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mnjodette
01-24-2007, 07:00 PM
Just when I thought I was doing better, the pericarditis came back for a visit. Called my rheumy on Monday and told her I had a bad weekend. Lots of pain; shortness of breath; hard to lay flat without pain..the usual. She called and said to up my prednisone by 2.5 mgs. (not exactly a surge) and said if it got worse to go into the ER to be evaluated. Now, I know that they never do anything in the ER except to bump up my prednisone. But, it got worse, so I went into the ER again today. Same old, same old. Lots of tests; "Yup - pericarditis is back" (I could've told them that and saved my insurance company about $5,000.) So, they gave me a 50mg surge of prednisone (I'll never sleep now) and wrote me a prescription to take for a few days. Then they wrote in the orders to see my internal medicine doctor as soon as possible?! My internal medicine doctor is my PCP, and I love the guy, but he's doesn't treat lupus patients - that's why he referred me to my rheumy. Sighhhh. I'm sooooooo sick of this, and I'm angry that I can't figure out how to manage this myself. :mad: My husband is upset that my prednisone is increased (his father died from long term steroid use for asthma and arthritis.) He actually scolded me for going to the ER. I know he's just worried - he's been incredibly supportive since I got sick. But, still, it hurt to be scolded for doing something that I thought was right. But, I'm just not going to do it anymore. I have to figure out how to manage it myself - with my doc's help - because ER visits just aren't the answer. I want so much to be off prednisone and to feel normal. One of the nurses in the ER has a sister who has had lupus for a long time - more than 20 years. Pericarditis was her 'enemy' too, and she eventually had a pericardial window put in. She's still on prednisone, plaquenil and imuran. Fortunately, I had only a little pericardial effusion (fluid) so no worry there. It's the pain and shortness of breath that scares me, even when I know it's not a heart attack.

How long does it take imuran to work? I've been on it for a number of weeks now, and I'm at 150 mgs (probably as high as they'll use for me.) If imuran doesn't do it, what's next? (Methotrexate didn't work.) Or, am I a wimp? Will I have some of these pericarditis flare-ups no matter what and I shouldn't worry about them? What if I just 'toughed' it out and kept on the plan to wean me off prednisone, and ignored the pericarditis symptoms? What's the worst that could happen?

Now the joints in my fingers are swelling and feel stiff - that's new. Lupus, I assume?

This is depressing. I want it to be over with - like the flu - but that's not going to happen, is it?

Sorry for the whine, whine, whine. (If I'm going to serve "whine" I should at least offer you a little cheese. :lol: ) Thanks for listening, whoever is out there.

Jody

MARYCAIN
01-24-2007, 08:28 PM
Jody, did your doctors ever try you on colchicine? I had several bouts of pericarditis until I started taking it regularly - I've only had a couple of mild episodes since then, nothing like before.

Hate to tell you, but Imuran can take a long time (three months to a year) before you get the full benefits from it. Some people see improvement quicker, others don't. So if you've only been on it a few weeks, it may need a little longer to kick in for you. And with the Sjogrens, higher doses are probably not an option because it increases the risk of developing lymphoma.

Have you had a complete workup by a cardiologist or an infectious disease specialist to make sure the recurring pericarditis is actually inflammation from the lupus, and not a bacterial, viral or fungal infection that flares up when your immune system is suppressed? Early on in my fun adventures with lupus, my PCP thought I had pneumonia, but it turned out to be a dormant case of histoplasmosis that kicked into full gear when my immune system was suppressed by the lupus meds. If you have any type of dormant or latent infection, it can come to life because of the lupus meds.

kimb
01-24-2007, 08:39 PM
Jody, Jody, Jody :angel:
Oh, I wish your pain to be gone! Girl, I am with you on all this pericardits BS!!! I am in your boat too! I cant tell you how your post sounds exactly like me! Every time I go to ER, it is the same thing....here in my rual area though, they never find anything, but tell me to increase my pred. then a day later, after suffering all night I get results from my echo and they say ya, its pericarditis. Last June, I was getting ready to go out of town, here comes the pain, fever and yuckyness, so my pcp couldnt see me, sent me to ER. Same thing, they said they dont know(I knew, so I upped my pred myself) turns out they called me 4 days later to say yes, it was pericard. I was soooo mad. Got my bill canceled because of their mistake. I have had about 8 episodes of pericard. Since my diagnosis in April 05. Always when my pred gets below 10mg.
I am too, soooo sick of this business. I keep wondering how many more times will I have to go through with this before my rheum. trys something else. And my husband....! wow! he sounds just like yours. He tells me, you are your own doctor, why go to ER, they are going to tell you the same thing....nothing....My husband worries alot also, but gets angy with the drs. as well.
I have been on Methotrexate for almost a year. Just increased the dose to 15mg. Started Colchicine(gout med)in June of last year. That is supposed to help with inflammation, and so you could reduce the pred easier.....HuH? I am still on it., still on 18mg pred.(havent reduced it since Thanksgiving pericard. episode, as we will be going to Hawaii in a week) Why dont you meet me in Hawaii? HA :lol:
This last time around my pain was worse. I actually had to take Vicodin. I never, never take pain meds. Had to. I decided, why suffer and be tough this time?.....I couldnt take NSAIDS before because I was on blood thinners, and they also make me sick.
I too want to be off prednisone, I cant stand this darn YO-YO pred!!! my face cant take the in and out puffiness=I feel like a blowfish!!! :shock:
I am begining to worry about pericaridal thickening. I have slight thickening already.
I do see a cardiologist. I wish he and the rheum would get on the ball. I have heard that its just a matter of time and the right mix of meds. Well, its time, baby!!! :lol:
Can you be emailed? Would you like to stay in touch? It is nice to keep in touch with others that have these same issues.
Hope you feel better, better, better, soon, soon, soon!!!!! :D :D :D
Kim

mnjodette
01-25-2007, 03:12 AM
Marycain, I wouldn't say I had a 'complete workup' by a cardiologist, but I did see one. He said no one in their cardiology department has a lot of experience with recurrent pericarditis and he really wanted me to see someone at Mayo Clinic. Instead, I went to see a rheumatologist at the U of Minn Medical Center (also very good.) She didn't seem to focus much on the lupus, but instead seemed very focused on Sjogrens. I know that's a concern, too, but I had really wanted her to give me some new direction for the pericarditis problem. She claims in most cases, lupus 'burns itself out' as women get older - post menopausal. Well, I wasn't diagnosed until I was post-menopausal, so I don't know how true that is in my case. Talked to my doctor about colchicine, but we had just switched to imuran and she hated to start two new drugs - we wouldn't know what was working and what wasn't. Made some sense I guess.

Kim, thanks for all the words of encouragement. Check your PMs.

Prednisone has me awake again, but I think I'll try to get back to sleep.

Jody

homenow
01-25-2007, 04:47 AM
mnjodette,

I'm new here, and don't have any information to offer. Just wanted to say I'm sorry you are having to deal with this. Hope you get some answers and help real soon :)

mnjodette
01-25-2007, 07:59 AM
Thanks, Homenow. I love the good advice people on this forum provide, but the support is even more important.

Gerri
01-25-2007, 02:49 PM
Hi Jody

I also have seen my heart Specialist re a pericarditis effusion he said mine hasn't changed in six months so he is not overly concerned, and has advised me to get into see a Rheumy as soon as possible. Well I am still on a waiting list and won't be seeing a Rheumy until August at least.

The pain from the pericarditis has settled. Having sex takes my breath away:) I get shortness of breath, and pain. So dear hubby he has been doing without. poor poor guy.

I had asked if pericarditis was arthritis related. I have finally gotten my answer thanks.

Jody, I know how you feel, I am glad that you whined, because I would never have gotten my answer.

Take Care

Hugs

Gerri

MARYCAIN
01-25-2007, 03:16 PM
Jody, I'm still waiting on that post-menopause burnout too - I don't take HRT so I can't even blame that. The only benefit I noticed from menopause re lupus was not having the 2-3 awful days of extreme flare pre-period - everything else has pretty much stayed the same. So I'm wondering if that might not be one of those "myths" about lupus that some doctors pass on to their patients - like "everyone" with lupus having a butterfly rash. Although with the strange things lupus does to my body temperature, sometimes it's like going through menopause all over again. But it would be nice to think that the disease does burn itself out sooner or later, although in our case it seems like it's going to be "later".

It sounds like it would be a good idea to get the cardiology referral for Mayo Clinic - just to make sure there is nothing besides pericarditis going on. Do you know if the doctors ever drained off any of the pericardial fluid and tested it? Although it's not a painless procedure, it is the best way to rule out any underlying infection.

mnjodette
01-25-2007, 07:13 PM
I've never had enough fluid to warrant draining it off (always some - but less each time.) I'm meeting with my rheumatologist in a couple of weeks and I have 3 pages of questions for her. I still feel like doo-doo today, so even though I had a total of 100mg of prednisone in 24 hours, it didn't cut the pain in my chest.

Marycain, I just got a copy of the letter from the rheumatologist at the U of M Med Center with all of my blood work results. I can't make heads nor tails of most of it. I seem to remember you providing some really basic ranges for common tests (some time ago?) I tried doing a search but couldn't find it. Maybe I imagined it. I don't want to 'self-diagnose' based on these results, but it would be nice to know what range I fall in for some of them. (I will discuss with my local rheumy.)

You know what's funny? I keep looking at these blood test results and thinking "they don't look so bad - maybe I don't really have lupus." Weird, huh? I suppose it's possible - people have been misdiagnosed. There's a part of me that would be embarrassed if that was true. You know...'all this fuss for nothing?!?!' But, mostly I'd be happy - and a little scared about what caused these symptoms then. The mind takes you strange places, doesn't it? :roll:

Jody

MARYCAIN
01-25-2007, 08:18 PM
Hi, Jody - if you can list the names or abbreviations of the tests you need reference info for - I'll be happy to provide any info I have available - some doctors order more "exotic" labwork than others, but maybe we can help you make sense of it.

Missy
01-26-2007, 09:44 AM
I'm thinking of you Jody and hoping you get better really soon!

If you go to the same lab every time, they should have a guide for normal ranges. Mine comes right next to my lab results. There are some mild differences in lab "normal" ranges, and it may have to do with the method they use to get the reults.

Good luck!!!!!!

mnjodette
01-26-2007, 10:18 AM
Thanks, Missy. My lab report didn't list the normal ranges. I wish it did - there is some 'narrative' info included after some of the results, but even that is a little hard to interpret. I was a little surprised that the doctor didn't include more info - the clinical results are just a bit much for a lay person to figure out!

My labs were all pretty normal initially (except for an elevated ANA and a couple of other indicators) so I'm not expecting that they'll be different this time. My regular rheumy doesn't do a lot of labs on a regular basis since she said they really don't change the course of treatment. The only labs I have done regularly are the ones that watch for any toxicity due to the meds I'm on.

Jody

kimb
01-26-2007, 11:30 AM
Jody,
When my pericarditis is flaring, my white blood cells go pretty high. Last time they were around 23.0 something. I think norm is around 4.6-10.2 .
What did yours read?
Kimb

mnjodette
01-26-2007, 11:37 AM
My hemoglobin was 13.8. I think that's still within normal range. Anyone know?

kimb
01-26-2007, 11:50 AM
I think so, that is part of your red blood cell count. Hemocrit should be around 38-44.
Kim

mnjodette
01-26-2007, 11:57 AM
Yup - Hemocrit is 40.

mnjodette
02-07-2007, 07:46 PM
Still having chest pains and shortness of breath. Seeing rheumy tomorrow - she moved my appointment up. Got LOTS of questions for her. I've read so many articles on recurrent pericarditis, I feel like I could give a lecture. And, I'm sooooooo tired again. By mid afternoon I could just lay down and sleep, my eyes feel like they're all puffed up, and I getl feverish-feeling. And, the neuropathy in my leg is worse again - nerve pain is back often now; limp all the time. What IS this?!? Where is this remission I keep hearing about? It's been 9 months and counting. I just HATE this evil disease. :evil: (Sorry to be such a big baby - I know it could be so much worse.)

Jody

MARYCAIN
02-07-2007, 08:51 PM
Jody, I wonder if the cold weather makes the neuropathy worse? The nerve pain has been giving me fits for the last few days - it seems to have gotten much worse with the severely cold weather - the neurontin doesn't seem to be helping at all now - I'm seriously considering calling the pain specialist and asking for a nerve block

mnjodette
02-08-2007, 10:43 AM
Marycain, I hadn't even thought about that. The weather is sure extreme here. I'll bet that's the case. Saw my rheumatologist today - we're working on a whole new protocol for things. I'll post more about it as I learn more. I will be using some stronger pain meds for a while, even if all they do is mask the nerve pain. Just can't stand this.

Jody

MARYCAIN
02-08-2007, 10:50 AM
I've developed such a high tolerance for pain meds, even the high dose fentanyl barely phases me anymore. But if it doesn't improve soon, I'm definitely calling the pain doc - last time it got this bad, they did a nerve block. I hope your doc is able to come up with some ideas - please me know if you learn anything.

mnjodette
02-08-2007, 12:27 PM
I hope you find some answers, too, Marycain. Managing pain is so important to keeping down your stress level. Take care.

Jody

mnjodette
02-10-2007, 05:30 AM
My hubby and I met with my rheumy for well over an hour. She listened to all of our questions ( a very long list) and was overall very responsive. I think she really heard that we're frustrated with my lack of progress with pericarditis. I've read that it can go on and on, so I know I'm not alone. Still, it's really limiting what I can do. So, she scheduled a CT Scan to see if there could be any underlying causes and to see if my pericardium is thickened at all. CT Scan was normal - yippee! Now, she's talking again about sending me to a rheumatologist at Mayo Clinic who specializes in just such things. She's emailed him and is waiting to see if he'll take me as a patient. He is on of the doctors working on a Rituxan protocol to get it FDA approved for lupus. She thinks I'd be a good candidate for Rituxan. If that doesn't happen, we make bite the bullet and just take me off prednisone (slowly) and see what happens. I have no organ involvement, so the danger is only that the pericarditis will get worse (no to mention othey symptoms, I suppose.) I'm still on imuran. We talked about colchicine and that is also another step to try (she's open to that.) Wish there was a faster way to deal with this. I just want to breath and move normally and not have stabbing pain in my chest everytime I exert myself. So that's the latest. Thanks for giving me a place to put my thoughts together.

Jody

MARYCAIN
02-10-2007, 09:26 AM
I'm glad you had the opportunity to have a long discussion with your doctor. I'm interested in why your doctor thinks you would be a good candidate for Rituxan - it's my understanding that since those two lupus patients died, the drug manufacturer is recommending against any off-label use of the drug for lupus, and the insurance companies will not cover the drug off-label. The only clinical trials I'm aware of with rituxan and lupus are for lupus nephritis and for "refractory" lupus (meaning moderate to severe lupus which has failed to respond to any other available treatments). Although my doctor had discussed rituxan at one point, my insurance company wouldn't pay for it, and I wasn't eligible for the clinical trials going then because of history of blood clots and previous stroke. My doc is no longer using Rituxan off-label for lupus because of potential malpractice liability issues. Do you know what type of protocol these doctors are using and what the exclusions are?

mnjodette
02-11-2007, 07:09 AM
I don't know a lot about the protocol that the Mayo is using for Rituxan. I asked her about the use of it since those two people died, but she still thought I might be a good candidate and that the drug is still safe. However, I'm guessing that her experience with it is primarily from her previous practice when she was using it for RA. However, the doctor at the Mayo has done some research on recurrent peridcarditis and lupus (I looked him up on the web and read his papers - as much as I could understand.) My rheumy may think he's a good fit for a referral just for that reason, and the Rituxan may not end up being part of the picture at all. I'm taking a wait and see attitude and will not be a part of anything that will be a high risk for me. I appreciate your input, Marycain. It really helps me to form good questions. Thank you, thank you, thank you!

Jody

MARYCAIN
02-11-2007, 07:57 AM
I guess that was my concern - whether there was enough benefit to you to justify the risk of using Rituxan, when there might be other alternatives like colcichine that are already available. I think sometimes researchers get so excited about a new drug or procedure that they forget real people are part of the equation, not statistics, or lab mice. If they do end up recommending Rituxan - kkelly and butterflyRN have both taken it, and I'm sute they wouldn't mind up responding to a PM about the details.

I hope this doctor will take you as a patient - maybe someone who deals with recurrent pericarditis can get yours under control - I know you must be thoroughly sick of it by now! I also hope you get some warmer weather soon - living in a deep freeze can't be good for your joints.

mnjodette
02-11-2007, 03:24 PM
Thanks, Marycain. Yeh, the cold weather is really not good. I've been feeling just lousy. The stress of dealing with my Mom's condition can't be helping either, I'm sure.

Marycain, you had some good info about Rituxan. Can you send me the links to the info you've found? Or at least point me in the right direction? I meet with my rheumatologist again on Tuesday and I'd like to be armed with some good questions. She's very responsive. She says "you drive the direction of your treatment-it's your body" so if I want to stop prednisone and wing it, take colchicine, whatever - as long as it's truly not contra-indicated for my condition, she'll go for it. I trust her as a doctor, however, and don't want to press for anything unless I've done my own research.

Thanks for the help and support.

Jody

MARYCAIN
02-11-2007, 06:49 PM
Jody, let me do a little research for you tomorrow and I'll post some links, etc.

mnjodette
02-11-2007, 08:40 PM
Thanks, Marycain. I appreciate the help.

Jody

MARYCAIN
02-12-2007, 12:48 PM
Jody, I decided to do a little in-depth research on the pericarditis issue, and I was more than a little surprised by what I found. For starters, there is fairly convincing research (going all the way back to pre-1990) that suggests treating pericarditis with steroids may actually be the wrong thing to do in most cases. Treatment with steroids may prolong the course of pericarditis, and seems to be a definite contributing factor in the recurrence. According to some recent studies, the patients who were not treated with steroids had fewer recurrences over a long follow-up period than patients who were treated with steroids. When steroids are given with colchicine , it seem to negate some of the effects of colchicine, so the combination steroid therapy is LESS effective than
treatment with colchicine alone, or colchicine in combination with ibuprofen. I found this really interesting, since it seems to run counter to the treatment recommended by many rheumatologists. But the theory is backed up by a lot of solid cardiology research, including placebo-controlled double-blind studies, which are generally considered the most reliable. According to the
11/16/06 report of the Task Force of the European Society of Cardiology,"The treatment reported as the most effective in recurrent pericarditis is colchicine, which determined a drop in recurrences in difficult-to-treat patients (citations omitted) .... The recommended dose is 2 mg/day for one or two days, followed by 1 mg/day."
http://eurheartj.oxfordjournals.org/cgi/content/abstract/15/1/120

Part of the problem with steroid treatment is the issue of "rebound inflammation" which can start to occur with steroid tapering or withdrawal. A second issue is that low dose steroid treatment appears to just suppress the pericarditis symptoms, without actually healing the underlying inflammation. In other words, the inflammation doesn't really go away, the patient just doesn't feel it because the symptoms are being masked by the steroids. As soon as the steroid dose lowers, the symptoms come back. This leads to the problem of steroid-dependent pericarditis, and re-starting the steroids just continues the cycle. So the current thinking among cardioologists is that steroids are the last choice in treating pericarditis, not the first, and should be reserved for severely symptomatic patients who have not responded to other treatments.

IF steroids are given, they should be given not in low doses, but in high doses for two to three weeks, then tapered off over a couple of months, During the taper, therapy with other meds such as colchicine should be started, and NSAIDs given to manage symptoms. But all this research strongly suggests that continuing to manage recurring pericarditis with low-dose steroids is the worst treatment choice, so I think this is something you
really need to bring up with your doctor. Even though you may not be concerned because the steroid dose is low - the side effects are cumulative when you take steroids for a long period. And it seems to be setting you up to have the same thing happen over and over, so you need to do something to break the cycle.

According to the current cardiology research, the recommended first line treatment for acute pericarditis is NSAIDs (ibuprofen, indocin, toradol, orudis and so forth). People at risk for gastric bleeding may need to something to protect their stomachs. For recurrent pericarditis, the most effective treatment approach appears to be colchicine, starting with a "loading" dose for two days then dropping to a regular daily dose. Two different sets of long-term clinical trials - COPE (Colchicine in Acute Pericarditis) and CORE (Colchicine in Recurring Pericarditis) confirmed that colchichine is efffective, safe and generally
well-tolerated - the most common side effect reported was diarrhea. Imuran seemed to have very limited effectiveness in controlling pericarditis - although there have been some clinical trials, none of them showed promising results - and combining Imuran with other immunosuppressive drugs significantly increased the risk of side effects. So this doesn't appear to be a good option either. If you go to your web browser and just type in - colchicine pericarditis - you will come up with a lot of references, including some Mayo Clinic articles on pericarditis. I didn't post all the links because there were just too many.

I did find some information about a clinical trial at Mayo for Rituxan, but it was for lupus nephritis. I did not find any information on
whether Rituxan has ever been studied in connection with pericarditis. It may have been - it's just not reported in any of the medical journals I have access to. I did find multiple reports of fatal infusion reactions from Rituxan which rang some alarm bells - if you have a history of serious allergies or allergic reactions - this might not be a good drug choice for you. There were also some reports of potential cardio-toxicity associated with Rituxan, including a couple of case reports of constrictive pericarditis. So this is something you would also want to ask about if considering Rituxan. And since it's not approved for SLE - you definitely want to find out if it is even covered by your insurance.

Here are some links to articles about Rituxan that might help -

http://clinicaltrials.mayo.edu/clinicaltrialdetails.cfm?trial_id=100322

http://www.medicinenet.com/rituximab-injection/article.htm

http://www.nhlcyberfamily.org/effects.htm#Rituxan

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/203423.html

I know this is long, but there wasn't any real way to summarize all this so it would make sense. Honestly, after researching this, I'm very concerned by the steroid use, and I think you probably need to bring this up with your doctor soon. This seems to be an issue where the cardiologists haven't educated the rheumatologists, so they are not on the same page. But after this research, your situation is more understandable - your experience seems pretty much on track with what the research found about low-dose steroids. I hope this helps you formulate the questions to discuss with your doc - send me a PM if there was anything I didn't explain well. Trying to translate the jargon into English is easier said than done sometimes.

Good luck with the doctor!

mnjodette
02-12-2007, 02:03 PM
Wow - great research, Marycain. I can't tell you how I appreciate this. Your ability to find these things on the web so quickly is really a gift. I fumble around and find links, but never know which is likely to contain what I want (and then there's the question of whether or not I'll be able to understand what I find!) This will really help me to have my 'ducks in a row' when I go to the doctor tomorrow. I'm hoping the Mayo referral will come through. After more research about the doctor that's been recommended, I think he will just be looking at what works most effectively for recurrent pericarditis - he's NOT focused on the Rituxan research they're doing at Mayo. He's just a top notch rheumatologist with a focus on autoimmune diseases. And, he's done specific research on pericarditis in lupus patients. Sounds like 'he's the man!' I think the Rituxan idea was just something my local rheumatologist threw out there. Thanks again. I'll send you a PM if I have any other questions, and I'll post anything good I learn on the board (I know there are others out there struggling with the same thing!)

IloveHistory
02-12-2007, 02:29 PM
Hi Mnjodette

I've never had Pericarditis, so I'm afraid that I can't give you any advice or information, sorry, but I just want you to know that I'm sorry that you're having to go through all of this (I know that Pericarditis is very painful :() and that you are in my prayers.

I hope that your referral comes through and that the doctor will really be able to help you!

Good luck and God bless! :)

mnjodette
02-12-2007, 04:51 PM
Thanks for the support, Ilovehistory. It's nice to know I have good thoughts and prayers coming my way!

Jody

mnjodette
02-13-2007, 07:31 PM
Got my referral to Mayo Clinic - just waiting for them to call with a date. My rheumy expects it will be soon. I'm anxious for some answers, so this is good news. Bad news is my liver function test showed inflammation so they need to back me off the imuran. And, another test showed some suspicious readings for my kidney function, so I had a urinalysis done to be sure there's no protein there. I'm hoping those results show a big nothing and that it was just a test 'fluke.' The party never ends.......

Jody

kimb
02-16-2007, 08:29 PM
Jody- Im back from Hawaii-
I am so glad to see you are on your way to get some answers.....
I will see my Rheum. next Tues. Had my liver panel done today, with c3,c4, anti dna, and other tests. I am ready to put my foot down with all this pericarditis mess also!!!
So the dr. you are getting a refer to is a rheum? or a cardiologist?
Did your dr. change any of your meds, until then?
Have you gotten any type of relief lately?
I am going to have the rheum talk with the cardio so we can have a plan.
Hoping you are feeling better, cant wait for you to get this under control!


MaryCain- THANK YOU!
for all the info you posted. I am in the same boat as Jody, but I am on colchicine....have had pericard. reoccur at least 8 times in the last 20 months! I need some answers also. (taking-Methotrex. 15mg, Pred. 18mg, Colchicine 1.2mg daily, Protonix, folic, and iron)
I am very curious about elevated white blood cells and fever with pericarditis.....I asked my rheum if it was possible I had an underlying infection, but he said no. Do most people with pericard. also have fever, and elevated wbc? My pericardium is already starting to thicken. That worries me. The last few times I had pericard., I didnt have any other lupus symptoms, and dr. says labs also show no lupus activitiy. So I guess it is just this I am fighting right now.
Thanks again for all your support and information.
Kim

mnjodette
02-16-2007, 08:37 PM
Welcome back, Kim! Hope you had a fabulous time - you'll have to email me the details. Let me know how you doctor's appointment goes.

Mayo appointment is March 5th - - but I could be down there more than one day, apparently. I'll have to find out more about that. My appointment is with their rheumatology department. My doc here thought that was the place to start, and then they can bring in cardiology when/if they decide it's needed.

I've been very interested in colchicine, but it sounds like it hasn't been the magic bullet for you, Kim. Hope there's something that will make a difference for us. I'm very concerned about continued use of steroids and how little that seems to be doing for the pericarditis (and the fact that it may be making it worse.)

I'm keeping my fingers crossed that Mayo will finally help me solve this puzzle.

Jody

MARYCAIN
02-17-2007, 05:05 PM
Kim, the more I read about pericarditis, the more I wonder why more research has not done on how to manage pericarditis in lupus patients -it seems to be a real health issue for us, but it's almost impossible to find information. And most of the research seems to involve people who have "infective" pericarditis (viral or bacterial) or "idiopathic" pericarditis (no known cause). The people with inflammatory pericarditis and other medical conditions seem to be left out of most of the research. And there seems to be a big disconnect between the rheumatologists and the cardiologists over the best treatments, especially on the steroid issue. But all the research seems conclusive that using steroids predisposes the patient to a recurring form of pericarditis, especially if steroids are used to treat the first attack (called the "index" attack if you are discussing relapsing or recurring pericarditis). And the research seems to indicate pretty strongly that colchicine COMBINED with steroids is less effective than colchicine by itself - as though using the steroids somehow counteracts the benefits of the colchicine. So that may be part of the issue in your situation. Although I'm on prednisone too, and the colchicine did seem to work for me. But I also get pulsed IV steroids every month, so that's probably a factor too.

There were some studies I ran across that combined colchicine with methotrexate, or colchicine with imuran, but the results were inconclusive - and the patient groups were fairly small. And the "shotgun" approach of trying several meds together seems to result in a higher incidence of dangerous side effects without any definite benefit to the patient. It looks like an area where they need a lot more clinical evidence to back up the treatment recommendations. The combination of colchicine and NSAIDs (aspirin, ibupfofen or indocin) seemed to be effective but has safety issues of its own, especially GI problems.

I also read some articles suggesting that "idiopathic recurring acute pericarditis" (IRAP) - might be a separate disease, probably some sort of autoimmune disorder. The theory was interesting, but it didn't seem to offer any new ideas for treatment.

Fever and elevated WBC are very typical for "acute" pericarditis, along with chest pain or tightness, pericardial rub and typical EKG changes. According to the research most cases of acute pericarditis are either viral or idiopathic (meaning the cause isn't known). But doctors think many of the idiopathic cases may actually be related to some type of viral infection. Among the viral causes of pericarditis, enteroviruses are the big offenders, especially coxsackie virus. Problem is there is no good way to test for all the possible viruses, although a test for coxsackie antibodies shows high levels in some people with pericarditis.

Kim, what concerns me about your situation is the fever. Because you are on prednisone - the elevated white count could be caused by the prednisone itself - it can run your white count up - so can NSAIDs. Other things that can affect your white count are the time of day the sample is drawn, eating a heavy meal beforehand, exercising, or being under stress. So a small elevation in the WBC might not be anything to be concerned about - a big one should be checked out. And because there are different types of white blood cells, each of which has a specific purpose, it's important to know if the white count is increased overall, or if the elevation is due to a particular type of white blood cell. So you need a white blood cell count with a differential - which measures the percentage of each type of blood cell in a sample and then uses a formula to calculate the total number of each. Different illnesses can produce increases in different types of white cells - a high number of lymphocytes might mean an infection but a high number of eosinophils could indicate a serious allergic reaction. And having a lot of one type of wbc but almost none of another could indicate a blood disorder or an immune deficiency. The differential is important, so if your doctor is just saying you have an increased white count, you may want to ask about the differential.

The concern is the prednisone and the fever. In most patients, prednisone suppresses fever, so any fever, even low grade, in a patient on steroids is a cause for concern. Prednisone normally suppresses lupus fever too, so when someone on prednisone develops a fever, it may mean an infection somewhere. In fact, my rheumatologist views any fever as a probable infection until proven otherwise - because of the prednisone. The fever might not necessarily be related to the pericarditis - it could mean a latent infection somewhere else, but it definitely needs to be evaluated.

Has your doctor ever discussed a gallium - nuclear scan with you? It is an expensive test, but basically non-invasive, and with your recurring symptoms, it might be worthwhile. Basically it involves an IV injection of a small dose of a radioactive "tracer" which binds to any tissues where there is a big accumulation of white blood cells. After 48 to 72 hours, you go to a nuclear medicine lab and get a scan, which looks for any areas where the tracer shows an "uptake" or hot spot. And it is more sensitive than a c-reactive protein at picking up infection. This might not be a test your rheumie feels comfortable ordering, so you might want to discuss it with your cardiologist or your primary care doctor. There might be reasons it wouldn't be helpful, but it seems like you may need to push your doctors to be more aggresssive in figuring out what is going on. Especially if you are starting to develop some pericardial thickening -

Hope you can get some answers soon!

kimb
02-17-2007, 10:02 PM
MaryCain, again, thanks for such deep information.
I usually only had fever with the pericarditis. Before my lupus diagn., in 2005, I did have fevers.
While having the symptoms of pericard., the fever usually subsided when the prednisone was increased. But so did my other symptoms.
The nuclear scan you mentioned, that would be while symptoms are present, right?
You are right about the rheum and the cardio. and other doctors getting a plan together.
One says this, the other says that. My cardio. feels I should increase my colchicine,(while my internist believes it is to toxic, and would give me severe diarrhea)-the final answer this time-my rheum. increased my methotrex. and prednisone. so, one out of 3 choices. I, myself would take the diarrhea for a week or 2,(if I had the reaction)rather than the increase of pred. Seems my only problem is tapering the pred, and getting the pericarditis as a result of the taper. And so, this is the vicious cycle. Basically, I need to get effective treatment for the pericard. without increasing the pred!
Here is another fun fact I have. My chest xrays, and ekgs are almost always normal. I have only had the pericardial rub twice. Evem my echocardiograms show little pericard. evidence. Even with acute pericard., do you think I need to just get through the pain of it? without increasing pred? My rheum. mentioned Celebrex......? what do you think of that? I take protonix to keep my stomach under control.
DId you take the colchicine for pericarditis? and what was your dose?
I currently take 1 tab twice daily. (talk of 3 times daily never happened)
I am very curious about research in this also. I would sure love to find someone who is trying to figure this out!
Also interesting, the info about how well the combo of pred/colchicine is effecive or not effective......
Thanks.
Kim

MARYCAIN
02-17-2007, 10:38 PM
Yes, the gallium scan would be the most effective when you are actually having the symptoms - to see if there might be some kind of "hidden" infection.

I took the colchicine continuously to prevent pericarditis for a little over a year - started at one tablet twice a day - after six months with no recurrences my rheumie dropped it to once a day, after a whole year with no recurrences I stopped it completely. Before that, I had been taking it during the pericarditis episodes but stopping each time the pericarditis resolved - and of course 2 or 3 months later the whole cycle would start again. So the rheumie wanted me to try taking it continuously - I can't take most NSAIDs because of my asthma, so just taking NSAIDs wasn't an option. So far this time, no recurrence of the pericarditis - but about ten days after stopping the colchicine I had an attack of gout - which I had never had before in my life! Rather than start back on the colchicine I took cherry extract and just waited for it go away.

Since you are on protonix, I assume you have some GI problems which would make NSAIDS a problem. Otherwises, it seems like taking ibuprofen or aspirin is what most cardiologists recommend to actually treat the symptoms. The recommended dose of ibuprofen was around 800 mgs. every six to eight hours, so if you have gastric problems, that could potentially be a big problem. And the potential gastric issues with Indocin are even worse - you would probably need something like cytotec to protect you from getting gastric ulcers on the high dose NSAIDs. And if you're like me, you hate having to take one med to protect you from the side effect of another med.

Since there is a test available for coxsackie antibodies, the next time you get pericarditis, it might be interesting to have your antibody levels tested, just to see if you've ever had the virus.

Since you are already showing some pericardial thickening, just toughing out the attacks probably won't prevent them from continuing to damage the pericardium. Have you an MRI or CT to document how much constriction there is? Because that's something you want to make sure they monitor very closely. I hope your doctors are able to get together and come up with a plan soon.

mnjodette
02-18-2007, 10:02 AM
This is all such great info on the issue, I'm going to print much of it and take it with me when I go to Mayo. Just as comparison to Kim's experiences: I had a fever the first time I had pericarditis (the "index attack?") but not since I've been on prednisone. I experienced pericardial rub the first 3 times but none since. My CT scan was normal (just had that done) so no thickening yet. After the last attack I now have intermittant chest pain on exertion and/or stress. Hurts to lay on my left side. Pain is not as severe as when in an attack, but it just hasn't gone away this time. Cardiologist here talked about colchicine, but my rheumatologist is afraid of it (thinks it's too toxic.) Had to cut back on imuran because of potential inflammation of my liver (bad LFT last time.) Don't know if it's doing anything anyway.

I'll be at Mayo in just two weeks, so maybe I'll get some answers. First, have to get through my Mom's funeral....

Thanks for the great, in depth info Marycain. As always, you're the greatest.

kimb
02-18-2007, 10:44 AM
Marycain-
My dr. put me on Protonix as a preventative. I didnt have any stomach problems prior to the onset of all these meds. I occasionally get a crabby tummy, but...not often.
We talked about other NSAIDS in the past, but at the time, I was on blood thinners for clots in my upper arms and lungs.(they believe they came from a pic line) Since I have discontinued the thinners, nsaids may be something to check into.
I am interested in these viruses you talk about. I have wondered about something like this as an underlying problem. Since April of 05 when all this began, I have been on pred. The only problems I have encountered since then is the tapering and pericarditis as I mentioned before. This makes me wonder.....I will ask my rheum again about this and the viruses.
Cherry juice does work for gout, I gave my husband some once. Maybe I should drink some when the pericarditis comes around.....?
What do you think of Celebrex?
Kim

MARYCAIN
02-18-2007, 11:56 AM
I don't know if cherry juice would work for pericarditis or not, but my dad swears by it for overall health, and he's 87 and still plants a big garden every year-so it probably wouldn't hurt. LOL

I have mixed feelings about celebrex - I think it was way over-marketed as a "magic bullet" for arthritis pain and a lot safer than "traditional" NSAIDs. It does have a better gastric safety record - but it also costs a lot more than things like ibuprofen, and from an anti-inflammatory standpoint, it's not any more effective than the older drugs. So it might be a good choice for someone who gets stomach problems from standard NSAIDs. And it does have some potential drug interactions with methotrexate - that might be an issue for you with any NSAID, so it's definitely something for you to discuss with your doctor. My big issue with celebrex - and the reason my rhuemie doesn't prescribe it for lupus patients - is how much it actually increases the risk for heart attack or stroke. Since having lupus hugely increases our risk for having heart disease anyway, I'm leary of adding a med that increases that risk even more. I'm also suspicious of some of the research - the studies sponsered by the drug manufacturer didn't show any significant increase in heart attack risk, while studies done by the National Cancer Institute and some other groups that weren't sponsered by the company DID found a higher risk of heart attack and stroke in people who took celebrex. S, personally, i think the jury is still out on the safety of celebrex for lupus patients. But Quarterhorsegal (Laura) is a pharmacist, so she would have the most info about celebrex, and how safe it is to combine with the MTX - you might send her a PM.