Scared

I have had a dual lead St. Jude pacemaker for 2 years now due to AV block, Mobitz, Type 2. This was placed in an emergency situation. Since it was implanted, I have had a real problem with symptoms from my autoimmune disorder (like Lupus) flaring up. Now my Electrophysiologist wants to replace this unit with a bi-ventricular model that is coated with Parylene, said to be good (hypoallergenic) for patients who suffer from allergies. A test kit was sent from the manufacturer with bits of parts made from the materials of the model he wants to use. It was difficult to tell if I had a reaction to the test kit. For one thing, the tape used to afix it to my arm, caused a lot of redness. The indention of the items left red spots, but then, I am not a doctor.

The symptoms of my disease are pretty much controlled by daily Prednisone, which has caused severe osteoporosis. If the new model increases my symptoms, about the only alternative I have is more Prednisone, which means even more bone loss.

There is probably not anyone else on this whole forum who has similar problems, thus no real answer. I am just plain scared and don't know where else to turn....

Thank you for listening.

1 Comments

Allergy test

by Grateful Heart - 2014-12-16 07:12:25


You can do a search in the upper right hand corner of this site. Click on the search tab and type in lupus and some members posts will come up. You can click on them to read the whole thread. Once you are signed into the site, you can private message the members who posted and ask your questions. Not everyone comes to the site daily but I'm sure they would be willing to respond to you.

There is a kit called the Melisa test kit. It is a blood test for mainly metal allergies but covers others as well. That may be easier in your case since the skin tests were not conclusive. Ask your Doctor about it. Take a look at www.melisa.org to learn more about it.

One of my Doctors suggested it to me because I have flare ups around the scar 4-7 times a month and nobody knows why. I decided not to go ahead with the test in my case because I wouldn't have my device removed until the battery goes but it may be helpful to you.

I understand you not wanting to stay on or increase the Prednisone.

I hope this can help and you get some answers. Keep us posted.

Grateful Heart

You know you're wired when...

Titanium is your favorite metal.

Member Quotes

It is just over 10 years since a dual lead device was implanted for complete heart block. It has worked perfectly and I have traveled well near two million miles internationally since then.