Recurring Pericarditis

[Jarradw]

Any advice would help massively. Long story short I had a stressful year 2023 followed by a case of missed and undiagnosed Giardia for 3-4 months. During this time I developed these chest pains which I was first told was acid reflux. (Had suffered heartburn on and off for years so knew that wasn’t the case).

So finally got rid of the infection but chest pains stayed and worsened with physical exercise. Doctors found no inflammation on Ultrasound but said it is probable that it is Pericarditis.

6/7 months later I am on my 3rd ‘flare up’ finishing my course of colchicine and painkillers. I just wanted to know if there are others out there with similar stories and if I would get back to my active self. I am 26 yo and have always been active. The waiting and resting and not knowing when I will be back to normal is the most frustrating part. Any advice from anyone, especially close to my age would be much appreciated

[Identiy]

Are your doctors definitely sure that

1. you have pericarditis (vs myocarditis) and

2 the giardia caused it?

[Jarradw in reply to Identiy]

Thanks for your response..

Doctors aren’t sure of either, am waiting to see cardiologist via NHS, waiting times are ludicrous.

They believe the Giardia infection has caused the inflammatory response, yes.

Doctors of the NHS have not been helpful in this time.

[Identiy in reply to Jarradw]

You need a specialist cardiologist opinion which will include definitive tests and an accurate diagnosis

[Schora1]

Hi, sorry to hear you have peri. I too suffer recurrent peri and have done so now for 18yrs. Colchicine is the best treatment but rest is key to prevent further flares and help you heal. Athletes I am told by a pericarditis/cardiology consultant are told to take three months rest.

Please rest and be patient. Have you been referred to a rheumatologist to see if there are any underlying causes?

You could also join the UK, EIRE & CHANNEL ISLANDS pericarditis group where there are lots of other sufferers and support.

Please feel free to ask me any further questions. I’ll try and help if I can.

Peri affects all ages and doesn’t discriminate on the peri group there are parents of young children who suffer peri. Treatment is always the same generally speaking.

[Jarradw in reply to Schora1]

Thank you for your response.

I’m sorry to hear what you’ve experienced for so long. I guess I’m kind of worried that I will have to put up with flare ups for the rest of my life? Can I make a full recovery with this medication?

[Schora1 in reply to Jarradw]

Hi, I have an underlying autoimmune disease hence it’s never gone away.

Most people do make a full recovery but please rest it really is key. Colchicine and anti inflammatory drugs are usual treatment but make sure the doctors prescribe a PPI to protect your stomach.

It’s a dreadful and debilitating condition and children younger than 10 have been reported with the condition. It took several incorrect diagnoses and treatments for doctors to finally diagnose me which I believe has also hindered my chances at recovery in the past.

It’s frustrating when in flare but I’ve learned as have many others to be patient and rest.

[Jarradw in reply to Schora1]

I really appreciate your help. When will I know when I can do more physical exercise? The last 2 flare ups have come on literally just after walking. And gave myself plenty of time to rest in between and was feeling better. A week after a longer/tougher walk and I feel like I am back to square 1.

[Schora1 in reply to Jarradw]

Hi, you need to build up gradually. It is very frustrating and feels like one step forward and 10 back. I have had 6 years once between flares but my problem as my cardiologist tells me is I don’t rest when I should. When doing anything if you get even the slightest twinge it’s too much so stop and rest again. Just try a little bit more each time rather than taking a big leap forward. It is very gradual I’m afraid. I do empathise and understand your frustration too. Have you had an echo or better still cardiac MRI? With the colchicine you can take ibuprofen as well. I have celecoxib and oramorph when things get really tough and the colchicine together with ibuprofen isn’t helping but they have to be prescribed by a doctor.