apparently, cortisol levels aren't accurate until you reach a 3 mg dose of prednisone and then only if you can hold your prednisone dose for a couple of days. Even that is debatable but that's what my endocrinologist told me.

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yes good point. Hopefully no one thinks I am being toxic. I respectfully offer an opinion based on my experience and all the research I did understanding how the pill the size of a baby aspirin could do what it does. Your opinions and everyone elses I very much appreciate. I do not know anyone that has walked the plank as you have. At the end of day I know that everyone can have so much more going on than a simple taper. We all have to make our choice and I am not saying mine is any better. So I retract the loser comment. There are no winners and losers. We all sort of lost a little something by being in this group. But I have also benefited tremendously.

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@tuckerp

yes good point. Hopefully no one thinks I am being toxic. I respectfully offer an opinion based on my experience and all the research I did understanding how the pill the size of a baby aspirin could do what it does. Your opinions and everyone elses I very much appreciate. I do not know anyone that has walked the plank as you have. At the end of day I know that everyone can have so much more going on than a simple taper. We all have to make our choice and I am not saying mine is any better. So I retract the loser comment. There are no winners and losers. We all sort of lost a little something by being in this group. But I have also benefited tremendously.

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The following link addresses the "misuse of prednisone." I think it is well written.

"Unlike substances commonly associated with abuse or addiction, prednisone misuse arises from misinformed attempts to self-medicate or misunderstandings of its effects."
https://wellnessretreatrecovery.com/prednisone-understanding-its-role-and-risks-of-misuse/
I was guilty of "self-medicating" until I concluded that I had no idea what I was doing. In nursing we called this problem a "knowledge deficit."

Some of the terminology the medical profession uses never ceases to amaze me. "Mental status changes" for steroid psychosis was one of my favorite expressions for something that didn't play well with patients. Calling someone psychotic always had bad connotations. Nevertheless, the phenomena is well documented.

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My husband has the same problem with you and he took prednisone small doses for 2 years before the new injection was given by his doctor. Now he is on new injection medication for every two months. All his symptoms have been gone.
I am also on prednisone 5 mg one a day for OA, and working well .Take care

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@tuckerp

I have been on this site for a little over 2 weeks. I have tried to be somewhat vocal on my opinion about prednisone and life hereafter. I just turned 72. I grew up with Asthma. I passed it on to one of my 3 daughters. I always treated it with OTC. I unfortunately came to be associated with steroids when my wife acquired GBM 3 years ago. I am her caretaker. The drug has ravaged her body yet everyone says well just keep her comfortable. She is on hospice. She is on 5 mg of prednisone equivalent. We both have always been active. She is 71. I acquired PMR 2 years ago. Knowing the issues with steroids it was my only savior. But I quickly (6 months) got off. I cannot get my wife off. Inflammation in the brain is not negotiable. At 72 I have plenty left. No other issues in my life. I dont want to be a burden so I need to approach life as responsibly as possible. I am not ready to say there is nothing I can do about it. I want to understand my disease and take steps to continue forward. I dont see living to 100. But I am not ready to accept that its over. There is a normal life after prednisone. It is possible to be pain free and PMR doesnt have to be a shortened life expectancy. Its not like GBM. Cheers to the next 20+ years.

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So sorry about your wife…
You are blessed with many good years with her and must have a lot of good memories. I’m glad you are able to care for her. I feel the same as you about the PMR thing. Hoping to be off prednisone soon enough and maybe do more traveling in our Rv before we can no longer do so. We have been together for 51 years.
Strength and comfort to you as you go through this health journey with your wife….take care.

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@jlo2252

So sorry about your wife…
You are blessed with many good years with her and must have a lot of good memories. I’m glad you are able to care for her. I feel the same as you about the PMR thing. Hoping to be off prednisone soon enough and maybe do more traveling in our Rv before we can no longer do so. We have been together for 51 years.
Strength and comfort to you as you go through this health journey with your wife….take care.

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thank you. We were married in Dec 1973. 3 beautiful daughter. 8 grandkids. We had just bought an RV and were planning to see the country. I think there is so much to see without going overseas. All I can say is enjoy. There are no givens in life. Even healthy, as you know, isnt a picnic. I was lucky to be her caretaker. Her journey will end soon. I wish you the best.

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@dadcue

The following link addresses the "misuse of prednisone." I think it is well written.

"Unlike substances commonly associated with abuse or addiction, prednisone misuse arises from misinformed attempts to self-medicate or misunderstandings of its effects."
https://wellnessretreatrecovery.com/prednisone-understanding-its-role-and-risks-of-misuse/
I was guilty of "self-medicating" until I concluded that I had no idea what I was doing. In nursing we called this problem a "knowledge deficit."

Some of the terminology the medical profession uses never ceases to amaze me. "Mental status changes" for steroid psychosis was one of my favorite expressions for something that didn't play well with patients. Calling someone psychotic always had bad connotations. Nevertheless, the phenomena is well documented.

Jump to this post

Dadcue, I thought you sounded like you are in the medical field! Are you? I worked in the medical field for 45 years! I’ve been retired for 6 years.
I worked first as a medical assistant in a doctors office for 5 years. Then got a job as a Phlebotomist / Laboratory assistant in a hospital laboratory for 12 years. We moved out of area so I got a job in a different hospital as a Certified Phlebotomy Technician( title change as I became licensed by the state of California) for another 8 years. It is amazing what you pick up and learn while working with patients and doctors in a hospital setting— I loved it! The next 20 years I finally got my dream job working for Kaiser Permanente in a clinic setting, as a Certified Phlebotomy Technician/Lab Assistant.

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