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Posted 1/5/2014 4:36 PM (GMT 0)
Hello one and all!

Sometimes I find myself just saying it would be great to talk to someone who really understands. I hope to be both supportive and friendly.

So many illnesses over the years... Felt soooo guilty thinking I was LAZY. Finally it's Lupus, now all the pieces fall into place.

The question:

Have you been so seriously ill that your life was at risk due to Lupus Flare?

Me: Yes several times!

Thank you!
Posted 1/5/2014 5:29 PM (GMT 0)
Oh yes, I have been hospitalized twice with Lupus flares and needing blood transfusions. It's not fun.
Posted 1/5/2014 5:30 PM (GMT 0)
I haven't, but several people who posted on this forum have been that ill. So yes, there are people here that understand what it can be like.
Posted 1/5/2014 11:38 PM (GMT 0)
No, thank goodness. Right now I'm battling a nasty cough after being exposed to pneumonia. I hope it doesn't get any worse.
Posted 1/6/2014 1:54 AM (GMT 0)
Yup...I was very unstable for awhile. Haven't been hospitalized in 11 months now. Its kind of nice. :D!!
Posted 1/8/2014 12:09 PM (GMT 0)
I am in the hospital now. I am hoping to go home today. I hope this is my last time. Back in August I was here for a week.
Posted 1/13/2014 3:33 AM (GMT 0)
Normally most hospitals transfuse patients with a hemoglonin of 8 or lower. As well as the oncology treatment centers do. I have severe anemia and require at least two to four units of blood monthly.

Getting a blood transfusion can have side effects so it's possible that the Dr is trying to raise your hemoglobin with the iron. I would ask your Dr what is causing your anemia, that will make a difference as to whether to transfuse or not.

In my case my lupus was causing my anemia, then once I developed Leukemia my bone marrow has difficulty producing red blood cells. My iron levels are Totally normal. Therefore, I'm never given iron, and my iron levels must be watched, so that I do not get iron over load from all the blood transfusions I received.

I would suggest that your Dr refer you to see a hematologist regarding your anemia. They are the best in dealing with this aspect of lupus. If I can be of more help just ask away.

Hugs,
Barbara
Posted 1/13/2014 3:44 AM (GMT 0)
Hi Gabby,

To answer your question YES, I can't tell you how many infections that I have had that as made me VERY sick.

Two years ago I had pneumonia so badly that I ended up on a vent and they informed my family that I wouldn't live thru the night. My hubby informed them that I was a " TOUGH OLD BIRD" and would pull thru. I did.

I just got out of the hospital last night and I've again been critically ill with pneumonia again. Because of the leukemia I have I've been told that many of us with type, die of infections before or cancer ends our life. Having the lupus/RA with this in addition is very difficult for my docs.

Each lupus patient varies from one another. Some have so mild cases they do not require meds. Then there are patients like me I'm so severe that my Dr's have no idea how best to treat me. I have attempted EVERY drug out there to treat lupus except Gold injections. NOTHING WORKS, EXCEPT HIGH DOSE PREDNISONE.

I've been on prednisone for 13 years now. If you were you average the daily amount taken over the years my daily dose would be 40mgs. I'm currently being tapered avk down to 20mg. I feel great around 50mg daily. However, the side effects from it is destroying my body. My bones are so brittle I've fractured 12 ribs since Feb 2013 thru today.

I hope and pray that you are able to get on the correct meds and start feeling really better right away. Please feel free to ask any questions I'm sure one of us will be able to answer it.

Hugs,
Barbara
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