myocarditis - stopping colchicine suddenly causes relapse

[clearbrian]

Hi

My friends had myocarditis since may 2019. Finally diagnosed properly after many trips to A&E.

He was getting better but two bad relapses but has two weird issues:

Ok-ish during the day but at night or in any resting state it can flair back up. Sudden chest pains. Painful thumps in his chest.

It's very strange Ive even seen him asleep then his heart even kicks and wakes him up.

Because sleep is affected its hampering his recovery.

We've told the cardiologist this and hes not been very helpful. Says just irregular heart beat. After a few months He told him to stop taking the colchicine. My friend stopped immediately and then slowly over a week felt worse till a week later ended up in A&E with severe chest pains.

Went back on colchicine.

This week the cardiologist sent letter to GP and again said irregular heart beat and to stop taking colchicine... and again a week later sudden chest pains and off to A&E again last saturday.

The A&E doctor said he may be getting used to colchicine and that stopping suddenly may be bad idea. Any pain may be exaggerated as the body more sensitive to it. He suggested cutting down slowly.

Been to A&E multiple times - every time its ecg, morphine, sent home after Troponin check to see if it's a heart attack. Thankfully never.

Anyone else get this from suddenly stopping colchicine? and has anyone weaned themselves off it?

Anyone else finding issues with pain only kicking while sleeping or at rest.

He was very fit before getting this but injured his arm so stopped exercising.

He also had chemo as a teenager so his immune system was always weak. He caught every cold going.

cheers in advance

[Sunnie2day]

I have recurrent pericarditis with the cardiologist recently telling me he couldn't rule out a previous bout with myopericarditis.

Colchicine is considered the medication of choice for myocarditis (along with antibiotics depending on the cause of the condition), pericarditis and myopericarditis - it's a gout medication that also has good results for the three conditions. Length of prescribed use can vary from a short course (1-3 weeks) to months (6+).

But it's not always tolerated well by patients (I can't take it, I get every side effect listed and it's not pleasant!), and for some who can tolerate it well, it does cause 'withdrawal' or 'relapse' if stopped suddenly - it sounds as though your friend would have been better served by tapered weaning off. Weaning is usually supervised by a medic (cardiac nurse, cardiologist, or GP) and can sometimes take longer than the originally prescribed course.

Your friend should talk with his medical team, telling them if there were side effects or if improvement seen during the course (meaning he can tolerate the medication well), and if the medic wants it stopped, your friend should ask for medically supervised weaning rather than 'cold turkey' stopping.

Colchicine does have some 'contraindications' and advisories, and the package leaflet should be read, re-read, and kept on the fridge or pinboard for repeated reference.

ETA: pericarditis is well known to seem worse when lying down and can wake the sleeper from a sound sleep. I don't know if myocarditis can do the same but considering your friend is reporting the problem, the medics should be advised of it happening.

[clearbrian in reply to Sunnie2day]

Cheers for that.

Well the cardiologist is emailed with every event. Though he's not a very good listener. We have emailed him again saying he ended up in A&E again after taking his advice to stop. If he says stop fully again I'll be sending a more formal letter of complaint and asking him or his superior for a second opinion.

[Oosi in reply to clearbrian]

Hi

I was diagnosed with Myorcarditis in December 2018. Unfortunately Cardiologists are very dismissive once you are diagnosed with Myorcarditis and there isnt any significant damage to the heart muscle.

In my case after many trips to A&E with chest pains and irregular heartbeat I stopped going to the hospital as they basically checked troponin was ok and discharged me with ibuprofen. I just learned to deal with it. The episodes are no longer frequent but still feel pain/discomfort from time to time.

I was also on colchicine for 3 months. I was taken off it without and weaning and had no issues.

Your friend should look at the positives. If there was any significant impact to heart function, the cardiologist will pay more attention.

Its been more than a year for me now since diagnosis and i am now able to do moderate exercise. (I used to be fairly fit).

I hope your friend finds this useful.

Good luck

[clearbrian in reply to Oosi]

Doc replied after we said he’d been in a&e again. moved appointment to Feb so at least something happening.