Sarcoidosis and Heart Block

Hi y'all. I am normally a lurker here and have gained so much from reading what you all share with each other and now I am hoping someone can help me out.

I was just officially diagnosed with sarcoidosis. Apparently this is what caused me to have complete heart block and caused me to have to have a pacemaker. So I guess it affected my heart as well as my lungs at this point. Anyway.... My pulmonolgist and cardiologist have been working together and have concluded that I will start taking Prednisone and that my pacemaker is going to have to be turned down so that my heart can do more of the work. I have a Medtronic Sensia dual lead and am pacing 1% in the top and 100% in the bottom of my heart. My rate is set to 60 at the bottom.

Things have been working great and I am a bit afraid of it going lower. I don't want to start passing out again! But I was told that my heart can recover from the heart block. The heart muscle itself and the arteries are all in great condition. My problem was completely electrical.

Has anyone had any experience with this or know anything about it?

I am a 44 year old female with no past history of heart problems before this. I had my pacemaker installed September 10 of this year.

Thanks in advance for your help!

Michelle in Texas

5 Comments

Prednisone

by ela-girl - 2007-11-09 02:11:05

Hi, Texas Michelle!

I don't have anything to add as far as experience with your medical condition or anything, but I have been on Prednisone before. Have you??? It's a horrible drug!!!! At least in my humble opinion. I won't even give it to my dog when my vet prescribes it for his allergies (he has severe allergies)!! It made me eat EVERYTHING in sight and I had TERRIBLE night sweats. I would actually have to get up and change the covers in the middle of the night! And I'm of a very small frame and gained 13 pounds in less then 2 weeks! These are fairly common reactions to Prednisone, and I hope you won't have them. And I'm not trying to scare you or anything if you haven't taken it before...I just hate that stuff and had to vent. I haven't looked up your conditions yet, so I don't know anything about them. I know Prednisone is a steroid--why are they prescribing to you? To help with the lungs?


I hope someone else can pipe in with more useful information for you.

Wishing you the best,
ela-girl

Medicaton Side Effects

by SMITTY - 2007-11-09 04:11:04

Hello Michelle,

I can see ELAgirl's opinion of Prednisone is about the same as mine for beta blockers, which I call medicines from hell. Fortunately not all people are affected the same by any given medication. I've had Prednisone prescribed for me on four different occasions since 1960. (Yep, I got my introduction to Prednisone 47 years ago) Back in those days we didn't get printouts of possible side effects but my doctor was kind enough (my wife was his office nurse at the time) to give me a rundown on possible side effects.

One of the side effects is depression and that was his main concern I was already slightly depressed as I had just been diagnosed with Bell's Palsy and the entire left side of my face was paralyzed. Prednisone can cause depression or euphoria and I was lucky, I went the euphoric route. Then over the next 6 months I got abut 98% recovery form the paralysis of my face.

Fifteen years later it was same song, same verse, same doctor, same results. Since 1975 I have had it prescribed twice more, with the last time being in April '07, with these two times being for rashes I developed as a reaction to meds. Again, both times I experienced a euphoria, although I understand depression is a real possibility with Prednisone.

These are certainly not the only side effects possible from Prednisone, so be careful and hopefully your results will be as good as mine. But as you can see with this medicine it can be different strokes for different folks.

As for your hearts electrical system I know from experience (by the time anyone lives as long as I have they will have had many experiences, some good and some not so good) that slow heart rates can come and go on their own. Some 15 years before I got a PM I had a heart rate in the upper 30 to low 40s for several months. Although I never passed out I certainly thought I was going to any second a number of times. Then, for reasons I'll never know my HR returned to it's normal 55 to 60 and stayed there until last year when it went into the mid-forties and has stayed there. Since I got my PM in 2000 a low natural HR is no longer a concern.

To me the really bright spot about the entire low HR returning to "normal" even though I have a PM is that my PM just sits there and does nothing but monitor my heart function. When it is on monitoring duty it uses very little battery power which means the battery life can go from the predicted <10 years to 15 or 20 years.

So take it easy and I wish you the best.

Smitty

sarcoidosis

by patpeter - 2007-11-09 07:11:21

hi Michelle,
I think that sarcoidosis is an autoimmune disease and as such they treat the symptoms of the disease process. I also think the lungs are the major player with this disease and inflammation is the hallmark of the autoimmune diseases. Prednisone is the "big gun" for inflammation and probably it will help you and your symptoms. Side effects are different for everyone and a lot depends on how much you take , with higher doses perhaps causing more side effects. You just have to see how you react. I wish you the best a nd I hope this helped a little. Let us know how you are.
Pat

fellow sarcoid

by dcrojas - 2007-11-10 01:11:41

Hi Michelle,
I was diagnosed with Sarcoidosis about 5 years ago, and had part of my right lung removed. I was on Pred for about 3 years. It does have some nasty side affects although I was lucky and didn't do real bad with it. Unfortunatly it is one of the few choices for treating sarcoid. It reduces inflamation and depresses the imune system and shuts down the autoimune process which has gone awry and is causing the problems. There are a few other drugs around but their side affects are just as bad or worse. Share your concerns with your doctor and try and keep the dosages as low as possible. My doctor would dose me up to about 40mg a day and then ease me down to about 10mg then 5mg and then finally 5mg every other day. It worked for me.
I was finally taken off the prednisone about 11/2 years ago but was recently diagnosed with SSS and had a pacemaker put in about 2 months ago. My EP told me it was probably caused by the Sarccoid. And I may have to go back on the Prednisone.
I'm not sure how the sarcoid caused the SSS I'm sure it has something to do with the granulomas around the heart but I'm not sure. Anyway good luck with the Pred don't fear get the sarcoid under control and then work with your doctor to manage the prednisone. Let me know if I can help and welcome to the club.

Oh one more thing my EP told me my battery would probably not last as long because of the sarcoid--go figure
DC

Thanks y'all

by TexasAngel - 2007-11-10 12:11:40

Thank you all for sharing your experiences and words of wisdom with me.

They are going start me out on 40 mg of Prednisone a day for a month and then start cutting it down from there. I will be taking 20 mg and then 10 mg, etc. This will be for a full year. They also mentioned putting me on Methotrexate in the future.

They are hoping that by turning down my pacemaker that my electrical system will eventually kick back in after some of the sarcoidosis inflammation has gone away and that will extend the life of my pacemaker battery.

It's just that I have started feeling normal again and don't want to have to go through an adjustment period again. I am tired of having new normals! ;-p

Smitty, I am hoping to experience the euphoria part! My husband would be much happier if that is the case. :-) Especially since I am already taking Zoloft for depression!!

I will let you know what happens.

Thanks again y'all!!

Michelle

You know you're wired when...

You trust technology more than your heart.

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