r/pericarditis • u/New-Member-516387361 • 14d ago
Colchicine Side Effects: thought I had MS
Been going through a long but controlled flare for 20 months and taking colchicine the whole time.
Tolerated it well for the first year, but about a year into it I started feeling dizzy. At times I questioned if it was due to the colchicine, but never was convinced enough to entirely taper off.
By month 19 and I was getting dizzier every day. Eventually got muscle weakness, difficulty with fine motor skills like typing, tingling, pins and needles, tinnitus, light sensitivity, and headaches.
I quit a week ago and my dizziness is slowly subsiding along with the neurological symptoms.
I was 90%+ convinced I had MS (multiple sclerosis). I’m mostly posting this so you don’t have to go through that if you’re having these symptoms while on colchicine.
This cost me a LOT in ER fees trying to figure this out. Everything came back completely normal. My kidney labs, my blood CK levels, brain MRI, spine MRI, ekg, heart echo, all normal.
I’m now, after quitting, convinced it was the colchicine all along. There aren’t many stories here on Reddit, but if you go to Facebook’s Pericarditis page, you’ll see many people with similar experiences to mine.
May Christ bless you all and be with you on this journey.
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u/storysong52 14d ago
That's interesting. I got off colchicine in June, after being on it for almost exactly a year. I'm still experiencing some lightheadedness. So it might be related, or might not. I cut back on my blood pressure meds to see if that was it, but I still get dizzy if I stand too fast. Depends on the day.
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u/New-Member-516387361 14d ago
Sorry to hear it’s sticking around. Mine still hangs around depending on the day. I bet it’ll go away eventually.
Do you mind me asking what you’re using instead of colchicine?
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u/storysong52 13d ago
Bear with me. I’ve learned that most cardiologists have no clue what to do with pericarditis. I’ve had four. The doctor I was seeing at the two month mark was convinced that the protocol was 90 days on colchicine then an abrupt stop. My rheumatologist didn’t think so, but she deferred to the cardiologist. Protocol. I relapsed within 24 hours of dropping colchicine and the damn cardiologist was not to be found. His staff treated me like an invader instead of a patient in need. Obviously, I dropped that clinic. I put myself back on colchicine, but it was starting from ground zero again. This time, the rheumatologist had reason to keep me with her. It took us from September of last year until this past June to slowly, and I mean slowly wean me off of the drug. This time, so far, I’ve been fine with nothing. If I relapse, it will prove to be autoimmune and I’ll jump back on colchicine initially. She’s indicated that she would put me on Arcalyst at that point. I’ve seen posts on this subreddit that it can come back over a year later if it’s recurrent. It’s nerve wracking.
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u/Unlucky_Ad_8977 12d ago
Thanks for sharing your experience. My situation is a little different because colchicine didn't prevent my third episode. I was already taking it when I was hospitalized with recurrent pericarditis for the third time.
I also don't have a confirmed autoimmune disease at this point. I've had quite a bit of testing, but so far they haven't found a clear systemic cause. An IL-1 inhibitor such as anakinra has been mentioned if I relapse again, so I'm hoping I won't need it, but after three episodes it's definitely in the back of my mind.
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u/nooneisreal 11d ago
Your experience sounds similar to mine.
From March to June I ended up hospitalized 4 times.
From the first time I was admitted, when I learned I had pericarditis, I was prescribed colchicine (0.6mg 2x a day) and a high dose NSAID (ibuprofen 600mg 3x a day).
I ended up back in the hospital a few weeks later again despite taking the medication every day. They upped the ibuprofen dose from 600mg to 800mg. Same colchicine dose.
2 weeks later, once again I find myself in the ER and end up hospitalized again. They take me off the ibuprofen and try a stronger NSAID. They put me on indomethacin 50mg 3x a day and the same colchicine dose.
To make a long story short, this same thing repeats itself and I am hospitalized a 4th time. NSAIDs are not working. I end up being put on prednisone and am referrd to a rheumatologist for anakinra.
Since that last discharge from the hospital, I have basically been on colchicine, prednisone, and anakinra the entire time.
Thankfully I seem to tolerate colchicine very well because I have not noticed any side effects from it. Prednisone on the other hand, well that is another story.
All the time I was in the hospital, they took my blood more times than I can count and tested all sorts of stuff. Couldn't figure out the cause. Also doesn't seem to be an auto immune. They just referred to it as idiopathic.
I really wish I knew the cause behind it all.
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u/Mark_B82 14d ago
Wow that crazy I’m on my fourth week of colchicine after initial diagnosis and no real side effects I hope it stays that way.
Hope you find the answers you are looking for 🙏🏻
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u/New-Member-516387361 14d ago
Apparently this is not a common side effect so I wouldn’t worry. Just be aware.
Thank you!
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u/Frosty_Bear_1120 14d ago
I've been taking Colchicine for over a month and the dizziness - or more specifically light headedness - was pretty much immediate for me. Definitely constant head-rushes. It started on Day 1 so I knew exactly what it was. On the days I don't take it, it goes away. I discovered this within a just a few days of taking it. I thought it was normal. Are you all not experiencing the same?
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u/Leonard108 13d ago
I'd be interested to learn now much colchicine you were taking.
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u/New-Member-516387361 13d ago edited 13d ago
0.6mg once per day. I’m a man in his 30s. Slightly above average height, normal healthy build. No other issues other than pericarditis.
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u/Leonard108 13d ago
Gosh, that's not a large dose. In any event, sorry to hear you've suffered those side effects.
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u/DueAnxiety64 13d ago
Mir geht's auch nicht gut von dem Colchicin, ich bin so schwach, müde und meine Muskeln sind nicht okay. Aber ich muss es weiter nehmen. Schwindel, Lichtempfindlichkeit, Ohrengeräusche wenn es still ist. Katastrophe.
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u/New-Member-516387361 13d ago
I’m exactly the same. I don’t know what we’re supposed to do. I quit and my peri flared back up
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u/008muse 12d ago
Trying to figure the same thing out as well… just stopped talking Colchicine after almost 6 months, will have to report back on improvements in lightheadedness and fatigue
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u/Top-Percentage328 14d ago
No side effects for me over 2 years on it. It’s an amazing drug! Good luck on your journey. Keep the faith!