Side effects of prednisone

My Mayo rheumatologist discussed the side effects with me when we discussed a tapering strategy to hopefully minimize the amount of time I would have to be on prednisone to control the PMR. My pharmacist also went over the side effects with me as they normally do with any new medication I take. I'm no expert but I'm not sure it's a gaping hole in the medical system. It definitely pays to be your own advocate and do your own research along with discussing alternatives with your doctor. I've been fortunate to have a great primary care team but realize everyone might not be as fortunate which is another reason to advocate for your health and learn as much as you can about the condition and what helps or makes it worse.

I started taking prednisone in an emergency situation because I was having episodes of temporary vision loss from GCA. A few days later I had an initial appointment with my rheumatologist, and he recommended I take calcium and vitamin D supplements and Fosamax to counteract the possible bone loss from the prednisone. I stopped the Fosamax soon afterward due to acid reflux problems. He also prescribed a proton pump inhibitor to alleviate stomach irritation from the prednisone. He didn't have any suggestions for insomnia. I researched that on my own and found some relief with time-release melatonin.

I agree with @johnbishop and I don't think there is a gaping hole in the medical system about Prednisone side efforts. Medical professionals are well aware of all the side effects which is why they universally want us off steroids as soon as possible.

Having seen Prednisone side effects first hand in a hospital setting, I already knew Prednisone came with serious long term side effects. My only illusion was that I could handle the prednisone side effects until I realized that I couldn't handle them any longer.

During my 12 years on Prednisone to treat PMR, I learned many things that I didn't know. In that sense, I had a gaping hole in my personal knowledge. The same was true for my knowledge about PMR and autoimmune conditions in general.

Now I'm learning things about biologics and their role in treating PMR/GCA. I would agree there is a gaping hole about treating PMR/GCA with biologics.

My having many prednisone side effects and my inability to taper off Prednisone was why my rheumatologist wanted me to try a biologic. When the biologic was started my rheumatologist was very tentative. He wasn't sure what dose I would need so he started me on a low dose to "play it safe."

The only thing I was told about prednisolone when I started on it was that I would need to very slowly reduce the dose because it suppressed adrenal function and the adrenal glands needed time to "wake up" as I reduced. When I got the script I was shocked to see the reduction schedule would have me on it for well over a year at best and possibly two years...if the reduction went to plan. Now I know it often doesn't.

The PMR pain was so disabling that I couldn't use the computer to research it properly till I was already on prednisolone and the pain was reduced. I did tell the doctor at the time that the pain was so bad and I'd slept so little in the two months prior that I was prepared to take anything that wouldn't kill me. So she prescribed and I grabbed it gratefully. Afterwards I found out about skin thinning, bone effects, etc. I don't blame the doctor for anything. She helped me regain functionality by prescribing it.

I received quite a lecture from Mayo clinic. I had decided on my own to treat myself with my wifes dexamethasone. A stronger version of prednisone. He continued to prescribe the Dex after making sure I knew the risks. My PA would not even treat me without the rheumatologist order. I believe dadcue is right. Everyone knows the side effects but as a Dr. you have something that works. Do you withhold it from your patient due to side effects? Probably not. I think everyone suffers some side effects from prednisone but not all suffer to the same degree.

My rheumatologist always tells me about side effects, although due to the length of the visit he can't discuss all of them. He did that for the prednisone, then methotrexate, then Kevzara. He put me on Fosamax and vitamin D right away with the prednisone to prevent bone loss, though I did not have osteoporosis. I consider it my job to research other side effects. It's hard work having a disease, dealing with the complexities of insurance coverage , educating myself, and finding out what lifestyle changes are needed. We can't rely on the modern medical system to do all of this for us, unfortunately. I worry about what will happen as I decline cognitively and can't do this as well as I can now.

"I was prepared to take anything that wouldn't kill me."
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That was my excuse for taking Prednisone like I did. I would say things like the pain was torture and the only thing I knew that might make the torture stop was to take Prednisone. Some of the time the reason for taking prednisone wasn't for PMR. I didn't really care as long as the pain stopped.

I remember sitting smugly at one of my rheumatology visits after I had upped my Prednisone dose to 60 mg. My rheumatologist was focused on my MRI results and all the details of my recent emergency room visit. She finally turned to me and said I had severe spinal stenosis and it wasn't PMR. She wanted to know why I took so much Prednisone.

I told her they wanted to do an emergency lumbar fusion except Prednisone made surgery too risky. The radiating leg pain was so severe I would have signed any surgical consent form ... even a leg amputation! I figured that I was in way over my head already so more Prednisone was all I knew to do. Prednisone stopped the pain. My rheumatologist was glad the pain stopped but said it wasn't what she would have recommended.

Now that I'm off Prednisone the spine surgeon says I can do surgery whenever I'm ready. I don't have the pain anymore so I'm not ready for surgery. I don't intend to do the lumbar fusion anytime soon but my legs are weak and somewhat numb.

Pain might change my mind regarding surgery. The spine surgeon says pain should not be the only factor to consider. When I was taking Prednisone and faced a greater risk of doing the surgery ... the spine surgeon said pain should be the "deciding factor" for doing surgery.

No. But I was put on a low dose due to a heart problem (Atrial Fib, then Atrial Flutter, the latter caused by the Prednisone.) I didn't look at possible side affects until about a month or so in, when I washed my hair and about 1/3 came out in the comb. You can now see parts of my scalp on top as I never had very thick hair to begin with. My rheumatologist and Cardiologist had discussed the affect the steroids might have on my heart but agreed the Prednisone was necessary 15mg. to start, and I then read that hair loss happened in some people. By the way I am 75 yrs. Old. Am going to start wearing a natural looking wig.

"I received quite a lecture from Mayo clinic. I had decided on my own to treat myself with my wifes dexamethasone."
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You can probably imagine the lecture I received when I told my wife's primary care doctor that I had been taking Prednisone for 20 years for "all kinds of pain." When she asked who my primary care doctor was, I told her that I didn't have one which was why my wife brought me in.

My wife wasn't very helpful as she just sat there telling me not to leave out any details. If I did, she filled in the details for me.

When it was all said and done, I left without a prescription for prednisone which was all I wanted. I got a referral to a rheumatologist instead.

At least I was taking leftover Prednisone that was prescribed to me, My ophthalmologist prescribed boatloads of Prednisone every time I had a flare of uveitis. My ophthalmologist was only worried about my eyes and eye pain and he never asked me about all over body pain.

I had been seeing a neurologist for trigeminal neuralgia (TN) until they said TN wasn't treated with Prednisone because of side effects. I stopped seeing the neurologist and took Prednisone for TN too. There was no amount of Prednisone I wouldn't take to make the TN attacks stop. Of course, treating myself with Prednisone only delayed the TN surgery that I had by about 20 years. Nobody knew TN was still a problem. The surgery actually stopped those TN attacks.

I agree with you regarding navigating the "modern medical system". I have always advocated for myself in life. I feel like it's in my best interest to know the side effects of a medication prior to taking it. I don't rely on a doctor to tell me, as with prednisone, it would take a half hour! I am fortunate that I haven't had any issues with insurance. We don't need the additional stress in dealing with insurance companies. My providers submit to Medicare and it's taken care of.

For the first six months of my PMR/GCA journey, I would bring a printed list of questions/comments to my doctor's appointments. She appreciated it and I never left an appointment thinking that I forgot to ask a question.