Anyone had these treatments for heart inflammatio... - LUPUS UK

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Anyone had these treatments for heart inflammation and fluid on heart?

Lucy74 profile image
7 Replies

At the moment, I have pericarditis and fluid in the sac around my heart. The doc has suggested a couple of options. Firstly, I could take anti-inflammatories such as Naproxen. However, my digestion is very very senstive, so the likelihood is that it will upset my tummy, so he's said I could take something like Omeprazole to protect my tummy. The other option is an intramuscular steriod injection, probably Kenalog.

Has anyone experience of this condition and treatments? And does anyone know if the injection is straight into your heart?! I've had steriod injections before for bursitis in my hip and it was straight into my hip, so I've just assumed it would be straight into my heart which sounds a bit serious! Or is it just into your arm or something?

Also, had anyone found anything more alternative that has helped the heart stuff specifically? I'm not keen on meds and will only take when absolutely necessary.

Finally, does anyone know if this inflammation causes any lasting damage to the heart? If it doens't then I wonder if I can just put up with it until it goes away (hopefully), but if it does, then I really should do something about it pronto.

It's just a letter I received from the doc, following the tests, so I've not spoken with him about it, hence all the questions!

Thank you all.

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Lucy74
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7 Replies
Shann07 profile image
Shann07

Hiya I can only assume your pericarditis is very mild given the doc hasnt even contacted you in person i find that shocking. I had this before i was in extreme pain like a heart attack & was really short of breath! I couldnt deep breathe at all. I was admitted to hospital where they planned to drain the fluid via needle straight into heart area but scans showed fluid was behind heart & consultant said it was too risky to try that way! I then had iv steroids tons of this & stayed in hospital for a couple of weeks! Maybe mine was severe or something. It has caused me lots of lasting symptoms chest pain, breathlessness, still find it hard to yawn! Ive git lung scarring from that attack & my chest area is chronically tight & smothered. I would advise you to speak with your doc asap & start the most effective treatment because in my case it caused devastating damage that will never repair :(

Lucy74 profile image
Lucy74

Oh my word, that sounds very bad indeed! I think mine is mild - the letter says it is not of any immediate concern, and that I should go to my GP to talk about the treatment options, but phone the hospital if I want to see the Rheumy about it, or if it persists or gets worse when we might need to look at long term treatment.

The pain is constant, but not crippling, although sometimes I get stabbing pain as well which is really sore. Breathlessness too, and feeling like deep breathing is not possible. Sometimes just walking from one room to the other in my flat is enough to make me catch my breath, and I am generally very low on energy atm. Some days I am OK, other days it is quite bad. I am having to learn to slow down. But it is pretty sore, I'd like it to go away, and of course I want to avoid lasting damage so guess I better get an appt with the GP next week :-(

Lucy74 profile image
Lucy74

Sophie - the steriod treatment you got - you said it was IV. Did you ever get a steriod injection for it, and if so, where did the injection go?

Purpletop profile image
Purpletop

Steroids are the best for controlling the inflammation, only it can lead to recurrent episodes, apparently. Colchicine is an anti-inflammatory used for pericarditis - apparently it doesn't lead to recurrent episodes as much as the steroids. I initially took ibuprofen for about 8 weeks, then got fed up with the lack of progress and asked the GP for colchicine which improved the symptoms to an extent. But in the end I got referred to my rheumatologist (who also diagnosed the lupus) who put me on steroids and the main symptoms went away pretty soon after that (although residual symptoms like breathlessness persisted for 2-3 months after that).

My cardiologist checked (echocardiogram and ultrasound) whether the pericarditis has scarred the heart but it didn't. However, even now, 2 years afterwards and I still have fluid around the heart (although apparently not a lot). The cardiologist says it will remain there from now on and it may continue to accumulate, which is why he's checking it each year. I'm due to see him this week, as it happens, I'm hoping the fluid hasn't increased. MRI is the best for measuring the volume of fluid.

For me the steroids did the trick - I took them orally for about 3 months but not at high dosage. People seem to think that pericarditis is not serious but as Lucy said, it can get critical pretty quickly, with significant after effects, so I'd do anything I could to avoid that, including taking steroids.

misty14 profile image
misty14

Hi Lucy74

I'm recovering from a flare of Pericarditis at the moment and find it a tough condition to cope with as the pain can be so strong. I've had problems for 3-4 years now trying to find the right treatment for it. I've had my anti- inflammatory changed to Celebrex which has been better for the pain and is kinder on your tum. Omeprazole is a good drug, I've taken it for years with no problems!. I find steroids have been the best treatment for Pericarditis and I'm improving now on 20 mg daily, they were doubled. I would think your steroid injection is not directly into your chest but into your body as it's an intramuscular one. I'm going to the Pain Clinic in a weeks time to talk about having a nerve block injection in to my chest which does sound seriously scary! So it shows what can be done!. This has been recommended by my Cardiologists after being in hospital for 4 nights recently. I don't have fluid problem but am also having to take morphine for the pain.!. I hope I've helped?. Good luck, hope it improves for youX

fishlet profile image
fishlet

I'm sorry to hear about this. Even mild pericarditis is not fun! Like some others on this thread, I have found steroids to be the most effective treatment. However, I have also found Naproxen helpful. If you take it with milk or a bit of food and also take a medication to protect your digestion, you shouldn't suffer too much upset.

Lucy74 profile image
Lucy74

Thanks very much everyone, this is REALLY helpful. xx

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