My wife was diagnosed with SLE over two years ago. It wasn't until we moved to a very rural part of Oklahoma that this diagnoses was made. She has been progressively been getting worse over the past five years. Recently she has lost a vast amount of blood to where she has had to have 7 units of blood in the past two months. She has underwent two colonoscopys, two endoscopys and most recently a capsule endoscopy. All of these tests have turned up normal. Yet she continues to lose blood and is getting weaker. She has also been shown to be a factor 5 along with the other clotting problems that Lupus holds. She has been to several doctors from here through Texas and no one seems to understand why this is happening or where it is coming from. In the mean time, my angel is suffering and I am at wits end of what to do to help her. She is all I have in the world and if I could take on this devastating condition for her I would at the drop of a hat.

PLEASE! If anyone has any suggestions, please let me know!

Thank you all and may God bless you!

Rich

Where is she losing blood? Internal bleeding?

Have you read this? "In SLE patients with serious brain or kidney disease, plasmapheresis is sometimes used to remove antibodies and other immune substances from the blood to suppress immunity. Rarely, SLE patients can develop seriously low platelet levels, thereby increasing the risk of excessive and spontaneous bleeding. Since the spleen is believed to be the major site of platelet destruction, surgical removal of the spleen is sometimes performed to improve platelet levels. Other treatments have included plasmapheresis and the use of male hormones. Plasmapheresis has also been used to remove proteins (cryoglobulins) that can lead to vasculitis. End-stage kidney damage from SLE requires dialysis and/or a kidney transplant."

Is she seeing a Lupus specialist? There are several drugs and treatments available.

Thank you for your response! We do not know where the bleeding is coming from. The only thing the doctors have been able to tell me is that her tests show the entire digestive tract is normal. The bleeding has got to be coming from somewhere especially with the amount she is losing. I have asked the doctors about hemolitic anemia as where the RBCs are being destryed as soon as they are produced or entered into the body and therefore being flushed from the system in vast amounts. They said maybe that is possible... I am really getting frusterated as I know she is. The latest symptom is that she is passing out cold for a few moments... again, I think it is from the amount of blood she is losing. Also anything she eats comes right back up, but then again, "her digestive tract is normal according to our tests".

I have read the part about having the spleen surgically removed, which I will bring up to them at our next visit. I have not heard about Plasmapheresis however. What exactly is that and how is it done?

Again, I appreciate your help with this and giving me other avenues to cruise down to avoid the pot-holes that are on the one that I have been cruising.

Thnak you again and may God bless you.

Rich

I find this site to be most informative and comprehensive - also isn't sponsored by some third party so it's accurate. Facts About Plasmapheresis | MDA Publications.

Is she under the care of an autoimmune specialist/rheumatologist? If not, she should be.

Are you near a teaching hospital or med school? I realize her Doctor is doing what he/she can but it would seem to me that SOMETHING is being overlooked. Sounds like her quality of life is diminishing and yours, also.

Please keep me informed - this is (as you know) a dangerous disease and time is important.

Is there any lower back pain?

My best friend who was 2 weeks older than me died of lupus and it's complications. In her case she blew up like a balloon as she kept retaining fluids in her system. She did drink a lot of diet soda and in retrospect I am thinking that the soda had something to do with exacerbating her system's autoimmune problems. She also had asthma very bad as well which is basically a problem where the person is dehydrated. The soda was obviously robbing her system of the much needed water.

I would take Andrea to the ER at least once a month. I had taken her about a week before to the ER. The next week she died on the way to the ER while her daughter drove her. This was back in July, 1997.

You have my thoughts and prayers for your wife. Don't give up. There are solutions for this problem she is presently experiencing. The best thing you can do for her is to "watch over" her as much as you can for any signs of something wrong. Don't take the course of wait and see as it could be too late to reverse some new symptom.

We appreciate all of your concerns and prayers.

Unfortunately, we are not close to any hospital that has any technology to speak of. Most of our trips to the more advanced technology is a two and a half hour drive to Amarillo, TX where she is under the care of a Rheumatologist, Pulmonologist and Hematologist. Her doctor here in town is a D.O. Internal medicine doctor and is the chief of staff at our local hospital.

The latest symptoms are that she has an insurmountable amount of pain in her left leg that is extending into her groin making it near to impossible for her to walk. She has also passed out twice now in the past two weeks. This is really starting to get pretty scary.

I appreciate everyone's input and I hope to find more answers along the way... but it looks as if this is going to be a very long row to hoe.

Thank you all and may God bless you.

Rich

I THINK you really need to get a MRI from the neck to just past the groin area.

The lower groin pain bothers me a LOT and I'll tell you why. My uncle was helping his son move and his back started to hurt. He did get an MRI eventually, but it turned out that he had an aortic aneuyism (spelling?) and blood started to accumulate in the lower back. An MRI should pick that kind of soft tissue damage up.

She really has to go and be prepared for emergency surgery.
Have a doc call ahead or arrange a medical transport. In my opinion, you really don't have a choice. Go now!