myocarditis associated with lupus

[pikamom]

I'm 37, female, wondering about lupus and myocarditis. I've been tested extensively for lupus after a bone scan of my hands showed arthritis and the blood tests came back with a weakly postive ANA in speckled pattern and elevated sed rate. The arthritis started at the same time as tachycardia and angina (My EKG's are abnormal during symptoms with depressed ST 2.5 mm) I've had interstitial cystitis for the last 11 years, also get rashes in the summer on my face and arms. The rhuematologist also pointed out that I have levido retularis (spell? all I know is it's a lacey look to the skin on my lower legs) The last time I was in the hospital with heart symptoms I had a fever and the cardiologist drew alot of blood for cultures. Must have come back negative and I forgot about it until seeing the post on sjrogens syndrome and heart block. Now I'm wondering if I don't have a myocarditis caused by an immune disease (interstitial cystitis is an immune thing where my body attacks my bladder, I always have hematuria). I have chronic tachycardia with a resting heart rate of 120-140, this only in the last couple of years and I've increased my exercize and lowered my weight, no change in my heart rate. I now take cardizem. The rhuematologist says I don't have lupus at this time. I don't have my EKG's and don't know what they show except the cardiologist said there were alot of abnormalities and insisted I have the catheterization. It showed a normal heart but he thinks I have coronary artery spasm and an electrical problem. Do you think I could have autoimmune myocarditis? Thankyou.

[Morningdove]

I also have lupus. I believe lupus can affect your heart. I have one cardiologist that say yes and another in the same group says no. I have congestive heart failure,bradycardia, and cardiomyopathy. I'm being treated for this plus the lupus. When this was dicovered I was acting just like you my heart was enlarged, had pneumonia and short of breath. I think you need to be seem by a cardiologist and this taken more seriously.My prayers and thoughts are with you. Good luck

[debanne]

I have been having a lot of problems lately with shortness of breath, tachycardia, weakness, depression, and over all feeling pretty lousy. I have been to the MD twice in the last month with out any change in my condition. My first visit was shown to have a enlarged heart on a chest x-ray, which was looking for pneumonia d/t the sob. I was put on Tequin for a sinus infection, lasix for fluid, and I stopped my HRT, d/t fluid. This helped some but I still am struggling to get air, have no energy, and my MD is not helping me or listening. I am 45 years old, and my sister has now been dx with lupus, and some of my same symptoms, where do I go from here? Thanks

[bettyd]

I enjoyed reading your comments Shari & Terrylynn. I have had Lupus (SLE) since 1982.  To say the least I have learned a lot that is not in the books.  I am lucky in that early on I was told to listen to my inner self. I'm not a goof ball-but I have saved myself some money. Just the last year I have had chest pain. After a couple of bouts with this, I figured it comes from being way too stressed.  Stress has been a key factor in dealing with my lupus.  My meds are-a 15 minute soak in a hot spa (103'), Lotension for high Blood pressure & Paxil for depression. My Dr. said that Lupus (victims) MUST have an afternoon nap or at least a rest. When I have stress-I had 4 kids-I deal with it then sleep or take it very easy for a day to let me catch up to myself. I could go on and on. Please, listen to the inside of you-it takes some practice but it really does work! Remember that as great as Drs. are, they can only treat what we say. ALL THE BEST! betty

[shiri]

Well, I take Plaquenil for the lupus; Inderal for my heart; Losec for my stomach.
You are right. These health problems can be very depressing.
It is so strange to be young and to be worried about your heart.
And I must admit that I am always afraid that my heart may become worse someday soon.
I try not to think about it but it isn't easy.

Take care

[pikamom]

Shiri, how old are you? What other problems do you have with your SLE? I try not to worry about it since they ran thousands of dollars worth of blood tests and they said I don't have lupus at this time. The ANA was weakly postitive with speckled pattern and elevated sed. The way they said it I feel they think I'll get it someday. I have a constelation of problems, from the interstitial cystitis, arthritis, tachycardia/angina, to rashes in the summer and severe depression. My feet are numb but I think that's related to the two back operations I had, don't know if disc disease is related to lupus. The cardiologist said my EKG was "bizarre". My pap tests keep coming back abnormal but I don't have infections or cancer. I have blood in my urine but no infection or cancer. Abnormal EKG's with angina but clear arteries. Arthritis in my hands and I'm under 40. It's just all so bizarre.

[shiri]

I experienced the same thing. I have SLE and about two years ago I started having ECG abnormalities and afibs.
I also had a coronary that showed no ischemia.
And I often wonder if all this can be related to the lupus but the doctor I saw said that it can not be proven.

[shiri]

Well I'm 31 years old.
I have been suffering from lupus like symptoms since 1994.
My major complains are pain upon breathing, arthralgia, dry eyes.
My labo abnormalities are a positive ANA that varies between 1/40 and 1/640 with also a speckled pattern.
A low C3 complement level, sometimes anemia.

In the year 2000 I went to see my cardiologist because I had lots of extrabeats. He did an ECG and it showed a ST depression. This worried him so he did a heart catheterisation.
This showed no ischemia. He couldn't give me an explanation for the ECG abberation.
A few months ago I had an atrial fibrillation. Again no explanation.
So I visited a prof in cardiology at the university to ask him if all these symptoms could be lupus related. He didn't think so and even if they were it can never be proven.
But I still don't know why I suddenly have ECG abnormalities and extra heart beats. I've read that lupus can cause electrical conduction defects but as I have been told it is rather rare.

If you want to ask more questions; please feel free to do so.

  

[pikamom]

Your story sounds very similar to mine. I have those ST depressions that get's them worried and have been told my tachycardia is from an electrical problem. Don't know if that's the same as conduction or not...my resting heart rate is 120-140, but I think it's coming down with the cardizem. Havent had any more chest pain anyway. I just try to get through my days one at a time and make the best of life that I can. Very glad for the computer where I connect with people like you, I don't feel so alone. What meds are you on? Do you suffer from depression? Besides the cardizem, I take elmiron and imiprimine for my IC, remeron for depression, viox for arthritis, neurontin for all those problems, and ultram for pain.

[CCF-M.D.-CRC]

Dear TerryLynn,
It is possible you could have (or could have had in the past) some myocarditis that is causing the tachycardia.  Things that would help confirm this diagnosis would include decreased pumping function of the heart or wall motion abnormalities on an echocardiogram and/or changes in a nuclear stress test that are not consistant with your normal coronaries.  Other blood tests that would help would be a C-reactive protein, sed-rate and other inflammatory markers.  In any case the treatment is the same as you are receiving.  You may also wish to discuss with your cardiologist the possibility of an ablation procedure should you fail to have good control of your heart rate with medications.