Anyone else have PMR with some serious sternum/rib cage pain?

On tapering, what have your docs told you to expect re pain? My understanding of what my doc said was, go back up to a dose where you feel no pain (really? Not any? At any time of the day?), then cut back by small increments (I had been doing 1 mg/month until I got down to below 5, then did 1/2 mg at a time down to 3, but at 2-1/2 the pain started increasing somewhat so now I'm back to 3 mg/day after 37 months).

To those of you who "toughed it out' to taper, so that worked for you? How? You stayed on the "some pain" dose and the pain backed off after a while?

I am not clear whether I should try to avoid pain or tolerate some. I can do either.

And I do use Advil now that I'mon low-dose pred, as I have other sources of pain that are inflammation-caused (and keep me from being able to work which I can't afford).

I'm reading your story and can't believe how your symptoms sound identical to mine. Crazy pain, started 3 years ago in November when I had Covid for the first time. Prednisone also gave me my life back, have been slowly decreasing (for the 3rd time 🙁 ) and still can't get completely off. Down to 3mg and the pain is worse again, although at 5mg I had virtually no pain. Been on Kevzara for 5 doses, but sadly doesn't seem to be helping. I also have the rib and sternum pain! Thought I was crazy. Also my collar bones ache so much.

Yes!! Leg pain flares up when I decrease pred too low. My Rheum also discounts this, but I know that it's all part of it. My left leg aches like I've got blood clots, but I had that checked and no clots.

Hi Kberly: sending you support and empathy for your pain. I think women (especially) tend to internalize our symptoms (think it's our fault), minimize them ("it's not that bad") or discount them (think we are crazy, etc.). Doesn't help if docs say or imply same (I am lucky; mine never have; they have always believed and supported me, thank goodness!).

You are not crazy! Glad (in a way) that my story helped you trust and have compassion for yourself. I am so grateful for a forum to share experiences. I had not heard of Kezvara and will have to look that up.

Thank you for sharing your knowledge.

Me, too - my rib pain (front and back) is ache, not stabbing pain. But also (when it was bad, before pred) started turning into muscle *spasms* that stopped me being able to (for ex.) turn over in bed, or even just lift my head in bed, without moving body parts very slowly, one at a time, with support from other, less-affected body parts. Like:

Support head with hands to turn it on bed (the range of motion of my neck gradually became quite restricted, so driving became treacherous).

Multi-move careful effort to turn over in bed:
- position one arm along torso
- roll onto that arm
- roll forward slightly to release arm behind back; move it back
- support torso and head with other arm to roll onto stomach
- repeat in reverse to get to lie on other side

Getting out of bed was similar. All about supporting torso into upright position using only arms while gradually moving legs down, b'cuz using torso muscles to sit up as usual would lead to spasm in back muscles. Once I got upright, legs could take over if I kept my torso straight and used arms to push off bed onto legs.

This gave me new insight into living with disability!

Thank goddess I had no pain in my legs, and little in my arms.

Eventually even that strategy failed and I couldn't get out of bed. Couldn't get to the phone and my husband, who was up, couldn't hear me yelling for help. *Terrifying.* Ended up throwing myself onto the floor in one wrenching, spasm-filled roll, landing on hands and knees and inching against bed as support into sitting position where I could use legs against bed to push myself into vertical position and walk, very gingerly, to get help. Still, was floored again by spasms going down stairs and collapsed, grabbing banister.

Lost it at that point - just broke down. Trajectory was just worse and worse. Will I end up in a wheelchair? Worse? Where does this end?

Took a muscle relaxant I had left over to tide me over.

Doc gave me pred the next day. Within HOURS I was regaining range of motion and pain leaving. MIRACLE.

I repeat (for the sake of any researchers who may read this) that I (like my mother, whose lower legs turned purple in addition to similar foot/ankle morning stiffness and who was diagnosed with sarcoidosis) had had morning aching stiffness in my feet and ankles for several years before the PMR symptoms appeared and spread over my body, and those lower limb symptoms DISAPPEARED when the rest of my body succumbed - at the very start of my PMR. As if it had been there for along time, woken up, and migrated.

[I will add that about 6 weeks before PMR, I gave myself strain injuries in my back, probably more than once (trying to be a hero). The pred has never totally taken away my back strain pain - I can't lean forward for too long. I still wonder whether strain from muscle overuse "woke something up" that had been there simce at least 2000 -- see below -- and caused it to move and replicate.]

I had also had not-really-diagnosed pain and stiffness in the front of my hips in the year 2000 for some months, which hurt most when getting in and out of my car (doc's best guess at the time: bursitis). That lasted only months and then disappeared. The foot/ankle pain started in the late 2010s and disappeared on May 2020, when my "PMR" began.

For the record/fwiw.

I'm sorry your rheum takes info about *more* pain and turns it into reasons to give you *fewer* meds. Seems kinda backwards to me.

Docs: doing stuff like this to your patients means they stop reporting data to you.

Interesting to me that a lot of us seem to get stuck at 3 mg. My rheum said it's possible the higher-dose pred (which I was on for many months, tapering by 1 mg/month until 5 mg, then slowing) caused the body to stop (or reduce) producing its own corticosteroids, and that 3-5 mg is close to a "biological dose," i.e. the amount our bodies make naturally. So I may need to be on it long-term.

Or maybe I already am
😉

I don't want side effects any more than the next person, but I try to relax and just be real about what is working and what isn't. 2.5 didn't work for me so I'm back up to 3 (still with a little ache here and there, later in the day, since my docs have all told me to take all my pred first thing in the am, never to spread it out).

I'm sorry your rheum discounts what sounds like pretty clear causality.

Has prednisone helped you at all? That sounds excruciating.

I started taking prednisone nearly 6 years ago for my rheumatological issues, the PMR, and mild RA, when I was diagnosed with Inststicial Lung Disease 5 years ago, the pulmonologist would have added prednisone. but I was already on it. I have been taking 5mg to 10mg as the need arises, we tried to lower the dosage to 2mg, but things did flare up, so I would say it must be helping. The Rheumatologist would like to add a biological like Certolizumab (taking me off Hydroxychloroquine) but he is concerned about as he puts it "rocking the boat".
I don't do well with many medications and every time we try to add something new I end up having issues. Hydroxychloroquine is not considered an immunosuppressant but it is the closest that I have been able to take without developing other health issues. So the short answer is YES. I think things would be much worse without the prednisone.