I am afraid the pain will never end.

Mike, by now I hope you have found some peace of mind. What a long journey. As I said piously, Thank you.

It is, and has been, my personal responsibility to share with this group my experiences. I try and provide support to any and all messages to the group that might be helpful. Mind you, in my darkest days, I have had wonderful support around me. Albeit, not my Rheumatologist. Finally, I wish the drs would tell us abt this group. My PCP ow shares it after I told her.

This is so beyond everything that anyone has ever reviewed with me. Thank God for this group and for your willingness to share and help each other.

The title of this topic is, "I am afraid the pain will never end."

The fear is what needs to stop. It only adds more stress and PMR thrives on stress. When we talk about it, understand what happened, describe it to ourselves and others, then the pain eventually decreases. If the fear of pain takes over, the suffering never ends. I hate the terminology that we are "PMR sufferers."

A therapist helped me to understand the difference between pain and suffering. The expectation that I should be "pain free" wasn't realistic for me.

The biologic I currently take also helped a great deal. I told the therapist I was only in the "eye of the storm" when I first tapered off prednisone while on the biologic. I was afraid to do anything because I thought the storm was still all around me.

Eventually, I decided to aquacise and I still do this. At first I was afraid that I would drown until I discovered I could still swim! Swimming hurt a bit at first but I expected it to hurt.

EVERYONE READ THIS NO MATTER WHERE YOU ARE IN YOUR JOURNEY!
Thank you Mike/Dad

Yes, thank you. I am currently in the midst of the pain AND the fear of pain.

Yikes.

Thanks for this information. It does frighten me terribly.

I'm currently down to 7mg with pain. No pain at all until under 10. I can deal with some pain; I just don't want to hurt myself. After reading the info on ths post, I'm worried about adrenal insufficiency and will ask my rheumy for a reference.

Like most PMR people, I'm extremely active. My problem is that everyone thinks I'm fine. I babysit my granddaughter, which is my greatest joy, yet it's exhausting. Lately, I have had some fatigue issues that I haven't had. (I've been on prednisone 6 months.) To say my family and friends don't understand is an understatement! I run/walk 5-7 miles every single day and lift 4 days a week in addition to the babysitting. I'm in a mess here.

This support group really makes me feel like I'm not alone. Thanks for all the comments. I'm awaiting that "peace of mind" era.

I am waiting for peace of mind to set in as well. Far from there. Like you, I need to figure out the difference between a PMR flare and adrenal insufficiency pain. I didn't even know about this until participating with this group. I am trying to get an appointment with an endocrinologist to help with the taper but the ext available appointment is April 2026. Clearly that is not the answer. Lol. And, yes, it is good to know that we are not alone.

"I need to figure out the difference between a PMR flare and adrenal insufficiency pain."
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The difference doesn't matter that much because both are treated the same. More prednisone or some other corticosteroid is the treatment for both.

PMR pain and adrenal insufficiency pain probably coexist at lower doses the prednisone.The pain and fatigue from both conditions overlap so much it is nearly impossible to distinguish one from the other. I couldn't distinguish the two until I got past 7 mg of prednisone and stayed on 3 mg for a long time. Only when I was taking Actemra to keep PMR under control could I separate what was PMR and what was adrenal insufficiency.

What you can do is be open to alternative medications which don't suppress adrenal function while helping to control PMR inflammation. They are called "steroid sparing medications" for a reason. Methotrexate might work ... maybe leflunomide or something else.

Actemra or Kevzara might be more of a last resort but I think biologics should be tried sooner rather than later. It is a pity that biologics are so expensive. However, patients with other autoimmune conditions get biologics to treat their conditions. PMR and GCA are lagging behind in terms of treatment options.

There are some who believe prednisone works just fine and the side effects are "easy to manage." However, long term use of prednisone is never recommended by the medical community. We need better options than prednisone. Prednisone might be fine for some people but it suppresses the adrenal function for the vast majority of people.

Fortunately, more alternatives to prednisone are being researched and some alternatives are more effective than prednisone for some conditions.

Actemra (tocilizumab) works for me but it wasn't easy for me to get it 6 years ago. During Covid, I couldn't get Actemra at all. I relapsed and needed 15 mg of prednisone again for about 6 months. The amazing thing was when Actemra was restarted, I tapered off Prednisone going from 15 mg to zero again in just a month or two. Prior PMR flares without Actemra would set my Prednisone taper back many months and sometimes a year or more.

Again, thank you! Where I am getting confused, tho, is I thought that the pain was part of the adrenal glands getting fired up and in working order again. That pushing thought the pain is what it would take to jump start the adrenals, otherwise they would be chronic under performers, so to speak... I do apologize for taking up so much of your time and effort, but it is a life line.

Pushing through "increasing pain" while continuing a taper probably isn't a good idea.

I believe what happens more often is that people immediately increase their prednisone dose for any uptick in pain. Each new pain should be investigated because it might not be PMR. However, doing another investigation isn't always practical after PMR is diagnosed.

Much of my pain through the years wasn't anything like my original PMR symptoms. I would complain to my rheumatoloist that I thought PMR slipped out the back door and the treatment left me in a world of hurt. She seemed to understand but it still meant I needed to take prednisone.

I understand wanting to be "pain free" but perhaps that won't facilitate tapering off prednisone. It is more about accepting "tolerable pain" vs "no pain." The "fear of pain" sometimes controlled me more than the pain. Does that makes sense?

I'm not the best person to tell anyone how to taper off prednisone since I took it for 12 years for PMR. I'm in awe of people who are able to taper off prednisone sooner than I did. However, the experience with Prednisone I had before PMR was diagnosed was that I could routinely taper off prednisone going from 60 mg to zero in a month or two. My ophthalmologist who was treating uveitis said I was "skilled" at doing Prednisone tapers. I had a lot of practice treating flares of uveitis which can also cause vision loss. The only difference was "short term" vs "long term" prednisone use.

In spite of 12 years on prednisone ... I was able to taper off. In some ways it was harder for me to taper off prednisone after such a long time. The biologic I now take made it much easier for sure. The other thing that helped me was when I was told that I should NOT taper at all when I was at 3 mg. It was hard to resist the temptation to increase my prednisone dose but the endocrinologist said to only increase my dose when it was "absolutely necessary."

The difficulty was knowing if it was necessary or not because it wasn't like having "no pain." I had to stay on 3 mg for six months until my cortisol level improved. Six months wasn't a "predetermined" length of time. My endocrinologist actually said "as long as it takes" for my cortisol level to improve.