PMR - Decreased prednisone and pain returned

Thank-you for this excerpt. Does the following link take you to the entire context?

I have skimmed this article. Where does it say, "The use of the steroids and the taper actually re-creates the PMR."

I was booted off another PMR forum for saying something similar to this. It reflects my opinion only which I clearly stated. Their position was that cortisol and/or *adrenal insufficiency" had nothing to do with relapses.

The following article spells it out in the Discussion Section:

I have to find it. I copied it from an NIH document and posted it on a facebook PMR site. I made a copy of it in my email. So it was word for word but I need to find the document search. Same happened to me on the facebook page. I am not an expert but my wife has glioblastoma. Drug of choice is dexamethasone. I have researched steroids for 3 years. Mainly because I further poison her body and reduce her immune system every day when I give her the medication. Her oncologists all agree with us but just say "she has terminal cancer, make her comfortable" I have tried numerous times to get her off and it immediately increases the inflammation. Not good in the brain. I got PMR probably from the stress. I used Dex to reduce it. Took 6 months but I finally had clear markers and just stopped. Kicked my butt for about 2 weeks but I got off. I kicked it. PMR is real because it shows up when your not on a steroid. But the steroid mimics the pain into a vicious cycle that everyone sees as a flare. Your right in my opinion. Most everyone is just hooked on the steroid.

I also saw and NIH study of 25 patients they attempted to take off long term steroid use. None of the 25 were able to wean completely. I would have to find that one also. So the cortisol production is a very real issue. No one is crazy thinking they are weak and just cant do it. It also increases the pain which then increases the inflammation and restarts the whole process. So cortisol deficiency is real and PMR is real. I see everyone get to 5-7 mg and say they have a flare and had to go back. Its a never ending story.

Sorry to hear about the glioblastoma. I'm a retired neurosurgery nurse.

I don't think this concept is that controversial. I took prednisone for 12 years for "refractory PMR." Adrenal insufficiency was "discovered" only when I could maintain a prednisone dose of 3 mg. A simple a.m. cortisol level determined that adrenal insufficiency was likely so I was referred to an endocrinologist.

Long story ... but the only reason I could maintain a 3 mg dose of Prednisone was because I was started on a biologic medication called Actemra (tocilizumab). The endocrinologist said she was surprised that I had been on Prednisone so long. She wasn't optimistic that my cortisol level would ever improve. She said I might need to take Prednisone for the rest of my life.

I had to wait months for my cortisol level to improve but it did improve enough for my endocrinologist to say my cortisol level was "adequate." She said it "might be safe" to discontinue Prednisone but she wouldn't make any predictions about what would happen.

I discontinued Prednisone going from 3 mg to zero in about a week. Many things happened but not a PMR flare. I still do a monthly infusion of Actemra and haven't had any PMR relapses in 3 years. My quality of life has improved immensely since discontinuing Prednisone.

Thank you! So frustrating that doctors don't tell you these things. I've seen 4 on this issue. sigh!

You are my hero. I have tried to offer my suggestions to many taking Actemra or Kevzra. I have done some research on both to understand. Actemra works on the IL-6 same as Kevzara but appears to have better results on GCA. I think many are confused that this also helps cortisol/steroid outcomes. Which it does if the inflammation is being caused by PMR. So it helps get you down to that 5mg range then the cortisol takes over. Most then are stuck taking both medications. I will look for that article.

My rheumatologist did a bit of a test before starting Actemra. I was asked to taper my Prednisone dose as low as possible. I was okay on 10 mg at the time but that dose was achieved only after 12 years of PMR. I could decrease to 7 mg before I was forced to retreat back to 10 mg.

After Actemra was initiated, I blew past that 7 mg dose and suddenly found myself on 3 mg. I tapered by 1 mg per week after blowing past 7 mg until I reached 3 mg.

I had overwhelming fatigue and pain but nothing resembling PMR symptoms. That was when my cortisol level was checked. My rheumatologist ordered me not to taper any lower than 3 mg and referred me to the endocrinologist.

your comment of where that statement is located is in the link you sent. You go down several pages until you see a chart Acute and Chronic. The comment is in the footnotes of the chart.

Your an asset to the PMR community in my opinion. I stay on these sites since as a caregiver I have time. I deal with the ravages of steroids every day watching my wife deteriorate. Her face is swollen, neck swollen, her skin is like a Georgia peach, 0steoprosis, who knows what else. She is on 1.5mg dex for the last 2 years and thats what has happened. I stopped 2 years ago. But in the last year I had 2 flare issues. Knowing what PMR symptoms were this time around I did a 5 day dose of dex starting at 4mg day 2 - 3mg day 3 and 4 - 2mg and day 5 -1mg. then stopped. No pain. PMR was gone. I used the thought it takes a week to stop cortisol production. They also prescribe 5 day packs for allergies and various other conditions. I am in the experimental stage so not sure if the PMR pain was still active what I would have done next. Gone to a stronger first day dose? Dex is about 5 times stronger than prednisone . so 4mg would be 20mg prednisone.

You are a Saint for being a caregiver to your wife. I understand the ravages of steroids and they are widely used in neurosurgery. I have very mixed feelings. I had a hard time on another forum hearing how steroids are promoted as a miracle for PMR sufferers and the "only option." I think PMR patients should be clamoring for better options or nothing will ever change.

You might be interested in a dialog I had on another forum. The person who communicated with me was a Saint too. She made me aware of the consequences of long term prednisone use before she died of complications after an adrenal crisis. This conversation happened virtually about the same time my rheumatologist suggested I try Actemra. It was a low point in my life. I desperately wanted to be off prednisone and I was feeling down. I want people to hear her words about the
subject.

The flip side was another forum that promoted lifelong prednisone as a better option than Actemra. One person in particular wasn't very supportive. The other forum collectively of many PMR patients was great though. Unfortunately, the opinions were dominated by just a few individuals. This forum is truly an asset and much better because all viewpoints are respected.

I have posted the following discussion before but I don't know if anyone ever reads it. I think it is good information but I needed to rethink my opinions about Prednisone.

Most doctors realize what happens when someone is on long term steroids. I can never "encourage" any person to take more Prednisone for any longer than is absolutely necessary. Then again, I took high doses of Prednisone for a very long time. I don't know what is the best thing to do. I will say, Prednisone prevented me from being addicted to narcotics so there are benefits to taking Prednisone.