Peri flare

[Schora1]

Good morning all. How are we today?

Does anyone on here suffer from chronic recurrent pericarditis and prescribed something other than the standard medication?

I am currently flaring again and have been now for 10 days.

I am taking 1x0.5 colchicine a day along with 40mg Rabeprazole twice daily.

I also take paracetamol.

I cannot take more colchicine due to intolerance and I have also got Barrett's oesophagus.

[Sunnie2day]

Hiya, Schora1, I'm sorry to hear your recurrent pericarditis is in an acute flare. Frustrating - and painful, you have my completely sympathetic empathy!

I can't take Colchicine at all so I soldier through acute flares with no medication, just environmental measures like avoiding mould-heat-humidity, low sodium-salt intake, and no heavy work (as you know, an acute flare episode is not the time to start a big DIY project). I sleep with my upper body elevated.

I've done a lot of research on recurrent pericarditis and haven't found an alternative to Colchicine, sadly - I would LOVE to have a pericardial specialist say 'Take these, you'll be fine in a week'. Hopefully someone will be along soon with better info (I hope, I hope, I hope!).

[Schora1 in reply to Sunnie2day]

Hi Sunnie2day, so frustrating isn’t it. I have had to retire through I’ll health because of it. I’ve just been asked to do some genetic tests and have sent them back to Helen Lacmann’s team at the royal free in London.

It is believed I have some autoimmune disease but not sure what so I am due to see her in October, once these tests have been processed.

I’m hoping then to be able to try more types of drugs including Anakinra but in the meantime I’m struggling.

I sleep sat up most of the time now as I have a few effusions too, so makes me breathless most of the time.

Have you tried Anakinra or any other drugs? X

[Sunnie2day in reply to Schora1]

I haven't tried anything but the Colchicine and my reaction to it was so extreme (I mean really extreme - all the listed side effects including changing colour - I went grey skinned rather than green) the general feeling is 'Let's not', lol!

My recurrent pericarditis is a 'gift' left by Dengue Fever in 1995 but I have read Lupus might be an autoimmune condition that predisposes people to Pericarditis, also having rheumatoid arthritis. Autoimmune was looked at when they decided I had recurrent (I also have Rheumatic Heart Syndrome and one of the gifts of that is not only heart valve damage but joint damage that mimics rheumatoid arthritis) but that was ruled out in my case and Dengue took the full blame.

Do you know when you might hear something back on the autoimmune testing? When you do, please update. Until then, I hurt for you and hope your acute flare goes away quickly!