Connect
Off Prednisone but still feeling new type of pain
I've been off Prednisone for 6 months. (I was on Prednisone for 3.5 years). My blood inflammation markers have been normal for years and multiple Rheumatologists and doctors all said I no longer had PMR. So I went off steroids.
So now the question: Has anyone else gone off Prednisone but still plagued with mysterious aches and pains (muscles and joints - but not as severe or similar to PMR)? It's something else, I think.
I can get along okay during the day, but first thing in the morning I'm very stiff and it hurts to move. Also if I sit too long, then the same thing happens. Once I get moving it gets better quickly. Although throughout the day knees, hips and upper arms can occasionally hurt. I can't do things like I used to.
I've seen so many doctors who can't tell me what's wrong.
anyone else?
I don't want to go back on Prednisone and I don't want to resort to other drugs, but quality of life is definitely suffering. So wondering if maybe I should be taking some sort of medication (not Prednisone).
any suggestions?
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
I have had PMR for 13 months and have tapered to 5 mg. prednisone. I find I am in considerable pain until about 10 AM, then things improve and I have little pain the rest of the day. I take the 5 mg in the morning along with 1000 mg of Tylenol. The 8-hour time release Tylenol for arthritis is useless. 1000 mg. of Tylenol in the morning and also in the night when I get up to use the biffy really help. Recently my hands and wrists have been hurting. The past two days I could not lift a coffee cup with my right hand until about 10 AM. Such a strange disease. I have been trying to slowly taper but I think I am throwing in the towel and going to follow my rheumatologist's suggestion and try to get onto Kevzara. My blood levels are also low. And I am a walker and can walk well in the afternoon.
@linnead
Been there, know that feeling. Kevzara was/is my savior.
I resisted going on Kevzara too…..”not another drug in my body”
The Dr. neglected to tell me that Kevzara would help me taper off of the prednisone.
I was at abt 8 prednisone when I started Kevzara, takes 30-60 days to kick in.
I did a slooow taper off prednisone, and was off after 3 1/2 months. Today 10 months later, no other drugs. A, hoping the Dr. will stop the Kevzara at my next appt. Which will be my 2 yr anniversary of diagnosis.
Good luck…..search this blog for other stories on Kevzara.
-
Like -
Helpful -
Hug
2 Reactions@tweetypie13
I received negative feedback on another PMR forum when I sought information about Actemra more than 7 years ago. My rheumatologist was dissed for suggesting such a dangerous drug when it was "well known" that Prednisone was the best treatment for PMR. One opinion was that doctors in the USA were "breaking the rules" by treating me with Actemra. I was risking very serious side effects from Actemra relative to the "manageable" side effects from Prednisone.
I would never trade my last 5 years of being off Prednisone with my preceding 14 years on Prednisone for PMR. I still have concerns that I haven't been able to discontinue Actemra. I'm approaching my 20th anniversary of my PMR diagnosis. However my medical records refer to decades (40+ years) of Prednisone use for all of my autoimmune disorders combined. Actemra seems to keep everything under control for me.
-
Like -
Helpful -
Hug
1 Reaction@tweetypie13
"The Dr. neglected to tell me that Kevzara would help me taper off of the prednisone."
-------------------------
My doctor didn't provide any guarantees. However ... the comment was that Actemra represented my "best chance of ever getting off Prednisone!"
My endocrinologist was less optimistic that I could get completely off Prednisone. She even conceded that I had "resilient adrenals."
@linnead I remember those days. Just like you are describing. Hang in there!
-
Like -
Helpful -
Hug
1 ReactionI am a bit late on this thread but back with the Mayo forum which is brilliant re: sharing knowledge and information. In response to “Off Prednisone but still Feeling Pain” I am in the exact same situation 16 months off GC’s. From the deep dive I’ve been doing, there are 3 categories of pain. Nociplastic pain is a type of chronic pain caused by changes in how the central nervous system processes signals. This pain describes what I believe we are experiencing. Unlike nociceptive pain from tissue damage or neuropathic pain from nerve injury, nociplastic pain occurs without clear signs of physical injury or lesions, featuring a hypersensitive nervous system that amplifies pain.
It could be a steroid withdrawal myalgia, temporary secondary adrenal insufficiency, or the unmasking of underlying osteoarthritis or fibromyalgia. Because high-dose steroids mask all types of joint and muscle discomfort, stopping them often reveals baseline wear-and-tear. I hope this clears up some of the mystery. I’m currently on LDN x one month but it can take up to 3 to kick in. My symptoms are a cookie cutter of what you’ve described abbeyc.
I’d be interested to hear how you’ve been managing a year plus along.
To all good health.