Pericarditis Support Group

I'll go first:

Prednisone (varying amounts)

Colchicine (0.6 mg/day since onset)

Ibuprofen (2400 mg/day since first recurrence)

Indomethacin (150 mg/day since second recurrence)

I am going to see a Rheumatologist soon to see what ideas he has for treatment since he has a lot of experience of treating people with inflammation.

And I am going to meet with a Dr. of Eastern and Western Medicine this Friday to see what she thinks. She has treated people with pericarditis in the past. I am hopeful. She uses acupuncture, herbs, special diets etc. to treat people.

I REALLY want to hear from others on this topic. What have you been given? What has worked? What has not worked?

Hi Hazel,

Hope you are doing well these days and getting better.

I also went to a Rheumatologist who did nothing for me. He did tell my Cardiologist to put me on Prednisone. My Cardiologist wants to wait because he says he doesn't want to hurt me. He tells me that he has had patients who have been taking prednisone for years and it has caused them diabetes and problems with their kidneys. He also told me that they have more reoccurences. I have been taking Colchicine, Naproxen, and Valacylovir. A month before my initial episode, I had a cold/cough and the week before my initial episode, I had a cold sore on my lip. The Valacylovir is a new medication to treat cold sores/herpes. Anyhow, I am feeling much better, just a dull ache at times, some shortness of breath with waling too much and walking up stairs. Overall, I think I am doing much better and am very gratefull to God for each day. Let me know how you are doing. God Bless you.

Juliette

Hi Juliette,

Thanks for your reply. I haven't been told about Naproxen. Is it a non-steroidal anti-infammatory drug? The Rheumatologist wants to put me on Methotrexate and have me weaned off the Prednisone. I am trying to weigh the pros and cons of each right now. The Methotrexate is a non-steroidal anti-inflammatory drug used to treat people with rheumatoid arthritis. The rheumatologist says that even though it completely knocks your immune system down, it has less long-term effects than the Prednisone. I have a young son and want to start nursing school in January, so the thought of having a very weakened immune system is a little scary. The Prednisone weakens it some, but not as much.

If you are still having pain, you must still have inflammation. Have you had an echocardiogram done to look for an effusion? I tend to get effusions with my recurrences. From your symptoms, it sounds like the medicines that you're on aren't treating your condition fully. Is there something stronger than Naproxen that you can take? How is your doctor monitoring your inflammation. My Cardiologist looks at my sedrate and CRP markers. They go up when I am having recurrences. I was sad to go back on the Prednisone, but the inflammation was not responding to the Indomethacin during my recent recurrence. My Cardiologist and Rheumatologist are willing to work with me to find the best combination of drugs to treat this. I just need to decide which medicine to take. There is the danger of scar tissue building up on the pericardium and making it thicker and constrictive to your heart, so it's hard to let it go for too long if a drug isn't working.

I am also seeing a Chinese Medicine doctor who has degrees in Eastern and Western medicine. In her view, the Prednisone is a better option than the Methotrexate. I am being weaned from the Prednisone again while we give the Chinese Medicine time to work.

I hope you are doing OK.

Take care,

Hazeldee

Hi Hazeldee,

Nice to hear from you so soon. Yes, the Naproxen is a non steroidal anti-inflamatory drug. I am taking 750mg of Naproxen twice a day, .6mg Colchicine twice a day, 500mg Valacylovier twice a day, and now I am taking fish oil/omega 3 1200 mg each capsule and I am taking 4 capsules a day, and 500mg vitamin C. I have been feeling pretty good these last days, but tonight I got a little shooting pain on my left side of chest. Once in awhile I get a dull ache, lately not often, but never a shooting pain. I think maybe because I was watching the movie "crazies" I have only had this condition for 3 months. It does feel like I am getting better and not worse. I can't say I have pain, it doesn't feel like that, just a dull ache at times. Tonight, unfortunately, is one of those times. I am able to function, just when I walk up hills, stairs, even pavement with a slight incline, I get a little short of breath, and I feel much weaker, not having the energy I used to. I think my circulation has been effected. I have noticed that the fish oil capsules help a lot. Last time , about 3 weeks ago, I went to my Cardiologist and my effusion was less. He said it was not enouph liquid to do a drainage, so I guess that is good. Maybe these things take some time. I know I still have the inflamation and my sedrate was 60 last on the last blood work and the crp was 43 I think. So yes, there is inflamation, but that could be from my colitis, or pain in my right leg. The Rheumatologist said that a lot of his patients with medical issues have much higher than mine. It sounds like you have had this "Pericarditis" for about 1 year now. Is that correct? It sounds like the Prednisone works, but as soon as you stop taking it, your "Pericarditis" comes back. This is one reason why my Cardiologist doesn't want me taking it. He told me that some of his patients have been taking it for years. He has patients that have gotten diabetes and kidney problems. I have read that some people are healed in a few weeks. I guess that's not us. My Cardiologist told me that my case is unique. I don't quite understand it all. I may be getting a second opinion soon. Let me know how your Western and Eastern Chinese medicine works. Like I said, I am not having pain, just this dull ache once in a while. How do you feel when you are having a recurance? What are your symptoms? I hope you are feeling better soon. God bless and heal you.

Juliette

Hi Juliette,

I am so glad to be in touch with someone else going through this. I was hoping that people would come back to this group if I started posting here.

Thanks for all of the information about your medications. I did a little searching and it looks as though your doctor went the prescription Aleve route (Naproxen) rather than the Motrin route that my doctor took. They both do the same thing (relieve inflammation) and I have read that the results are generally the same. You take double the amount of colchicine that I take. I have never taken more than 0.6 mg per day. I do have a cardiologist who likes to use prednisone to treat pericarditis. I wish that he was more middle of the road on that one. But at the same time, it is really up to me at this point which treatment we use. I tried a non-steroidal, Indomethacin, during this last recurrence and it didn't work for me. I may try it again now that my CRP and sedrate numbers are back to normal.

I would highly recommend talking to your current doctor about your options. It sounds like they are doing a good job at keeping you off of the steroids, but at the same time, it does not seem that they have you on the right combination of drugs. Pericarditis should not be a chronic pain condition that you are destined to live with forever. The fact that you have had an effusion (however slight) for the past 3 months means that the medicines aren't doing their job to get rid of the inflammation, which is why you still have pain. The ideal thing is to be on medications that keep your sedrate and CRP low. You don't want this constant inflammation of the pericardium to cause a build up of scar tissue. When the pericardium thickens from the damage, you can have decreased heart function. That's my long-term worry.

I'm not sure why your doctor thinks your case is unusual. To me, it makes sense that you are still having issues since you had an effusion that essentially didn't go away. The only way I recovered from the initial pericarditis and effusion was that they drained the effusion (400 ccs of fluid). I felt SO much better than I had in a month once it was drained. The recurrence rate for pericarditis is really high, so I'm not super surprised that I am still dealing with this.

I am trying to decide whether or not to try several years on Methotrexate or not rather than the Prednisone. My pericarditis seems to respond less to the more recommended treatments of non-steroidal anti-inflammatory medicines. I am holding off for now while I wait to see if acupuncture and Chinese herbs can help me.

Sorry this is turning into a novel. As for my symptoms when I get a recurrence, I usually notice some slight muscle pain in my back or shoulders first. This time I had a little pain in one spot in my back for about a week, then I woke up and had pain when breathing. Any muscle pain I have had in my back and shoulders since my initial pericarditis has been from a recurrence. They call it "pleuritic pain". My body seems to be really sensitive to the inflammation and even small effusions. In February I was in the hospital with my first recurrence. My cardiologist was surprised that my heart rate was so high (around 120-130 resting and 160 when I got up to use the bathroom) since the effusion was so small. Do you monitor your heart rate daily? You might want to keep an eye on it.

Incidentally, I had extreme shortness of breath last November before I knew that I had pericarditis. I was still hiking and walking with my baby back then and would get much worse chest pain after even the smallest walks. Since you are choosing to not use prednisone, I would really limit activity if I were you since you need to just focus on getting rid of the inflammation and effusion.

I hope you start feeling better soon.

Take care,

Hazeldee

Hi Hazeldee,

Thank you for the information. My heart rate is never fast,it has been normal. That's great that your CRP and Sedrate are normal. My husband has a wonderful cardiologist and I think I may join his group, the problem is I wouldn't be eligible until January 1. In the mean time my doctors work out of Ceters and I have asked for a second opinion from another cardiologist. My cardiologist told me he can't drain the liquid because the amount is too small and it would be dangerous. Based on that information, I guess the medications have been working reducing the fluid, but it has taken 3 months. I feel good, not having pain. It is confusing to know what steps to take, but I think I should get another opinion. Thank you again for your information. Hope your days are good.

I have a question for you guys. What are some of the side effects you have experienced on the meds you been put on? I am on Indomethicin 200mg/ day, colchcine 1.6 mg/ day, pantaloc 40 mg/ day and various supplements. Some of the side effects I am experiancing are headaches that make me dizzy and hard to concentrate on a conversation for example. I also am really constipated and bowel movements are extremely painful ( I try to control this with diet). I also used to have a blood pressure that sat at 94/ 58 (I was really active) and now after 3 months it's at 138/ 90. Anyway, I think most of my symptoms are caused by the Indomethicin and I'm talking to my doc about switching to naproxen on Tuesday since the Indomethicin doesn't seem to do anything but make me feel weird. The only problem there is that my platelets sit slightly low naturally. Any really negative side effects with naproxen?

The indomethicin that I was on briefly during my second recurrence tore my stomach up. I had to switch to prednisone during that flareup and I had trouble keeping the prednisone down at one point, because the indomethicin had my stomach so messed up. That's all I have about that one. I didn't take it long enough to have any other symptoms. I use ibuprofen rather than naproxen. Naproxen is Aleve. It's just a different type of anti-inflammatory, but doesn't have a mechanism much different than ibuprofen, to my understanding. Other than the normal stuff of the anti-inflammatory drugs being rough on the stomach, I haven't heard of any other side effects. I think there are several here who have taken naproxen. I hope the medicine switch doesn't make you feel worse. I am in the process of trying to get my dosage of medications right as well. Unfortunately for me, prednisone has been the only thing that has worked for me. Good luck! Keep us posted!

Hey Hazeldee,

So I am on the naproxen now and not much change. I think I may be improving but I don't want to say yet. I was feeling better until dec 25 and then declined again time will tell. I have just started acupuncture and I'm curious if you noticed any difference from it. I am also wondering how you are doing on that methatexrate (or whatever it's called)? All of you are in my prayers.

Nmarie

Hi Nmarie,

Well, I didn't necessarily notice any difference when I was doing acupuncture...the prednisone kind of hides all symptoms. But, I can tell you that after changing a few things like 1. Started only taking 0.6 mg colchicine on MWF vs. every day 2. Stopped going to acupuncture and drinking the Chinese herbal tea (financial reasons, though we found someone local who is covered by our insurance, I just need to set up an appt.) 3. lowered my prednisone to 10 mg I had another recurrence during the week before Christmas. I need to look up info to see if my body has just gotten used to the prednisone, and it's not working the same any more. I had to up my methotrexate and the prednisone during my recurrence. I also upped my colchicine to 1.2 mg per day on my own, because it's worth experimenting. I now have myself on 18 mg of prednisone daily and I am noticing some slight symptoms again. My doctor upped my methotrexate again for this week (I take it tomorrow). I don't mean to give too much information, but I have noticed that I seem to have issues with recurrence right before I start my period. I have read that your CRP does go up during your period. It's just interesting to note.

So, have been on methotrexate for 12 weeks tomorrow. My rheumatologist said that it takes 8 to 12 weeks for the methotrexate to stay in your body and start working. I started on a very low dose low, so that could have something to do with it as well. Who knows.

I do pretty well on methotrexate. It has made me feel a little nauseous the day I take it, but not too bad. I think it makes me very tired though at least on the day I take it.

I really really really want off of the prednisone. I have been on it now for over a year and it sucks. But, it has been the only thing to work during recurrences. And my recurrences end up as effusions if I don't use prednisone to treat them. And I do not want another effusion. I wish I was never started on the prednisone, but who knows if anything else would have worked after my surgery when my CRP and sedrate numbers were very high. All you can do is wonder. You can't know anything for sure. I think acupuncture can't hurt for your case. It sounds like a lot of meds. aren't doing the trick for you, is that right? I am sorry you're dealing with this still. I just want to be healthy again. My rheumatologist has successfully treated people with methotrexate or drugs of the same kind but stronger. If I were you, I'd try and meet with a rheumatologist to see what they say about medications. Methotrexate could potentially help and it doesn't have the nasty long-term side effects like prednisone. I would do whatever it takes to treat it without prednisone. I was hesitant to start the methotrexate, but realized I was running out of options. Then, when it came down to it, I wished that I had started it sooner since it takes so long to work.

Keep me posted. How are you feeling now? Are you being monitored for an effusion? I have learned that rest is key. Do you have to work right now? I have been home with our son during all of this luckily. I start nursing school next week though, so I won't be resting much. Not that life with a toddler leaves me with much time to rest now though.

Take care,

Hazeldee