pericarditis

[Golf1985]

hello everybody after surgery in October,blood clot on the lung now I have pericarditis feels like never ending for me,another 3 days in hospital after junior doctors said it wasn’t and turned me away 2 weeks ago ,I knew it was so asked for cardio to confirmed with ecg changes and rub,just started colchicine the pain is horrific constantly can I ask anybody on here how long did the meds take to work,thanks again

[BeKind28-]

Hello

I have not taken these meds but I just wanted to say as I am sure those that have will reply when they see your post that I am so sorry what you are going through and sometimes which I do know that feeling it does feel like it is one thing after another but it will get better and those tablets will start to work so keep going and hanging on to that thought they say that this to shall pass

Happy New Year and may it be a good one x

[fishonabike]

i am sorry to hear that you are going through this - i have no personal experience of this and hope that you get some helpful responses

in the longer term, may i suggest that you resume exercise and activity with great caution when you are recovered - many docotors are not aware that recovery is slow and do not give helpful advice - after the dreaded virus hit us there was concern (among their employers) for young professional athletes who had had Myocarditis as a result of the infection, so research was funded and carried out to find out how to support their return to excercise (and money earning for their teams) - a very helpful report with guidance was published in the BMJ, if you search for "BMJ, returning to exercise after (insert dreaded c word) myocarditis" it should appear. Or message me and i will send more info

i hope you get some relief soon and wish you a good recovery, it may be slow so get some comfy slippers and lots of couch based interests!

[Scho1]

Hi, I’ve been on colchicine, oramorph and celecoxib for chronic recurrent pericarditis since 2018, having suffered with peri and effusions on and off since 2006.

Rest is key along with colchicine and an PPi to protect the stomach and most recover within a couple of months.

You may like to join the UK pericarditis group for further support and info.

[Golf1985 in reply to Scho1]

Thankyou for the reply did it take long for the meds to help the pain,was your pain just breathing in or constant as mint is constant sometimes or with the heartbeat,don’t get much relief leaning forward,did yours cause ecg changes and the rub,thanks for getting back to me

[Scho1 in reply to Golf1985]

Hi, I can empathise with you as relief is not always instant. If I get to the point my pain meds don’t work I have to visit A&E as per my cardiologists instructions. My pain can be constant and the advice re heartbeat is to keep it below 100bpm. I’ve rarely had ecg changes and not all cardiologists can detect the rub sound. In bed I sleep with two firm pillows and at my worst 3. A ‘V’ pillow often helps both sitting and in bed. I don’t always get relief by leaning forward either. There is a team of top senior medics both here and in Europe and the USA who are currently part of a working party gathering research on patients with peri and they do seminars every so often on the UKperi group. Their research it is hoped will educate and develop knowledge and understanding for those working within the medical profession.

Do you have a cardiologist, Rheumatologist or immunologist looking after you?

I have been on colchicine now for several years with regular blood monitoring and many others are too. There are some medications available in Europe and the rest of the world that NICE as yet haven’t authorised here in the UK but hopefully that will change soon.

[Golf1985 in reply to Scho1]

Thankyou for reply,yeah under a cardio but not seen him since surgery,was meant to see him in few days time but was cancelled due to strikes now it’s April🤣about rite in the Uk,but I can see him private if needed as I have done for the last 13 years as I have been private self funding,yeah I have to really put my head between my knees to get relief not just leaning forward,only been on colchicine 4th day so see if starts helping,heartrate med seems to be working better so heart rate below 100 at rest,does your heart feel weird if you lie on either side like it irritates it gives forced beats,just hoping it’s after effect of surgery and it goes and then it’s done,thanks again

[Scho1 in reply to Golf1985]

Hi, sometimes I find when lying on my left side I feel and hear my heartbeat more and it also speeds up, often to 160+bpm with irregular beats.

[Golf1985 in reply to Scho1]

Can I ask did you get temp spikes and feeling hot in waves

[Scho1 in reply to Golf1985]

Yes I have and do. Peri is quite debilitating.

[Golf1985 in reply to Scho1]

Did you take anything for the temp or just let it ride out seems to come then go not sweating just hot and temp up to 38

[Scho1 in reply to Golf1985]

I usually ride it out but you can take paracetamol.

[Golf1985 in reply to Scho1]

Thankyou for reply so fast,I was taking paracetamol but I dint want to all the time on top of the other meds,just weird makes your head feel hot and headache

[Scho1 in reply to Golf1985]

It is very weird and makes you feel quite unwell sometimes.

I know what you mean about meds though. I have to be careful as sometimes my meds adversely affect my liver and kidneys. I have regular bloods because of this.

[Golf1985 in reply to Scho1]

Hi,can I ask how long after pain eased did you start walking and things,doesn’t help I caught Covid why I was in hospital for 2 days getting peri diagnosis and that started on top 3 days later, just my luck at the moment so I’ve been fighting that all week also

[HawthornHeart in reply to Scho1]

Hi Schora1, do you have a link to the Pericarditis UK group, please? I have had a look but haven't been able to find anything.

Thanks

[Scho1 in reply to HawthornHeart]

Hi, UK, EIRE & CHANNEL ISLANDS PERICARDITIS GROUP

If you have any difficulty still let me know and I’ll try and add you to the group once I’m home.

[OpenMind1]

So sorry to hear your story. I've been on colchicine for ten months before stopping a couple of months ago. It kicked in pretty quickly in my case and i was aware of missing any doses so i think it's effective. I kept taking it on a repeat prescription in the absence of guidance but have recently be told by a consultant that i shouldn't have been on it so long so i suggest if you're still struggling after a few months push for advice about ongoing medication.

Wishing you all the very best.

[Golf1985 in reply to OpenMind1]

Thankyou for the reply did it take long for the meds to help the pain,was your pain just breathing in or constant as mint is constant sometimes or with the heartbeat,don’t get much relief leaning forward,did yours cause ecg changes and the rub,thanks for getting back to me

[OpenMind1 in reply to Golf1985]

Hi... my pain sounds very similar to yours, constant and sometimes with my heart beat, worse when i lay down... my pain's not awful just an ongoing reminder that my heart's not happy so I really try to not upset it (despite being a formally very active runner). I had initial ecg changes, but not for a long time, no rub but ongoing elevated troponin and some signs of mild fibrosis on an mri.

Take it as easy as you can... this is certainly teaching me to listen to my body and be patient.. not at all easy though.

[Golf1985 in reply to OpenMind1]

Yeah I’m in real pain at the moment but only 3 day on the med,I struggle with heart rate and on medication for that so that doesn’t help,as me going to the toilet it the same rate as somebody going for a run,I went up the other week to a&e had borderline trop but they did nothing even tho I said it’s peri,but this time had changes and he heard the rub,even struggle swallowing, but the pressure is bad sometimes even when not breathing in,then gets worse when do that,I’ve been suffering 13 years with pains that’s what led to surgery but this is bad as it’s constant

[OpenMind1 in reply to Golf1985]

That all sounds really awful. I really hope the colchicine works quickly for you. Might be worth saying my key diagnosis is myocarditis with signs of pericarditis. Keep pushing for care... I've had very little help since my hospital admissions and it's scary stuff this. Take care.

[Golf1985 in reply to OpenMind1]

Yeah mine is more peri from the pain, also the type of surgery I had the pericardium was cut to get access,but at the moment the pain in horrific just praying gets better🙏🏻

[Golf1985 in reply to OpenMind1]

Did you get leg and muscle pains from the med by any chance

[OpenMind1 in reply to Golf1985]

No I didn't. Worth checking out though, to rule out anything worrying. I've found the BHF nurses really helpful when I've called them, worried about something.

[Golf1985 in reply to OpenMind1]

Yeah I’ve been told 3 months to stay on it but will try get some guidance on this as also on ipixaban for the blood clot and thats between 3-6 months but no body wants to give me a date to stop taking this also so hopefully stopping both around the same time,he said it may effect stomach movements but up to yet it’s fine

[Jedx]

hi Golf1985 l had pericarditis after my cabg and was put on colchicine for 6weeks it gave me chronic diarrhoea nasty stuff then l had an episode of atrial fibrillation, luckily this happened when l was still in hospital. Haven’t had any a/f since. I really feel for you it really sucks when it’s one thing after another, Just hang in there as l kept having to say to myself “this will take as long as it’s going to take”. We are all unique yet some things remain the same. God speed your recovery.

[Golf1985 in reply to Jedx]

Hello hope your well,did you complete the coarse then and did it stop the peri pains ,yeah I can feel the stomach starting already so that’s incoming,it’s just the leg muscle pain I’m worried as rare side effect,as can cause muscle waiste and kidney trouble like statins do,just praying as need a break from it🙏🏻

[Jedx in reply to Golf1985]

Hi Golf 1985,

Well l managed to persevere to finish the 6 weeks. Fortunately l didn’t notice much pain from pericarditis only little nerve zaps around my scar. My left ankle really hurt at the time but l have all sorts of stuff going on in there anyway. I am lucky l guess. Just keep healing it does get better

[MustyK]

Sorry to hear about it. Indeed the pericarditis pain is atrocious. Mine was viral and I suspect that yours is as well. My first attack was when I was about 40~41. It does mimic a heart attack. It took several months; and a visit to A&E with suspected heart attack before it was eventually diagnosed.

My cardiologist initially prescribed Naproxen (anti-inflammatory) which did not nothing. He also said that was the only thing that I could take. The pain can last a few days and, at its peak a couple of hours during these days. Whilst in the US ( in my first year of the illness), a chemist suggested something similar to Ibuleve (strong ibuprofen with something else, I cannot remember). It was the only medicine that relieved the pain. Needless to say, I stocked up and every time I was in the USA, I got some more

My cardiologist also told me that the cause of it was unknown but it was common with people who did a lot of travelling (which I used to do, flying by the way). He also said that virus can take 18 to 24 months "to burn itself out". Initially I was having attacks every two months for about a year. Then it dropped to 3months, 4 months then 6 months. My last attack was 5 years after the 1st one.

My understanding in terms of meds it is anti-inflammatory and it can be a matter of trial and error.

[Golf1985 in reply to MustyK]

You ok,I’ve read your posts before over the years of trying to diagnose myself after 13 years of hell,I’m Uk also,especially with the microvascular stuff,they said I don’t have it but during angio in September my numbers were lower than people I have spoke to who have been diagnosed with mvd.but the reason for my peri is I had open heart surgery in October so it’s from that but over the years I have really felt that some pains have been like they are now but this is on a different level of pain,the constriction and pain with every heartbeat was bad I’m on colchicine now on my 5th day so hoping it helps,Thankyou for the reply

[MustyK]

Hope that the med will work for you. If you need more info/help from me, let me know. Take care