Pericarditis

[David E]

when does it go back to normal?

[Linny]

I am not a doctor im actually just a 21 year old girl who has had Chronic pericarditis - I have been dealing with it for 6 or 7 years now. From research and listening to doctors I know that every case is different some people go through a case that lasts a week or a few months and then it goes away completley never to come back but then someone people continue to get it for quite some time. Depending on where you live the colder seasons or any season change seem to effect me more than usual. I have been on Naproxen - 500 mg - every day for a few years then I started taking it every other day. I began to take myself off of it and for 6 months with no anti-inflammatory I was fine - then about a month ago I was feeling the pains again - took the Naproxen twice a day for 2 weeks and it got better - now I am off of it again so we will see how long I will go without having a "flare up" as we call them in my family - I also have Indomethacin in case it gets too bad - it hurts my stomach but always seems to make it go away quickly - I also carry Vicodin with me wherever I go - if it starts to get bad that calms me down and takes away the pain for a while. I hope it gets better for you it certainly is not an enjoyable experience when you are feeling so much discomfort from it.

[David E]

thanks Linny, for taking the time to reply.i dont even want to contemplate having this condition for any length of time, only had it for three weeks now and thats three weeks to long.cold weather seems to affect me also, im not on the heavyweight tablets youre on but its nice to know their out there if needed, thanks again hope you feel better soon.

[Ana]

Hi Linny,
You make me want to cry.
I am so new to this and this has been my 4th "flare up" as you put it in the past 11 months. This one landed me in the hospital for a week and in CCU for 3 days.
I am crying. I DON'T want this to ever happen again. I am still on bedrest and am going back to a new PCP today to get referrals for a rheumatologist and then back to my cardiologist. My old PCP told me it wasn't necessary to see a cardiologist since we knew what it was!
I am on Prednisone now, the indocin you speak of, Ativan and Zofran for nausea. But my stomache is OK because I am taking Prilosec.
I only got out last Friday night but am still, short of breath when I walk to the table and still have discomfort in my chest (positional) but no pain. Only quick zaps sometimes so therefor I am getting better.AND SO WEAK!! I am sleeping downstairs in a beach lounge chair and I just don't want this to happen again!!
I stumbled across this forum and am so sadly happy to find someone like me.
I can't take anything strong like a narcotic for pain because when they gave it to me in the hospital I crashed. 2 times within 24 hours which is what landed me in ccu.
Do you think there is anything that can cure us? Maybe something natural?

Normally I am very active and healthy!! I work 3 jobs one is with kids in a before and after school program. This one blindsided me. But I did experience the signs the day before it happened.

Thank you for listening.
I hope you get back to me sometime with any advice.

~Ana

[mother]

I too have had this for over 5 years. I am currentyl on Prednisone. It was about once a month, now it it usually twice a month. We are currently looking at other drugs to try once/day but, with many side effects. Idon't have to explain the pain to you, but it's hard to explain to someone who has never experienced it. I would not wish for anyone to ever have to go through this. I am 45 and have 3 children. I was in the hospital SEVERAL times for 2 years before I was diagnosed. I too hope there is a cure someday.

[Ana]

Thank you for taking the time to respond to me!!
I went to the DR today and he is keeping me on the Prednisone tapering it off 10mg every 3 days.
I started at 60mg when I left the hospital and tomorrow I will start the 3 days on 30.
He says to continue bedrest and just get up for bathroom and the eating at the table but not to push. He says I should be feeling much better by next Friday and if not to call and he will refill the Prednisone.
Question to anyone.. what about when your heart skips a beat? I catch my breath when it happens. It doesn't hurt but doesn't feel good at the time. It is happening several times a day and it doesn't matter if I am just laying down or just breathing or even talking.
Does anyone else experience this? It's OK right?

Well, week 2 is over. I will continue to improve everyday. Can't wait to get my strength back!!
Can't wait to get me back!!
Thank you all so very much!!!

~Ana

[Linny]

Hi Ana!

I know that you are having a tough time right now and looking for advice! It seems that your case is more severe than mine but I still know what you are going through and how frustrating this is. About the heart skipping a beat several times a day....I have only had that happen to me twice - my gut tells me that it is not ok because while many people have pericarditis their actual hearts are ok and heatlhy. It is very possible that your pericarditis is constricting bloodflow to your heart?! My best advice would to definately go to a cardiologist - it can't hurt - your PCP knows about pericarditis but a cardiologist has studied it and is a specialist and knows so much more about it. My PCP recomennded I went to a cardiologist and I am glad that I did - please go for your own sake!!!

You said that the heavy pain meds will make you crash - I am assuming you can't take the Vicodin then? I usually carry it with me wherever I go because it really does help a lot but since you can't take it you have to find other ways unforunately. Some helpful hints when you are experiencing another flare up - usually I stop what I am doing sit down, prop pillows or anything behind my back and lean forward - it has helped me a lot with the inital pain and I can calm myself down and not hypervenilate (which is not fun at all obviously!) - I usually take a vicodin at this time too but maybe there is some type of relaxer out there for you even if it was something herbal - the more worked up you get about it and the more stress only makes it worse. Also I have found that the healthier I eat the better I feel - drinking soda, beer (anything really carbonated) and greasy, fatty foods will make my chest hurt - I am not sure what your eating is like but I try and stay away from it because for some crazy reason it makes it hurt!

Keep resting- it must be a pain and frustrating :( - if your no finding all the answers you want then keep going to different doctors eventually you WILL find one that helps you more than you ever could have imagined - I know that a lot of people are on the steroids to help with the inflammation I am just on 500mg of Naproxen twice a day. I was taking nothing for six months and then suddenly when it began to get cold out it started again - and last night (thanksgiving) i had an awful flare up and am feeling pretty crappy right now.

I don't think there is a cure for it unforunately - my cardiologist said that he saw a girl who had it for 7 years and suddenly it just went away - it is different with every perosn - I have idiopathic perciarditis meaning they don't know the cause - some of the doctors think it may have been a virus from going to the dentist I guess that is common in a lot of people!

Keep in touch - let me know how it goes and stay strong hang in there you will start to feel better - this could be something you have to battle with for a while but I hope that it isn't. Good luck!!

Lindsy

[Ana]

Hi Lindsy,
Thank you so much for everything!!! I am really REALLY weak from the DR appt yesterday. It was the first time I was up and then had to walk downstairs, car ride, walk into the office but after that I rode in a chair for x-rays and stuff to see if the fluid was better in my lungs. I had pleurisy going on too I guess. But I know that I am better because of the pain factor although the pressure was very noticable last night. I stayed completely down for the day and just now got up to eat some watermelom at the table.
Boy is this good AND thank God I am feeling better than this morning!!!!!

I will go to the rheumatologist on Monday am but the PCP said that my tests all came back normal for that. He is my new PCP and is going to talk to the cardiologist that I saw in the hospital.
So yes I do now have a cardiologist because of the hospital. They will call me with an appt on Monday.

Please tell me how you are doing? Are you better from Thanksgiving? How long do your flares last when they happen? Do you get completely drained too? I am glad that Vicodan works for you.
They gave me Ativan. I think it's for anxiety but I don't really have anxiety normally just all this!!!!
It does relax me though and help me to sleep. I really hope that if I totally take it easy and don't rush myself back (which is very hard for me once I begin to feel better!) that maybe I can get rid of this once and for all.

I mean they say it's a virus right? Why should we keep getting the same virus back? It doesn't make any sense. Shouldn't we be building some sort of immunity to it?

Let me know how you're doing.

~Anna

[ginny1]

I have had ideopathic viral pericarditis for 6 months. Ask your cardiologist about colchicine--look up as much as you can about it as a medicine for pericarditis--lots of studies show that it eventually helps to eliminate or shorten recurrences of this dreadful condition. I am on it now, have been also on prednisone (unfortunately, prednisone is not the best thing to initially be put on for this condition--non-steroidal anti-inflammatories are usually the suggested medicinal course due to the difficulty coming off the prednisone later). Also, supposedly, viral pericarditis (not connected to any connective tissue factors or anything else) is usually self-limiting and will run its course (how long, who knows). There are USUALLY no complications with the heart if the pericarditis goes away. However, it is best to get checked out for other heart ailments, connective tissue disorders, etc and especially to see a cardiologist ASAP as the pericarditis can be very serious if it is constrictive or gets calcified. Effusions need to be drained if they get too big. I am not a doctor--just have done a LOT of research on this stuff to see if I can get rid of it. I DON'T like being stuck with the thought that this stuff will be around for a long time. Best to all, ginny1

[Ana]

hi everyone,
I feel so good today!! It has been SO LONG!!! Still weak and pressure etc but I FEEL a difference today! Like I am getting over the hump and will get better! Thank God!!!
Ginny, thank you for your information. I will mention the colchicine to the rheumatologist tomorrow but a Dr mentioned it to me in the hospital and the cardiologist said that he didn't want me on it. He said that there were many side effects?? But I did have severe reactions to pain meds and was in CCU so maybe that had something to do with it?
I did look into it shortly after I got home and didn't see anything too threatening but it did say to take it at the onset of a flare I think.
Is anyone else on it out there? Does anyone else have any insite or experience with the benefits of using it?
Ginny, you mentioned that you have pericarditis for 6 months. Are you still in pain or discomfort for that long? Do we just carry this virus around in our bodies until something triggers it again? Does anybody know?
Linny, how are you doing? Are you feeling any better yet?
Thank you so very much everyone!
Sincerely,
~Anna