1. < Polymyalgia Rheumatica (PMR)
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Prednisone Taper Stories

Posted by pah17 @pah17, Feb 16 12:03pm

I will be under the guidance of Rheumo to taper Prednisone which is presently 14 mg down from 15 mg. We tried the fast track of 12.5 mg x 3 days, then 10 mg. Symptoms returned. Tight glutes, pain down back of thighs and behind knees along with several hours of morning stiffness and limited mobility. I'd really like to get an idea from those who have successfully tapered if the goal is to be pain-free as opposed to a manageable level of pain or maybe somewhere in between? I'm 73 and I do not have a history of pain or mobility issues. And I was pretty limber. It's new to me to have to struggle to bend to pick up something off the floor. I do have a fair amount of pain at night while trying to sleep, mainly in one hip. And it seems that PMR has heightened my existing neuropathy symptoms.
I will say that none of this is as bad as it was when I went to my PCP for help. I'd appreciate hearing your stories.

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

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ruralgal76 | @ruralgal76 | Mar 3 5:00pm
In reply to @kathy22wright "I share the same question. I was diagnosed with PMR in November and it took a..." + (show)
Profile picture for kathy22wright @kathy22wright

I share the same question. I was diagnosed with PMR in November and it took a higher prednisone dose than most to remove the pain (max 50 mg/day). I’m now at 25 mg/day, split dose, but the pred is disrupting several other systems and I’m anxious to titrate off. I’ll see the rheumy again in a couple of weeks for my 2nd visit and will ask him as well, but am interested in the experience of this community. Personally, I believe living with some level of PMR pain is likely a more strategic choice than letting the prednisone wreak havoc with my endocrine, cardio, and other functions. Good luck to the OP and I will share what I learn from rheumy visit #2.

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@kathy22wright I agree, learn to handle more pain and get off prednisone.. that’s my goal until some thing better comes along.. I love you guys.. thanks for being real!! Cheri

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tweetypie13 | @tweetypie13 | Mar 3 5:11pm
In reply to @caroljeand "@dadcue It takes a lot to feel like exercising after PMR. I’m off prednisone for a..." + (show)
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@dadcue
It takes a lot to feel like exercising after PMR. I’m off prednisone for a week and a half and just on Kevzara. I’m waiting for my energy to return but the fatigue just makes me lazy. I hate this lifestyle and hoping that it’s just my body adjusting to life without prednisone. I do walk but it’s not enough to maintain this 78 year old body. Need to get back to more intense activity.

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@caroljeand
Options for me include, pool walking , pool exercising, find a buddy and make the effort….the quicker you recover. And you’ll sleep.
Also, find a therapist/trainer who specializes in MOVEMENT/Mobility….my saviors

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tweetypie13 | @tweetypie13 | Mar 3 5:11pm
In reply to @ruralgal76 "@kathy22wright I agree, learn to handle more pain and get off prednisone.. that’s my goal until..." + (show)
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@kathy22wright I agree, learn to handle more pain and get off prednisone.. that’s my goal until some thing better comes along.. I love you guys.. thanks for being real!! Cheri

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@ruralgal76
Try biologic…Kevzara….👍

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tweetypie13 | @tweetypie13 | Mar 3 5:28pm
In reply to @prettypatti76 "@caroljeand Hello! First of all, I agree that getting off Prednisone (I call it the Devil..." + (show)
Profile picture for prettypatti76 @prettypatti76

@caroljeand Hello! First of all, I agree that getting off Prednisone (I call it the Devil Drug - because of all the potential damage it can do to your body.) If you see my note, please tell me about Kevzara. And, by the way, 78 isn't old!! I bet you are still beautiful : > )

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@prettypatti76
Kevzara is a biologic made specifically to treat PMR. It’s a shot I self administer bi weekly. Google it…it’s a IL-6 inhibitor and helps with the inflammation and I was able to taper from abt 8mg pred to “0” in3 1/2 months. No side effects .
Covered by my Medicare and supplemental.
It’s 7 months later and hoping Dr takes me off it TOMORROW!

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pah17 | @pah17 | Mar 3 9:24pm
In reply to @cwbf "Everyone is different. Everyone tapers differently. Prednisone conceals pain and so when you taper, orthopedic pains..." + (show)
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Everyone is different. Everyone tapers differently. Prednisone conceals pain and so when you taper, orthopedic pains may appear that you forgot you had or you did not know you had while you were on steroids. As you taper, it is easy to confuse re-emerging PMR pain with emerging orthopedic pain. One way to tell the difference is to get X-rays of your affected areas to determine if you have osteoarthritis as well as PMR and if you do, whether it may be the arthritis not the PMR that is the source of your pain. I have never been "pain free" as I taper but I have recently learned the pain I experience is from arthritis in the hips and stenosis of the spine and not from PMR. I take 1000 to 1500 mg of acetaminophen to control the arthritic pain while I taper from prednisone with the help of Kevzara.

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@cwbf very helpful

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pah17 | @pah17 | Mar 3 9:25pm
In reply to @mwhite6262 "@pah17 Hi there. I had an ultrasound to check for GCA right after my PMR diagnosis..." + (show)
Profile picture for mwhite6262 @mwhite6262

@pah17 Hi there. I had an ultrasound to check for GCA right after my PMR diagnosis but because I am already blind in one eye my doctors were extra careful about the potential risk to my remaining eye and started me on 60mg of prednisone and performed an artery biopsy out of an abundance of caution. Thankfully they have officially ruled out GCA, but I'm glad we went the aggressive route for peace of mind. Wishing the best for you!

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@mwhite6262 thank you.

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david682e | @david682e | Mar 4 6:44am
In reply to @tweetypie13 "@prettypatti76 Kevzara is a biologic made specifically to treat PMR. It’s a shot I self administer..." + (show)
Profile picture for tweetypie13 @tweetypie13

@prettypatti76
Kevzara is a biologic made specifically to treat PMR. It’s a shot I self administer bi weekly. Google it…it’s a IL-6 inhibitor and helps with the inflammation and I was able to taper from abt 8mg pred to “0” in3 1/2 months. No side effects .
Covered by my Medicare and supplemental.
It’s 7 months later and hoping Dr takes me off it TOMORROW!

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@tweetypie13 I have taken prednisone for 30 months now and started kevzars 2months ago.How fast did you taper and how long after starting kevzara did you start taper. Thanks David

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tweetypie13 | @tweetypie13 | Mar 4 7:47am
In reply to @david682e "@tweetypie13 I have taken prednisone for 30 months now and started kevzars 2months ago.How fast did..." + (show)
Profile picture for david682e @david682e

@tweetypie13 I have taken prednisone for 30 months now and started kevzars 2months ago.How fast did you taper and how long after starting kevzara did you start taper. Thanks David

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@david682e
I was at abt 8.5 prednisone when I started Kevzara.
Took 3 1/2 months to taper off prednisone….a very conservative approach.
Kevzara takes up to 3 months to kick in, so I can’t tell you when it actually did.
After that I would use Tylenol for Arthritis as a supplement when ever I did serious activity, e-bike, play and walk the golf course, hike etc.
Working thru returning to a full life, pain free.
At 9 months I hit my 2 yr mark of “most likely” time my PMR started, and it was like the “lights went up” and felt just GREATTTTT.
Note: at 6 months my blood work was “off” so I was switched to shots every 3 wks, with retest of blood work. (Side effects of Kevzara)
Bingo, numbers good and stayed at 3 wk intervals.
I’m a 79yo female with no other medical issues.
Lastly….hoping today’s Dr appt stops the Kevzara 🤞.
PMR is the pits. Hope my story helps you with your journey.

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caroljeand | @caroljeand | Mar 4 8:31am
In reply to @jeff97 "@prettypatti76 I'm sorry you feel bad even though you are being treated. I haven't had to..." + (show)
Profile picture for jeff97 @jeff97

@prettypatti76 I'm sorry you feel bad even though you are being treated. I haven't had to deal with any pain, stiffness, or other symptoms since I started treatment. I took prednisone and Actemra for about a year, and I'm still taking Actemra, so those medications took care of all my pain.

A couple of weeks after I stopped taking prednisone, I had a couple of weeks where I felt very tired, and I also had some mood issues, with irritability and depression. It was unpleasant, but not severe. Other than that, I just felt a little flat for several months after stopping prednisone. I mostly felt ok, but I didn't have any extra energy. After about 4 months I suddenly felt better. I assume that was my adrenals recovering.

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@jeff97
Your statement of feeling “flat” is the best description of how I feel. Just trying to get through the day and exerting energy just for the necessities of daily life. It’s not what I’m used to so too long in this state would cause depression. I don’t think I’m there yet but I just feel frozen in time.

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Mike | @dadcue | Mar 4 9:11am
In reply to @caroljeand "@jeff97 Your statement of feeling “flat” is the best description of how I feel. Just trying..." + (show)
Profile picture for caroljeand @caroljeand

@jeff97
Your statement of feeling “flat” is the best description of how I feel. Just trying to get through the day and exerting energy just for the necessities of daily life. It’s not what I’m used to so too long in this state would cause depression. I don’t think I’m there yet but I just feel frozen in time.

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@caroljeand

"It’s not what I’m used to -- too long in this state would cause depression."
--------------------
I felt similar to this for a long time when I was on Prednisone. Even after I tapered off prednisone it took time to feel better. I described it as being in the "eye of the storm." I always felt like prednisone was just a temporary reprieve from pain.

When I was on Actemra, the eye of the storm didn't seem like such a bad place to be. I wasn't frozen but it was like I didn't want anything to change. I thought the storm might return but instead it dissipated. I felt like a wreck but I also felt like I could "pick up the pieces."

After a few months of physical therapy, I didn't make instant progress but I was getting through all the stretches and exercises easier. I told the physical therapist that things still hurt but the pain was tolerable. What amazed me more was how much my "recovery time" after every exercise improved. I could go from one exercise to the next without much of a rest period between each exercise After every session with the physical therapist ... I didn't need to go home and crash. I thought my adrenal function might be improving since I was off Prednisone.

Now I do long periods when I'm more active. I don't feel like I'm "overdoing anything," I think I should be doing more vigorous exercise. When I was on long term prednisone ... I never felt like I wanted to exercise more because there would be a price to pay.

Instead of lights going up ... I felt like the storm was gone. I had some discussions with the therapist who thought I had elements of Medical PTSD but not clinically depressed. I told her that I felt good as long as I didn't dwell on the past too much. I remember the past but I try not to dwell on it. The storm I was in used to consume me but not anymore.

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