Pericarditis

[gray1997]

Hi, I’ve been suffering with pericarditis for nearly 7 weeks now and symptoms seem vary with each day- some days I feel fine and the next I’m back in pain again. I’ve been prescribed 2mg of colchicine a day and naproxen when necessary but I am running towards the end of the course. Does anyone else suffering with the condition know how typical long this last and if so is it normal to feel pains more now and again. Thanks

[Hidden]

Hi gray1997 have had pericarditus so the cardiac people say it is just waining now after getting covid in end March so a very long time prescribed colchicine and this helped but side effects not nice having some good days now so hang in there it will get better but it was very depressing now back at work I'm a mechanic and coping

[gray1997 in reply to Hidden]

Sorry to hear about your condition mate, I’m glad to hear you’ve got better though. Thank you for the reply it helps hearing from others suffering from this horrible virus

[Hidden]

Hi Gray, if you’ve not felt much improvement in 7wks, I’d say go back to your cardiologist/ prescribing Dr. I get impression (from Fb group) that continuing symptoms over a time frame like that can, if not treated, be linked with getting it recurrently, which is worth avoiding.

I’m on colchicine for 6months. Dr said 3-6m, assuming my tummy could stand it. Ive done 4m & am now weaning off it slowly, to hopefully avoid reaction to stopping. If you’re coming to end of course, that sounds too short to me, 3m min is what I’ve heard.

And are you resting enough? I know it’s hard, but advice is to keep heart rate under 100. For me that meant rethinking even things like walking upstairs. No exercise, no physical work for at least 3m, strolling only. I’m adding back some light exercise very slowly. Exertion defo made me feel worse, especially next 1 or 2 days after.

Heart heals very slowly, I think because it cannot fully ‘stop’ like a twisted ankle. So we have to reduce exertion so it has some level of ‘rest’. I think 3m till we start to feel reasonably better, guessing maybe 6m till heart has mostly healed, but only guessing.

Don’t leave it though, get colchicine long enough to prevent chronic - best of luck, 80% of people avoid the recurrent condition but it’s slow & frustrating.

[gray1997 in reply to Hidden]

Thank you for taking the time to reply it helps a lot hearing from others.

So I’m currently sat in A&E because it got quite severe, I’m not sure if it was like a flare up that will pass but I wanted to be safe by coming.

I think maybe I do need to be resting more I’ve been out walking a bit while still in some discomfort, I’m used to being out running everyday so I’m finding it hard to stay in bed everyday. But maybe I need to change that to get fully better.

Could I ask what dose do you take of colchicine each day? The side effects are quite tough so I’m not sure if to keep taking a higher dosage

[Hidden in reply to gray1997]

Know what you mean, I used to love day-long hill hikes but they’re on pause. That said, Ive luckily found a balance so I don’t have to stay in bed all the time - moving slow & occasional naps, for me. I think a bit of light movement is good for the body, it’s avoiding peaks that’s important I believe.

Defo don’t exercise whilst in discomfort, the pain is your body’s signal of something important. It usually isn’t life threatening but A&E a really good idea, ANY time the symptoms become strong, so they can check your heart isn’t constricted (tamponade is rare). Maybe you can persuade them to do an echo to check for fluid? And CRP blood test, maybe virus & auto immune blood tests too.

I’m on 2x colchicine daily, I think they’re 500 microgram each (often called mg but think that would be milligram - it’s whatever the typical tablet size is). I believe it’s 2x daily if body weight is over 70kg, but less if under that or other meds have an impact. I guess it’s a balance between side effects & taking enough to prevent continued inflammation. Ive been losing weight (deliberately) which coincided with worse side effects (although see brands, below) and am also weaning off, so I’m now on 8 a wk, down from 14 a wk. Cutting tablets in half with pill cutter is helping taper gently. Inflammation is a tricky beast

No I don’t like the side effects either, but I’ve kept at it. If it’s tummy troubles, I’ve found taking with a sizeable meal helps, especially if it’s got protein /dairy in it. And if naproxen is a NSAID, you should also have a tummy protector PPI like omeprazole.

I also prefer to take earlier in day, as they didn’t help my sleep

The pharmacy changed brands on me once (no fault of theirs) and the nerve pain in feet got worse, but on changing back to original brand, it has dropped again, so may be worth asking pharmacy for a brand change.

[Munich1961 in reply to Hidden]

Hi I have bad nerve Pain in my left foot. I have chronic pericarditis ...7 years now. Can you tell me which brand of colchicine you are taking. My left foot is burning and numb. Sometimes my hands freeze and cramp ...do you have this ?

[gray1997 in reply to Munich1961]

Hi, I’m currently taking morninngside colchicine. I’m not experiencing none of them side effects, I get slight headaches and pain in my stomach now and again but nothing like this. Maybe speak to your pharmacist or gp about it?

[Hidden in reply to gray1997]

That’s the brand that didn’t seem to suit me! We’re all different, perhaps! I do agree with your suggestion to speak to pharmacist about it. But tbh, my GP hasn’t typically been able to help much with specialist stuff like heart meds. He was even surprised a gout medication can be used for Peri, which I get, he’s a generalist, not specialist. So I’d say, if pharmacist can’t help, cardio Dr.

[Hidden in reply to Munich1961]

I don’t have numbness, I think maybe that’s worth getting checked out? I do get burning cramp / stabbing pain sensations, but have never lost feeling. Maybe worth getting circulation & other stuff checked out.

The brand that suits me OK is made by Wave Pharmaceuticals, I think, (may also have Ria Holdings written on leaflet). The one labelled Morningside, that I’ve had just once, coincided with worse neuropathy. It’s possible that was because I’m losing weight (heading below 70kg body weight guideline (for 1x or 2x daily), so maybe tablets had more effect & side effect). But I’ve continued losing weight back on my original tablets & had much less of the pain. So I think it’s the brand.

[Sunnie2day]

Hiya, Gray1997, welcome to the forum. Pericarditis is a wicked condition, hard to clear once it goes on longer than a few weeks and requires medical attention.

I'm a 60something year-old lady and have had recurrent pericarditis since the late 1990s (and a few other mild-ish heart conditions), can't take Colchicine (I get all the side effects including some not listed on the leaflet), and my latest acute flare lasted ten months (most of 2019 and part of 2020).

Have you had an echocardiogram to see if there is pericardial effusion? Have you been referred to the Rapid Access Chest Pain unit and then onto a cardiologist? Has anyone listened to your chest (left side heart area around to the side and back of your rib cage) for pericardial friction rub (tell-tale non-invasive way for the medics to determine if your pericarditis is acute or not)?

My experience with pericarditis is the chest pain, shortness of breath, fatigue (physical and mental), night cough and worse chest pain when lying down, and the 'good days-bad days' usually last 2-4 months with some chest pain remaining for months more, especially if I try to push myself too hard. My last acute flare was severe and I'm just now over a year on from onset feeling back to being able to push to regain fitness.

Things to do that help:

*Avoid heat and humidity (no hot tub, no sauna, no long hot shower) and mould.

*Hot water bottle against the painful area helps - a lot. Be sure to wrap the bottle in a towel to avoid burning yourself.

*Sleep with your upper body elevated (a wedge pillow works very well for this).

*Sleep on your right side to lessen body weight pressure on your pericardium and heart.

*Avoid exertion - walk a little bit each day in addition to normal household work (cooking, washing up) but nothing more strenuous. It's boring, it's annoying, it's frustrating - and it works to help you recover faster.

*If you are still under a GP care, ask to be referred to the RACP unit, ask for an echo, ask for a chest listen for pericardial friction rub.

Please update as you go on - you write you're at A&E now for the chest pain so hopefully your discharge notes will mention the RACP unit and the rest.

[gray1997 in reply to Sunnie2day]

Hi, thank you for taking your time to reply and giving advise, it’s much appreciated. I’m sorry to hear about your symptoms i hope you’re doing well yourself with this cruel disease.

So basically I went to a&e last night because I was in a lot of pain, they did the usual tests like blood pressure, temperature, ecg and they all calm back okay. Then he checked my heart to hear if there was any rubbing noise but there wasn’t and the chest X-ray didn’t show any pericardial effusion so the doctor sent me home because he couldn’t find much wrong with me.

I still find myself in pain though and can’t really speak as it makes me feel more pain in my chest so I’ve just been resting most of the day and hopefully the pain just settles soon.

[Sunnie2day in reply to gray1997]

No friction rub sound and no pericardial effusion is fabulous - it means your pericarditis is clearing and is probably no longer 'acute'.

Recovery is slow, sad to say, and you likely will feel some chest pain and fatigue for a few more months. Use the bullet list I put in my earlier reply to help ease things, and assist in recovery.

One morning you'll wake up and realise - 'Oh hey, no pain!' and slowly begin to rebuild fitness. But it will take a little time.

[Hidden]

PS the Facebook groups (pericarditis & uk pericarditis) tend to get a lot more posts than here, with lots of useful patient info & helpful replies.

[Mikamoo2]

Hi sorry to hear your still in pain. I've had Pericarditis 3 times now 18 month first time until I felt more back to myself but each time after recovery was quicker. I am currently having some investigations as am having some other heart issues at the moment unsure if linked but what I will say is dont push yourself too much just go with it it took me a long time to accept that but life became easier once I did. Hope you feel better soon x

[Hidden]

Hi gray1997

I'm fairly new to this condition. Severe pain first started in February. Pretty scary unknown time.

Finally diagnosed in May after 4 calls to 111 resulting in visits to A & E.

4th visit was admitted to Cardiology ward. Recurring pericarditis.

Prescribed Colchicine & ibubrofen. Fine on Colcechine but not Ibubrofen.

Fast tracked. Had Heart MRI scan. Saw Cardiologist. Now on Prednisolone 30mg daily for 4 weeks then slow withdrawal. Awaiting ct heart and chest scan. ( also contracted pnuemonia twice) during this period. Queried Covid pnuemonia?

Referral to rheumatology to check out possibly of auto immune disease.

Best advice. As in all previous replies. Take it easy. Rest. Short walks when you feel up to it.

After 5 months I have noticed a pattern

On going pain at some level daily then a 2 - 3 day period over which pain gradually worsens. Severe pain in chest, throat, back and on breathing. These are my symptoms. Everyone different.

If pain severe. Ring 111. Don't hesitate.

Hope you have speedy recovery.

[Dockdog in reply to Hidden]

Hello Jac19, Sorry to learn you are going through the mill with pericarditis and I was alerted to your bouts of pneumonia. I first developed pericarditis some years ago and gradually my health went downhill. Every winter I had pneumonia and after some time it was clear I had developed serious pleural effusion in the right lung, no one felt there was a link to the pericarditis! So the experts thought I might have either Asbestosis, Cancer or other serious conditions of the lung and investigative op at Guys showed none of these frightening issues but the glued the lung to the pleura with talc to eliminate the effusion! Great, it just shifted it to the left lung! meantime the frequent pneumonia continued. Finally the light bulb moment when they believed it was actually caused by the pericardium. By then I went private to get a decent physician to examine me, he felt he knew what it was and I had an MRI scan, then introduced me to a colleague who was trained at the Royal Brompton, he identified it with most likely constriction on the heart by the pericardium and managed to get me a very special MRI scan at the Brompton and an appointment with his former head of cardiology. It was confirmed as constrictive pericarditis and treated with surgery ultimately to remove the pericardium. After this I thought I was out of the woods, sadly not so and the several years of pneumonia has left me with fibrosis of both lungs and terribly vulnerable to chest infections. Further the excess pressure on the portal vein due to the constriction has given me Non Alcohol Cirrhosis of the liver. So my urgent advice to you is please get the cause of your pneumonia checked with any linkage with the pericarditis. This is a vile condition and really to be avoided; sadly so many GP'S and Specialists lack any real experience about the problems of pericarditis which is really worrying. Don't accept anything on face value with regard to this condition and persist to get good second opinions.

Good luck and stay safe!

[Hidden in reply to Dockdog]

Hi Dockdog. Wow!! what a horrendous time you've had. I have wondered if the Pericarditis caused the pnuemonia as I had no previous symptoms, no chest infections or pneumonia previously. Nothing to indicate any chest problems.

As you say there doesnt seem to be a lot of knowledge around regarding Pericarditis, causes or symptoms.

It is the long term that worries me.

It is a question on my list for my next appointment. I will pursue it.

Hope your health has settled. Take care.

[Munich1961]

It usually gets better in two to three weeks but completely Beyeler can take up to 6 months. I find it depends on how severe the flare up is ...

[Sunnie2day]

Update, Gray1997, any better?

[gray1997 in reply to Sunnie2day]

Hi, sorry am I only getting back now been busy the past few days. I’m doing a lot better yes, the pain has dropped a lot and feel comfortable sleeping at night. I’ve got to see my cardiologist in a few week, hoping it’ll be gone by then fingers crossed. Hope you’re doing well yourself

[Sunnie2day in reply to gray1997]

That's great to hear - feeling better enough to be busy is a clear indication of recovery. Any tips on how you've done it?

[gray1997 in reply to Sunnie2day]

I’ve just been staying in the house and not walking as much. I’ve also been taking turmeric with other vitamins because I’ve heard it can help with inflammation so it’s worth taking