Heart inflammation and PV? Help!

[MPNBlog]

Hello friends. I'm wondering if someone on here can help. I have PV dx Feb2017. I have been admitted to emergency with chest pain. Suspected heart attack on admission, but have been cleared of that. Angiogram found no clots. Now investgating inflammation of heart sac (perimyocharditis) or infection of heart sac. As soon as the mention of inflammation came up I wondered if it could be related in some way to the PV? I'd really appreciate hearing any experiences from you knowledgeable people. I am on Pegasys 9 months and counts are well controlled. No family history of heart disease. Having a coronary MRI next. Thanks in advance.

[Manouche]

I’m sorry to read about your chest pain. Did they rule out any musculoskeletal origin ?

[MPNBlog in reply to Manouche]

Thanks for replying Manouche. Yes, ruled that out. Have now had heart CT. All results are negative, which is good news. But no solutions. Thanks

[Otterfield]

In 2016 I was admitted to hospital with symptoms of a heart attack. It turned out instead to be viral myocarditis - just really bad luck that I happened to catch one of the rare viruses which attacks the heart, and nothing to do with my ET. My heart muscle was inflamed and this led to heart failure, from which it took several months to recover.

Whatever your diagnosis, the treatment for heart problems is fantastic now. I wish you a speedy recovery, but even if not speedy, I wish you a full recovery.

[MPNBlog in reply to Otterfield]

Hi Otterfield. Sorry to hear of your situation. That sounds like a real challenge. I have been tested for a range of viruses, including Covid because a viral infection is a possibility. But all tests negative.

I hope you are travelling well now. Thxs for replying.

[Manouche in reply to Otterfield]

Do you feel the pain right in the middle of your chest or on the side of it ?

[MPNBlog in reply to Manouche]

On the side. Does that make as difference?

[Manouche in reply to MPNBlog]

Yes it does. Heart conditions give pain behind the sternum. Contrary to popular belief the heart is not on the left but behind the sternum. Pain on the side is therefore more likely to be related to a rib problem.

[MPNBlog in reply to Manouche]

Thnxs.

[Chaz1]

Sorry to hear this. I have a couple of friends (non mpners) who have had this recently. One has had it a couple of times in the last few years & one is a fit healthy racing driver who happened to come down with it for a second time recently. Both said it's due to some sort of virus or bacteria but neither found exactly what causes it. However after a couple of weeks of treatment & rest they both recovered & back to normal. Stay safe, ask plenty of questions to get the best care & rest so you get well soon x

[MPNBlog in reply to Chaz1]

Thanks Chaz1. Viruses and bacteria under investigation but nothing positive turning up. Im glad to hear of good recoveries. Thanks for the encouragement.

[Hidden]

There is a link between dental hygiene and heart infections.

[hunter5582]

There is a link between inflammation and PV, mediated by the JAK-STAT pathway. Whether this is linked to your current cardiac issue is really hard to say. It could actually work the other way around as inflammation can drive up hematopoiesis, Cardio-vascular issues can also increase your risks vis-a-vis the PV.

Not sure where you are, but hopefully the hospital has a MPN-expert hematologist available. Unfortunately, many docs (even hematologists) do not have the requisite KSAs to address more complex situations related to PV. Not sure if it will help right now, but here is a link to MPN-expert docs mpnforum.com/list-hem./ .

Meanwhile - do hang in there. I had to have heart surgery (catheter ablation) for paroxysmal atrial tachycardia a couple of years ago. the surgery was successful. Collaboration between hematology and cardiology was very important in handling my situation. Hope you get the collaboration you require ASAP.

[MPNBlog in reply to hunter5582]

Thanks very much Hunter. I'm glad the collaboration for your heart surgery resulted in a successful outcome. I've followed your challenges with interest. Unfortunately no MPN specialist haem at the hospital here which was why I posted as the doctors seem mystified. Hence I have had a battery of tests, fortunately all negative. But they're becoming more invasive/higher risk, which they say is their duty of care to rule out any life threatening possibilities. I asked them to call my haem today and very surprisingly she said to discontinue the Pegasys until all is clear because it can exacerbate pericarditis as a side effect. So that's some important info for MPNers I'd not heard before.

Thanks for your feedback. It's much appreciated.

[mhos61 in reply to MPNBlog]

Just a thought. Have they checked for splenic infarcts?

I hope your pain has subsided. It sounds as though they’re being thorough at least.

Best wishes, keep us updated.

Mary

[MPNBlog in reply to mhos61]

Hi Mary. I haven't heard them mention that and will ask today thanks. Pain all gone now, thanks to the range of drugs. They've been very thorough for which I'm grateful. Hope to go home today, but it would be good to have an explanation and so far still a mystery. Thanks for your wishes. This group us so reassuring to know you're not alone.

[mhos61 in reply to MPNBlog]

I must say, I’m really impressed with the level of care you’re receiving. It’s great that you’re not in pain, but has the pain gone or, are the drugs ‘masking’ the pain? It’s a bit of a dilemma for sure.

I do hope you get some answers soon. I agree with your haematologist halting Pegasys treatment, as it just maybe related. Rest assured, you are in the best possible place.

Keep pushing for answers!

Good luck and update us.

Mary xx

[MPNBlog in reply to mhos61]

Thanks Mary. I came out of hospital today and feel well though very tired. No clear result, though cardiologist is now confident my heart is fine after all the testing, and no follow up is needed re heart. Something to be grateful for as I know many MPNers haven't been so fortunate. Most likely it has been an infection somewhere in the chest like a pneumonia. I'm to have a follow-up telehealth meeting with my haematologist as soon as possible to work out the return to Pegasys, and to see if she has any insights from all the test results that have now been sent to her. Basically a mystery. If I learn anything more that might help others I will let everyone know. It has highlighted for me how little is known about MPNs and the complications of MPNs.

I am so grateful to be in this group and the responses have meant a lot to me when I felt quite isolated. Thanks to everyone for all the support.

[mhos61 in reply to MPNBlog]

This forum is wonderful, and it’s good to know you felt a sense of support in your hour of need.

It’s great that there’s nothing wrong with your heart. You must be feeling quite relieved. However, for your sake I hope you get some answers, something obviously caused pain significant enough to question the possibility of a heart attack! Maybe your haematologist will be able to throw some light on the situation when he/she reviews your test results.

I’m sure I read somewhere about splenic infarcts presenting very rarely as upper left chest pain. But don't quote me on that.

It would be nice for you to update us. We can all learn so much from each other.

Best wishes

Mary xx

[Cja1956]

Hi. I was diagnosed with ET Jak 2 positive in 2008 due to high platelets. My doctor put me on hydroxyurea and when my platelets went down to the normal range, I stopped my meds. I remember having a really stressful day at work and having weird stomach pains and when I got home I felt the worst pain I have ever felt on my left upper chest area. I called emergency and I ended up being diagnosed with a splenal infarct, which is a fancy name for a blood clot in my spleen. I don’t know if my story helps you at all, but I hope they find what’s causing you pain.

Good luck.

[MPNBlog]

Update: I have now had a tele-health appointment with haem. Seems most likely that I had pericarditis plus a lung infection similar to a pneumonia. Pegasys can cause pericarditis in very, very rare cases, so staying off that until more tests done. Tests are for infection, inflammation markers etc. If all clear I will restart Pegasys, as my drug options are limited - I can't take Hydrea. I was admitted to a Coronary Care Unit, and had the full raft of heart tests to rule out life-threatening possibilities. Of course it could have been a clot (coronary or splenic as mentioned above), and my troponin level was raised, so it's understandable this occurred. No further concern about my heart, which is good. I'm inclined to think that the inflammatory nature of MPNs, pre-disposes us to unusual things, and non-specialists are challenged to deal with that as they are unfamiliar with MPNs. I'm thankful for the good care, but reluctant to have such invasive testing again if I am admitted with chest pain (this is the third time), highlighting the challenge for MPNers. Thanks again everyone for your responses and concern - much appreciated.

[JaK2ET]

I've only just read this interesting thread and I hope that you are now feeling a lot better.

[MPNBlog in reply to JaK2ET]

Hi JAK2ET - Yes I'm much better thanks. Restarted the Pegasys 3 days ago because CRP and all autoimmune and rheumatology tests etc were normal. I am on Colchicine tabs for 3 months which is supposed to help prevent a return of the pericarditis (whether or not you are on Pegasys). I will be watching carefully because if the pericarditis returns, there's no more Pegasys for me (and I don't want to be back in Emergency).

It's all a bit strange as there's no real answer. There's no problem with my heart itself. I wonder if the effects of MPNs are quite far reaching and not well understood. One of my theories is about blood flow, blood vessel walls and mis-shapened red blood cells caused by PV, all affecting circulation. I get erythromelalgia flares which is micro-vascular disturbances, so I've read up on that a bit.

When you go to emergency with chest pain the first thing that occurs is to give you lots of blood thinners in case it's a heart attack (300mg aspirin and 2 blood thinners into the canula). So by the time you get a chest X Ray, MRI and CT scan, if they are rare micro-circulation issues they have gone. Now that's good. And the intervention prevented a heart attack, if that is what was starting to happen. But when it wasn't a heart attack, there's no other answer, and all the tests come back normal. I'm glad there's nothing serious appearing in test results, but I would feel better if there were some answers so the invasive testing doesn't happen again if it's unnecessary. Problem is, who will make the call on that - the hospital tries to rule out life threatening things. I tried to prevent having the Pulmonary CT as I was feeling OK by then, and was told, what if you have a pulmonary embolism? A bit hard to lie there and say I'll take the risk...

I think there needs to be more holistic medical support where they look across different specialities. I had a cardiologist trying to deal with a blood issue. Sorry for the long post - this has been playing on my mind. Thanks for your query, I'm much better now.

[JaK2ET]

Thanks for your reply, which is very interesting - for instance, the fact that you have been prescribed Colchicine to prevent a return of the pericarditis ... as this is a drug that was sometimes prescribed for my late father when he had occasional flare-ups of gout (so it must have a wider range of anti-inflammatory applications).

I agree with you about the lack of a holistic approach in the NHS. After my ET diagnosis (Feb 2019) I had various scans and was sent (or my results were sent) to other specialists (cardiology, dermatology, even the kidney people I think). The dermatologist did not think that my skin symptoms were anything to do with the ET, though I suspect otherwise. My scans showed a small, stable pericardial effusion, which I think means a bit of fluid in the sac which surrounds the heart; apparently this is not serious of itself (and not necessarily related to the ET?) but needs to be checked from time to time, to make sure that it is not increasing towards cardiac tamponade (which would be an emergency); my latest echocardiogram was due in May but was postponed, presumably because of the CoViD19 situation. I do feel slightly worried that there is no one doctor who has a complete grasp of the full picture (though I think my haematologist is doing his best at the centre of the team) ...

Best wishes for your continued recovery.

[Magentas]

Hi again, I have a question about the angiogram. The term came up, in my world, for the first time just yesterday, I was told that it requires a fair dose of radiation with a question mark referencing to whether I would be happy with that. I’ve always hated the idea of hefty doses of radiation exposure. How did you find it, was it worth it? Don’t you know if you have a clot or do they just sit there undetected until they stuff things up?I have my first cardiologist appointment soon, along with a doppler ultrasound due to family history and, I guess, probably being a past smoker, I imagine.

[MPNBlog in reply to Magentas]

Hi Magentas. For the angiogram I had to sign a permission form before they did it. Because I went to Emergency with chest pain and the blood test they took showed a raised troponin level, the Cardiac Registrar was fairly confident I was having a heart attack. I asked a lot of questions and I asked if was it necessary. They basically said that it was standard hospital procedure to rule out a heart attack or pulmonary embolism both of which can kill you or disable you. These are the most serious things to deal with and need to be ruled out before anything else. It was all rather urgent and dramatic in the middle of the night, so no time to sort out how potent the radiation was. I agreed and signed. Turns out I didn't have a heart attack. But it probably was the right thing to do at the time.

If you're off to the cardiologist, they should be able to answer all your questions, and you should have time to make a considered decision.

You don't feel anything regarding the radiation dosage - it's just like getting a chest Xray. Where they put the wire in your wrist (to deliver the dye to the heart) they numb the skin, so I didn't feel anything, and you don't feel the wire going up the vein. You can watch the dye insertion into the heart on a large screen - quite fascinating. But it takes several days to heal where the wire goes in your wrist. An inflated pressure wrist band is put on so it doesn't bleed from the puncture, and they release a bit of pressure each day until it's healed. Mine did bleed, which caused a bit of commotion and they had to redo the pressure thing.

For my circumstance, knowing what I have learned now, and that my heart is ok (it was followed up with extensive testing), I wouldn't agree again so quickly. I would ask firstly for the cardiologist that I was subsequently referred to and who did all the follow up. My heam also said to ask for a DDimer blood test on admission, as that gives an indication if you have clots, an important issue for MPNs. If the DDimer isn't raised, I wouldn't agree next time without further information. But I didn't know all of this at the time.

It is a lot of radiation eg I was also sent for a chest Xray that day (relatively low dose of radiation). It was the same radiologist and she refused to do it saying I'd had enough radiation for one day.

In the end I guess it depends on what the reason is - eg if it might save your life. Or would it significantly change your treatment? It also depends on what other radiation you've been exposed to over months and years and when. And it's all a good reason to carefully watch your bloods and make sure everything is well controlled.

I hope that helps.

[Magentas in reply to MPNBlog]

Oh, gee, thank you, yes it helps a lot. Although it’s hard enough learning all the new medical terms and what may or may not relate to me and questions I should ask re the MF…and now cardio stuff!! I will just have to copy and paste your reply and place it in my folder for referral later. I really do appreciate you telling me so much! When that time of day comes that I am on here, online, I’m so exhausted I find it hard to even talk so I think you are very kind and generous.

I read your reply to JakET above and that was very informative as well…. not that I understand too much about it yet, but it may come in very handy down the line.

I wish I could help you in return, but to suffice, I really wish you the very best and the best of luck with everything.

A year on antibiotics due to a misdiagnosis! May nothing like that ever happen to you again!

[MPNBlog in reply to Magentas]

Hi Magentas. I am travelling well now thank you. I have been so appreciative of the support I have had on this site that I am more than happy to respond to people if it might be of help. Look after yourself and keep us posted on your progress. I'm sure others on this site with MF will support you. Best wishes.