Vasculitis and Lupus

I have Lupus and my ANA is 1:1280.  It is active and we have not been able to get it under control so far.  I have had to go to the hospital twice in the last two months.  Both times I stayed four days.  One time my sodium and potassium were extremely low and the second time my heart rate was around 170 when I stood up or walked a short distance (any type of activity).  After three days and many tests the cardiologist said my heart was very strong but I have vasculitis.  He has put me on digoxin and motoprolol both of which I have to monitor and take smaller doses of because the dose he wanted me on lowers my blood pressure too much.  I still have high heart rates at time, usually when I am moving around.  My Internest has me on 10mg. Prednisone, Celebrx and 50mg. Imuran.  The Cardiologist tells me this will go away when the lupus is under control.  I am concerned because he originally said I was fine and was releasing me from the hospital and then my Internest came in and said you can't go home with such a high heart rate.  Somewhere inbetween the two and the Cardiologists P.A. vasculitis came up.  It has been since January 13th. and I am still unable to do almost anything other than sleep or sit around.  I am worried they missed r misdiagnosed something.  Please help!  He didn't see the vasculitis in the catscan or the unltrasound.  I feel they are guessing.  Is vasculitis common "around the heart" for lupus patients?  Should I get another opinion?  Please someone help!
Thank you

[Jerry_NJ]

I post mostly to send my best and to bump your post back to the top.

I have no experience with most of what your post presents, maybe someone will pick up on the soon.

More information on your HR may be helpful, has it slowed down at all?  What is it when your are totally at rest, I mean sitting down quietly for at least 15 minutes before measuring.

Do you feel any irregularities/arrhythmia?  

[ireneo]

Thanks Jerry for bumping this up. I did add my 2 cents worth over on the heart disease board. She also posted on the lupus board. I certainly hope someone will be able to help.

[Joni686]

Thank you for bumping it up for me Jerry.  I didn't realize it worked that way.  My heart rate can go from 60 to 170 depending on what I am doing.  Currently, I am on Metoprolol 25 mg. and the doctor wants me to take one every 8 hours.  I am also on Digoxin 0.25mg. and I take one a day.  I usually take it around 5pm. because my palpatations are worse in the evening and at night and that is supposed to make my heart rate steady I believe.  Part of the problem is I have been sleeping so much since I started these meds and when I wake up I take my BP and it is sometimes 80/45 which I believe is too low.  I have cut back to 1/2 a pill of the Metroprolol in the morning and 1/2 at night with the digoxin still about 5pm.  I think that is better.  My heart rate still stays pretty low now but if I do anything active and I mean like if I went and loaded the dishwasher, my pulse can easily jump up to 140 - 160.  This morning it went up and my BP was still 108/80 whle my heart rate was 135.  It makes me feeling like I'm going to drop to the floor.  I was in th hospital for four days in December with a high heart rate and low sodium and low potassium and then back in in January with high heart rate and high sed rate.  If I got out of bed to brush my teeth the niurse would run in to see if I was ok because my rate would go up to 160 that easily.  The thing bothering me in the back of my mind is my cardiologist said my heart is very strong and not to worry (when I was in the hospital) and he told me the Internest just had to get my lupus under control.  I am taking Prednisone and Imuran and Celebrex to try to do that.  But when I was in the hospital his PA told me I had some vaculitis.  He never said that.  When I went to him a week ago I told him but you didn't find anything in the hospital and he said we did find a little something of vasculitis.  I feel like I don't know the whole story or someone is missing something.  My brother wants me to change doctors or at least get another opinion.  I have been to so many different doctors in the last year and a half I just don't know what to do.
Irene, thank you so much for your note.  It touched my heart as well.  I also looked at your wildlife pictures.  That's a wonderful thing you are doing helping them.
Thank you both so much.  I really appreciate your responses and your bumping me up.  :)
Oh and Jerry, the halter monitor told us I have a "missed beat".  The doctor says it is not dangerous but just more annoying than anything.  Does that sound right?
Thanks

[Jerry_NJ]

As said I don't have any knowledge about much of what is troubling you, but I can say a resting HR over 100 it too high.  I too have a high HR due to AFib, and I take 50 mg of Metoprolol once a day, I may go back to 50 mg  twice a day as my rest HR tends toward 90 when I take only 50 mg.  I think I have some of the same, but less sensitivity, symptoms as you do to Toprol.  It lowers my normally low/normal BP and that can make me dizzy when I stand unless I get up real slow.  However, I do not have the debilitating weakness, I can walk and work, even some house/yard physical work without my HR going over 130.  I had been a "runner" up to a couple of years ago, so I am not happy about my lower physical ability.  

It does seem you have reason to seek additional medical help.  You did mention a few skipped heart beats, that may be sufficient justification given your high HR problems to ask you cardiologist to refer you to an electrophysiologist (EP) to help find out how to get you HR under better control.  Of course you can go to an EP without a referral I suppose, but that's how I got put under the care of an EP for a few months.  I'm back with the cardiologist, I didn't want to take the high power meds that were next on the list for treatment for AFib, and my EP said my case was not severe enough to justify the risk associated with left atrial ablation procedures.

I don't mean to make my response about me, but I share in the spirit of calibrating my advise, little though it is.

[ireneo]

I'm hoping the steroids and extra boost from Imuran will get that vasculitis under control. Is the vasculitis directly on the heart or other parts of the body? From what I read it can take quite awhile to get that cleared up.

Seeing an EP sounds like a good idea. Find out if the vasculitis is triggering the tachy or is it a separate electrical issue in the heart alone. I know lupus can cause some arrhythmias (my DIL has been fortunate so far in that respect).

Take it easy for now. Let us know if you run into more questions (we'll try to answer them if we can).

[Joni686]

Thank you so much for your input.  I really appreciate you taking your time to answer me.  I have never heard of an EP but I am going to look into it.  So far I have not had a heart issue.  My problems started in July '07 with an eventual dx. of lupus.  Just last month it started to affect my heart.  The thing that keeps bothering me is there was no one test that showed I have vasculitis but they decided it (it seems) by ruling other things out.  Although when the PA from my cardiologists office came by to see me in the hospital she was the one to first mention "a little vasculitis".  My Cardio at the time was ready to let me leave the hospital because he said all the tests he did on my heart showed my heart to be strong and that my Internest needed to get my lupus under control.  Then she came in and said no way can I let you go home with my heart rate still out of control.  I still have a concern that I am misdiagnosed.  Ugg!
Oh and Irene, I don't have vasculitis anywhere else.  I know it can show up on your skin but I don't have it there.
God Bless you both and your DIL.
Thanks
Joni

[ireneo]

An EP is an electrophysiologist. They're a special type of cardiologist since they deal primarily with the electrical system of the heart. That would cover arrhythmias and heart block. The EP could tell you if your tachycardia is something in the heart or caused by something systemic (like potassium problems, stress, thyroid, etc.) There are ways to take care of the heart rate. Let's hope you get the answers you need.

[Joni686]

Thanks.  I am going to search for one on my insurance.  My cardio mentioned an electrical problem caused by the lupus (antoher thing that confused me because I think that is totally differnet from vasculitis).
Tonight I have this choking feeling again.  I can't hardly relax because of it.  One doctor said it is because of my blood pressure but I just took it and it is 124/90 and my pulse was 64.  This was at rest and of course on my meds.  But that is low considering what it has been.  Two other doctors told me the choking comes from steroid use.  They say it causes swelling around my face (my face is not swollen right now) but there is swelling on my neck right inbetween those two bones that normally stick out, basically the bottom of my neck/top of my chest area.  Either way, I get this sensation that I am going to choke.  Right now I can't even get comfortable lying down.  Have you ever heard of that happening in connection with BP or with your DIL and lupus?
Thanks Irene.....
Joni

[ireneo]

I know steroids can cause some swelling around the face and neck. I knew a woman years ago that had lupus and took steroids for years. She had that "moon face" appearance. But she never mentioned having trouble breathing or swallowing.  You must have swelling right at the tips of the clavicles (the skinny bones that stretch across the front of the chest from the shoulders). If the feeling gets worse - can't swallow, your tongue feels swollen or you're having trouble breathing - please get to the doctor immediately. No, I haven't heard of mild high BP causing this problem. Take care.
Irene

[BeanBandit]

Hi joni, will you take a look at my lates uestion I posted and see if my other dymptoms sound similiar to yours?  Some of your that I was reading sound similiar to mine, especially ther throat/neck thing.  I'm not sure if your still having problems or not, your post are from quite awhile ago.