Sticky Blood-Hughes Syndrome Support
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Any one have pericarditous?

Been away from site for a few week - navigation really changed! After lots of support from this site, I got a consultation with heomotologist. She was dismissive of my symptoms saying they were stress not APS. At the same time my mums doctor went to a seminar by Dr.Hughes, and realised she wasn't getting the right support.

My husband and I agreed to take about 6 months activity working on stress reduction before trying anything else.

My mother has had pericarditous for a long time now, she is also extremely stressed. it will be end of August before all her results come in and she sees a specialist and she has been told not to fly.

We have therefore decided on a de-stress plan. Together with my dad, we will take a road trip in camper through France and Italy, then meet my husband for a couple of relaxing weeks in Greece. (Where I live, so we understand health system there)

So, to my question - I've arrived in UK to find my mum much tireder than I had expected, she has trouble getting her words out and is frustrated at lack of energy. She also seems quite swollen- especially legs/ankles. Her doctor approved our plan, but it cuts me up she seems too weak to enjoy it.

Has anyone else out there had pericarditous and can recommended anything to take the edge of symptoms? Even a slight help would make big psychological difference.

thanks for reading

5 Replies

I had autoimmune pericarditis back in February. I was put on steroids but it took me almost 3 months to fully recover. The difficulty is knowing what is causing your mothers pericarditis. For instance when mine was first discovered it was thought it was because of Behcets Syndrome. At the time the specialist would have changed my Plaquenil to Colchicine to help with that. So there are different reasons for treating it depending what is causing it in the first place. That makes suggesting things here difficult as we dont have details and are not Doctors.

The only thing I can say is know what is the underlying cause of the pericarditis and go from there. Stress alone will not cause it but of course it will help boost your immune system if you are not in a stressed state. Mindfulness meditation or related therapies are always helpful and will reduce the stress hormones. You can also try using a series of Probiotics to help modulate the immune system.

I do hope you manage to get away to France, it sounds a lovely trip, Im deeply jealous! Have a wonderful time! :-D


Thanks a lot. Unfortunately, the doctors haven't been able to find a cause. It is her second bout, and to be fair to hospital and gp, I do think they are trying so I wasn't after medical advice. She takes probiotics, and I believe we have a plan in place to reduce stress. What I'm hoping for here is little symptoms relieves - eg I tryed a cooling Rosemary leg rub, which seemed to help (unfortunately, it perked her up enough to spend too long on her feet the next day!)

How did you cope with fatigue? Is it better to push yourself to help build strength a little or totally relax and let body heal?

Again, thanks a lot.


I would say totally relax and allow the body to heal. To be honest I had little choice because it was impossible to push myself. Hopefully the holiday will boost your mum and the sea air s always a tonic.

I was reading another study for lupus yesterday that said that Plaquenil helped with pericarditis. If they can't find the cause is it possible your mum has a seronegative autoimmune condition like lupus or APS given your condition? Does she have other symptoms other than the pericarditis? It's just a thought because if this is the second time she has had it then there must be an underlying cause going on.


Thanks. Relax it is then! I'm totally sure some autoimmune - she seems a classic case (has never been able to recover from viruses well, recurring miscarriage- had me while taking heprin- ect.) Fortunately her doctor also agrees, has booked a specialist for when she gets back.

Luckily, we can keep each other company and relax and enjoy the scenery without my dad feeling the need to sit still ( he is diabetic and really needs to exerciser, but lets it slide when mum is sick) ,

Anyway, thanks for replying - I wanted to be sure rest was best (my mums retired nurse and likes to get people moving, possibly contributing to her last bout lasting for a year)

Hope you have a nice summer too.


Our local hospital is one of those that consitently crop up in the news as being the worst in the country.

I am sure I had pericarditis. I was in agony only eased by sitting in a chair leaning forward all night while on oxygen. The nurses on duty considered my agony insignificant and did not even make notes.

I eventually had to resort to self diagnosis and treatment. Because the NHS was so useless I now have the best doctor I have ever met ; Me !!


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