1. < Polymyalgia Rheumatica (PMR)

Has anyone successfully weaned off prednisone without using a biologic

Posted by tobeybaby @tobeybaby, Aug 16 10:01am

Has anyone successfully weaned off prednisone without using a biologic and if so, how long did it take and what were your symptoms along the way?

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yertondg | @yertondg | Aug 24 10:30am

Honestly, with the stability attitude of the former rheumatologist, I have become lazy in any documentation. Thanks for your encouragement to track both my pain and dosage. Over-achievement has been my life-long pattern, so when I was instructed to reduce and the first step went so easily, my attitude was that I can be more aggressive and pushed the recommended schedule. So, I may be at this level for a bit longer until my adrenal processes catch up.

I'm also blessed to have found a group that can relate. Thanks for being a part of this.

REPLY
DadCue | @dadcue | Aug 24 11:20am
In reply to @johnbishop "Welcome @yertondg, Sorry you've had such a struggle with PMR and hopefully the new rheumatologist can..." + (show)
@johnbishop

Welcome @yertondg, Sorry you've had such a struggle with PMR and hopefully the new rheumatologist can help you taper off of prednisone. You are right that each case is different. My first time with PMR took 3 and half years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I finally could taper off and only have minimal aches and pain when I woke up in the morning that would go away as I started moving around. @dadcue and others may also have some suggestions for you.

There is a slow tapering plan that is listed on the HealthUnlocked PMR site that you might find helpful -
Dead slow and nearly stop reduction plan (DSNS - Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan
Do you keep a daily log of your level of pain when you get up in the morning and your prednisone dose for that day?

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@yertondg

I posted a video about the "gold standard" for tapering off prednisone for the treatment of PMR. The take away from the video is that there is NO gold standard for tapering off Prednisone for PMR.


-------------------------------------
The 7 mg dose of Prednisone is a tough hurdle to overcome. Maybe inquire about something that doesn't suppress your adrenal function instead of Prednisone. The symptoms of adrenal insufficiency from long term treatment with Prednisone get more and more apparent after you reach that 7 mg barrier.

I took Prednisone for 12 years to treat PMR. I tried several Prednisone sparing medications until a biologic called Actemra (tocilizumab) allowed me to taper off Prednisone in less than a year. It might have only taken me 3 months to taper off except I needed to wait nearly a year for my cortisol level to improve.

I have currently been off Prednisone for the last 3 years.

I personally think 4 years on prednisone is long enough. There comes a time when a different approach to the treatment of PMR is needed.

There is a similar biologic called Kevzara (sarilumab) that was recently FDA approved for PMR.
https://www.kevzara.com/pmr#:~:text=KEVZARA%20is%20the%20first%20biologic,KEVZARA%20is%20not%20a%20steroid.&text=KEVZARA%20may%20help%20relieve%20signs,a%20tapering%20dose%20of%20steroids.&text=Join%20the%20KEVZARA%20mailing%20list,you%20get%20started%20on%20treatment.
--------------------------

There is another discussion about the history of PMR from past to present that you might be interested in.
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/?pg=2

REPLY
jabrown0407 | @jabrown0407 | Aug 24 12:12pm
In reply to @yertondg "I have been on prednisone for 4 years and have recently changed rheumatologists due to the..." + (show)
@yertondg

I have been on prednisone for 4 years and have recently changed rheumatologists due to the previous one relocating. Progress had been made in reducing dosage from 20 to 8 mg during that time. The new specialist plans a more aggressive reduction schedule. The first change was to drop to 7 mg and stop the Hydroxychloroquine completely. The effect on my mobility of the first drop was nominal. But after two 0.5 mg reductions over 6 weeks, I am at 6 mg, but really suffering with the last step down. The last couple of days, I've had swelling around my knuckles, weakness in my grip, tingling in my hands, discomfort in my shoulders (causing restless, uncomfortable sleep) and during a 2 mile walk yesterday, soreness in my hips.

I'm sure each case is different, but need some sort of timeline on the progression path. Am I looking at a 6 month or 4 year objective? Even that would help with the mental health aspect of this affliction.

I'm scheduled for neck x-rays next week before my next appointment the following Tuesday. Perhaps, I'll know more after.

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First I am in total awe that you can casually say you walked 2 miles. I have had a 1 mile goal for 3 years and am not giving up on the goal. I was diagnosed with PMR in early 2020 after being sick for one year without a diagnosis. Right now I am about at 0.2 miles, so in that way you are ahead of me literally by miles!

As for your effort to get off your PMR steroids. I would suggest you talk to your Rheumy but I would also suggest that you do not have to agree to drop to where you are having pain and then staying at that painful level. You are entitled to go back up to a pain free level then try again in 2-4 weeks to drop a little to see if you can now tolerate a lower dose. Everyone is different.

Long term steroids has multiple side effects that are real and if you have not already I would encourage you to talk with your PCP and your Rheumy to be tested for things like bone density issues, eye exam, blood sugar/blood pressure problems and possibly a few other known side effects. Among the side effects can be adrenal insufficiency, which you could easily be having based on your problems with dropping below 10mg of steroids. Four years is definitely long-term use of steroids and it may take patience for your body to embrace what you and your doctor have both intellectually embraced. Your mind may be willing, but your body is in charge!

As for how long it will take to feel normal again is a matter of what you are willing to accept as normal. If you have a long-term goal of getting off steroids and being pain free then stick with it. It may take a year, but progressed needs to be measured in 90 to 180 day intervals and not always 30 days. I see your progress as going from 20mg to 8mg and going off Hydroxychloroquine completely. Both of those are wins. Track your progress as well as your pain.

One other item, I went after many of my pains individually and discovered problems like osteo arthritis in my knees that have no relationship to PMR. Steroids would hide this problem. As I came off my steroids several problems showed up that needed to be addressed as unrelated to PMR yet masked by steroid treatments.

REPLY
2 replies
DadCue | @dadcue | Aug 24 12:54pm
In reply to @jabrown0407 "First I am in total awe that you can casually say you walked 2 miles. I..." + (show)
@jabrown0407

First I am in total awe that you can casually say you walked 2 miles. I have had a 1 mile goal for 3 years and am not giving up on the goal. I was diagnosed with PMR in early 2020 after being sick for one year without a diagnosis. Right now I am about at 0.2 miles, so in that way you are ahead of me literally by miles!

As for your effort to get off your PMR steroids. I would suggest you talk to your Rheumy but I would also suggest that you do not have to agree to drop to where you are having pain and then staying at that painful level. You are entitled to go back up to a pain free level then try again in 2-4 weeks to drop a little to see if you can now tolerate a lower dose. Everyone is different.

Long term steroids has multiple side effects that are real and if you have not already I would encourage you to talk with your PCP and your Rheumy to be tested for things like bone density issues, eye exam, blood sugar/blood pressure problems and possibly a few other known side effects. Among the side effects can be adrenal insufficiency, which you could easily be having based on your problems with dropping below 10mg of steroids. Four years is definitely long-term use of steroids and it may take patience for your body to embrace what you and your doctor have both intellectually embraced. Your mind may be willing, but your body is in charge!

As for how long it will take to feel normal again is a matter of what you are willing to accept as normal. If you have a long-term goal of getting off steroids and being pain free then stick with it. It may take a year, but progressed needs to be measured in 90 to 180 day intervals and not always 30 days. I see your progress as going from 20mg to 8mg and going off Hydroxychloroquine completely. Both of those are wins. Track your progress as well as your pain.

One other item, I went after many of my pains individually and discovered problems like osteo arthritis in my knees that have no relationship to PMR. Steroids would hide this problem. As I came off my steroids several problems showed up that needed to be addressed as unrelated to PMR yet masked by steroid treatments.

Jump to this post

"As for how long it will take to feel normal again is a matter of what you are willing to accept as normal."

I can laugh at myself now but I accepted shortness of breath as normal when I was taking prednisone.

I argued with the urgent care doctor who called an ambulance to take me to the emergency room. I said, "if I wanted to go to the emergency room, I would have driven myself there." The urgent care doctor stood her ground and wasn't going to let me leave.

I thought the emergency room doctor would be more reasonable. I told him, "shortness of breath was normal for me and it wasn't any worse than it usually is." I asked if I could go home and I promised to call my primary care doctor. The emergency room doctor asked me about chest pain which I denied. I said I didn't have much pain as long as I took enough prednisone.

The emergency room doctor said my chest CT scan showed I had extensive, bilateral and multiple pulmonary embolisms. The emergency room doctor said there was a bed waiting for me in the intensive care unit.

The intensive care doctor said in all his many years of experience, he had never seen anything like what my chest CT showed. I suggested that maybe it wasn't my chest CT because I felt "normal" when I took prednisone. The intensive care doctor suggested I was taking too much prednisone because I wasn't normal. He added that taking prednisone wasn't normal for anyone.

REPLY
1 reply
yertondg | @yertondg | Aug 24 12:59pm
In reply to @jabrown0407 "First I am in total awe that you can casually say you walked 2 miles. I..." + (show)
@jabrown0407

First I am in total awe that you can casually say you walked 2 miles. I have had a 1 mile goal for 3 years and am not giving up on the goal. I was diagnosed with PMR in early 2020 after being sick for one year without a diagnosis. Right now I am about at 0.2 miles, so in that way you are ahead of me literally by miles!

As for your effort to get off your PMR steroids. I would suggest you talk to your Rheumy but I would also suggest that you do not have to agree to drop to where you are having pain and then staying at that painful level. You are entitled to go back up to a pain free level then try again in 2-4 weeks to drop a little to see if you can now tolerate a lower dose. Everyone is different.

Long term steroids has multiple side effects that are real and if you have not already I would encourage you to talk with your PCP and your Rheumy to be tested for things like bone density issues, eye exam, blood sugar/blood pressure problems and possibly a few other known side effects. Among the side effects can be adrenal insufficiency, which you could easily be having based on your problems with dropping below 10mg of steroids. Four years is definitely long-term use of steroids and it may take patience for your body to embrace what you and your doctor have both intellectually embraced. Your mind may be willing, but your body is in charge!

As for how long it will take to feel normal again is a matter of what you are willing to accept as normal. If you have a long-term goal of getting off steroids and being pain free then stick with it. It may take a year, but progressed needs to be measured in 90 to 180 day intervals and not always 30 days. I see your progress as going from 20mg to 8mg and going off Hydroxychloroquine completely. Both of those are wins. Track your progress as well as your pain.

One other item, I went after many of my pains individually and discovered problems like osteo arthritis in my knees that have no relationship to PMR. Steroids would hide this problem. As I came off my steroids several problems showed up that needed to be addressed as unrelated to PMR yet masked by steroid treatments.

Jump to this post

Thanks again!

REPLY
thenazareneshul | @thenazareneshul | Aug 24 4:45pm
In reply to @dadcue "What you have described is one of the reasons why long term prednisone use can end..." + (show)
@dadcue

What you have described is one of the reasons why long term prednisone use can end up being detrimental to your health. There are times when the side effects from medications exceed the benefits and Prednisone is no exception. It is nearly impossible to abruptly discontinue Prednisone when it is necessary.

"So, getting off the Prednisone was lifesaving."

I agree with you ... it was for me too. However, I needed a biologic when I was unsuccessful at tapering off prednisone for 12 years. I'm in awe of anyone who succeeds without the help of an alternative medication.

I tried several alternatives until my rheumatologist found something that worked. My medical records shows a list of "failed" medications. I suspect the other medications failed because they didn't get me off Prednisone rather than they didn't help to manage PMR pain. Even when my rheumatologist submitted the request for the biologic -- what was emphasized the most was an "inability to taper off Prednisone."
"

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Been thinking about your remark of being "in awe of anyone who succeeds without the help of an alternative medication."

I had no choice. I was given no choices. I was living in Alaska, we didn't even have a Rheumatologist I could get to. I still don't have one, even which a new diagnosis of CFS to deal with. It's not new, they're just finally getting around to that one, it was there before the PMR. We had an ARNP who ordered the Prednisone for me, she even diagnosed it (right). I went off and just sucked it up, pain-wise. Because imagine for a minute you suddenly had to do everything with a 90 lbs extra on your back (whole body). You drop something on the floor, you get down and then gotta get back up with 90 lbs on your back? Go to the bathroom, imagine what that does to your knees, everytime, up and down when you're a girl. Worse to get into the tub and back out, very carefully, so as not to slip. The stress that put just on my heart was terrible. I had to make the weight gain stop, or die. I knew the weight gain was gonna kill me if I didn't make it stop. I had a minor child to finish raising and her Dad died back in 2002.

I am a person of Faith. I had to trust there was another way. That other way turned out to be a new PCP who told me she thought I'd just plain have to leave Alaska. Well, that made me mad, and then it took me a few months to wrap my head around it, and decide she was right. My kid had to finish school, at least, that year's grade. Then, we did leave. Meanwhile, I got referred finally to a pain management doctor up there, who did have mercy on me and wrote hydrocodone and did some tiny steroid injections in joints. And in the end, we lost all but what we flew out with, in suitcases, and what was in my van that I'd put some extra stuff in, and had shipped down separate from the rest of our household stuff.

Art, some old furs, almost all my furniture, handmade rugs, clothes, everything else got stolen by the movers. Bummer, big time. That was 8 years ago and we are just now getting the nice home something like what we lost by moving.

Why moving? The cold. It turned out the most important thing for me with the PMR was the cold up there. Even my fingers and hands had started turning white indoors, up in Alaska, which is another autoimmune disease. Without the extreme cold, and by staying warm (not hot) long enough my PMR went into remission. If I get caught in the cold too long here, it tries to come back again too, every time. So, I use a heated throw over my feet, most nights. Sorta cheap compared to the other options. I still needed both feet operated on once I got out of AK. One right away, and the other, finally, earlier this year. They both now have metal in them, reinforcing them.

The Lyrica I'd been put on in AK has turned into Gabapentin, and there's Tylenol, and lots of other non-opoiods, but the PMR stays away. It's lurking though.

REPLY
jfannarbor | @jfannarbor | Aug 24 6:50pm
In reply to @johnbishop "@tobeybaby, I've had PMR twice and was able to taper off of prednisone both time without..." + (show)
@johnbishop

@tobeybaby, I've had PMR twice and was able to taper off of prednisone both time without using a biologic. First time took me 3 and half years to taper off and it stayed in remission for 6 years. I was again started on 20 mg prednisone and was able to taper off of prednisone in 1 and a half years. I think it was easier tapering off the second time around because I changed my lifestyle and started eating healthier and exercised more. I still struggled in the mornings for both times with the PMR with aches and stiffness but it gradually got better. I have been in remission for the second time for a little over 6 years and hoping it never comes back.

Jump to this post

As I mentioned I have been on and off prednisone (P) 10 times. The most P I ever took was 10 mg per day. The effect was immediate within 6 hours I was without pain. Now my rheumatologist think I did not have PMR and I am being treated for spondylo arthritis. None of the medications I am taking does away with the shoulder and hip girdle pain. By accident I started taking Tylenol and it seems the most important drug I take.

REPLY
jabrown0407 | @jabrown0407 | Aug 25 7:44am
In reply to @dadcue ""As for how long it will take to feel normal again is a matter of what..." + (show)
@dadcue

"As for how long it will take to feel normal again is a matter of what you are willing to accept as normal."

I can laugh at myself now but I accepted shortness of breath as normal when I was taking prednisone.

I argued with the urgent care doctor who called an ambulance to take me to the emergency room. I said, "if I wanted to go to the emergency room, I would have driven myself there." The urgent care doctor stood her ground and wasn't going to let me leave.

I thought the emergency room doctor would be more reasonable. I told him, "shortness of breath was normal for me and it wasn't any worse than it usually is." I asked if I could go home and I promised to call my primary care doctor. The emergency room doctor asked me about chest pain which I denied. I said I didn't have much pain as long as I took enough prednisone.

The emergency room doctor said my chest CT scan showed I had extensive, bilateral and multiple pulmonary embolisms. The emergency room doctor said there was a bed waiting for me in the intensive care unit.

The intensive care doctor said in all his many years of experience, he had never seen anything like what my chest CT showed. I suggested that maybe it wasn't my chest CT because I felt "normal" when I took prednisone. The intensive care doctor suggested I was taking too much prednisone because I wasn't normal. He added that taking prednisone wasn't normal for anyone.

Jump to this post

OMG - I am so glad you decided to go to urgent care. Steroids can be naughty for sure!

REPLY
1 reply
DadCue | @dadcue | Aug 25 8:57am
In reply to @jabrown0407 "OMG - I am so glad you decided to go to urgent care. Steroids can be..." + (show)
@jabrown0407

OMG - I am so glad you decided to go to urgent care. Steroids can be naughty for sure!

Jump to this post

I didn't decide to go to the urgent care center. I was making a meatloaf for dinner and had just put it in the oven. I decided I had enough time to go to the bank. The bank teller said I should go to the urgent care center which happened to be next door to the bank. I thought I was being kidnapped when the ambulance was called. The reason I asked to go home when I got to the emergency room was so I could take the meatloaf out of the oven.

The entire sequence of events made me realize that taking more prednisone whenever I had more discomfort wasn't normal. It was a turning point in my life on Prednisone. I started looking for ways to get off Prednisone.

I posted something on a chronic pain website about "Alternatives to Prednisone." Someone who had an adrenal crisis recognized herself based on some of the things I posted. I mentioned that I felt more normal when I took prednisone. She said the following, "That you feel more “normal” on prednisone is also highly suggestive of adrenal inadequacy vs. inflammatory origin of your pain."

I liked your comment about, ""As for how long it will take to feel normal again is a matter of what you are willing to accept as normal." It really nailed the problem with taking prednisone in my opinion.

I didn't realize how abnormal it was to need to take prednisone. I didn't fully realize this until I was able to discontinue prednisone.

REPLY
1 reply
jabrown0407 | @jabrown0407 | Aug 25 9:13am
In reply to @dadcue "I didn't decide to go to the urgent care center. I was making a meatloaf for..." + (show)
@dadcue

I didn't decide to go to the urgent care center. I was making a meatloaf for dinner and had just put it in the oven. I decided I had enough time to go to the bank. The bank teller said I should go to the urgent care center which happened to be next door to the bank. I thought I was being kidnapped when the ambulance was called. The reason I asked to go home when I got to the emergency room was so I could take the meatloaf out of the oven.

The entire sequence of events made me realize that taking more prednisone whenever I had more discomfort wasn't normal. It was a turning point in my life on Prednisone. I started looking for ways to get off Prednisone.

I posted something on a chronic pain website about "Alternatives to Prednisone." Someone who had an adrenal crisis recognized herself based on some of the things I posted. I mentioned that I felt more normal when I took prednisone. She said the following, "That you feel more “normal” on prednisone is also highly suggestive of adrenal inadequacy vs. inflammatory origin of your pain."

I liked your comment about, ""As for how long it will take to feel normal again is a matter of what you are willing to accept as normal." It really nailed the problem with taking prednisone in my opinion.

I didn't realize how abnormal it was to need to take prednisone. I didn't fully realize this until I was able to discontinue prednisone.

Jump to this post

I hope you have returned to the bank to take that teller a bouquet of roses! And good for you for following her advice. I'm going to go out on a limb and say that I suspect something inside you knew things were not normal and once the bank teller pointed it out you realized how completely your life was out of focus.
I hope a neighbor was able to rescue your meatloaf. Life is always interesting.

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