Living with Lupus

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JJ1226
New Member


Date Joined Nov 2013
Total Posts : 12
   Posted 11/18/2013 1:04 PM (GMT -6)   
Years ago they ran all kinds of test on me in 1997 even after months and months of test they decided to do a biopsy on my kidneys that's when they knew for sure that I had Lupus.  The rhemy that I had gone to sent me a letter telling me that I had lupus, along with a follow up visit.  I had no idea what Lupus was at the time.  At the follow up visit, he gave me a perscription for prednisone 60mg, and very little information about lupus.  I recall asking for pamplets on lupus, he had none to give me.  After the visit with that doctor I went to my library.  I spent hours there that day, I was overwhelmed by all the information there was no way I could absorb it all.  I left the library, got in my car and cried, I felt like I was in shock.  How did I get Lupus? Is what kept going through my mind....

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/18/2013 1:45 PM (GMT -6)   
Lupus happen when a genetic "switch" turns on in our bodies.

No one in my family has lupus, but my mother has a different autoimmune disease called MDS and diabetes.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

JJ1226
New Member


Date Joined Nov 2013
Total Posts : 12
   Posted 11/18/2013 3:28 PM (GMT -6)   
Joy, Thank you for your reply. A genetic "switch turns on in our bodies", I had never heard of that until now. Makes sense, so research needs to find out what turned on the "switch" so it could be turned off. Thats what I'm thinking now. No one in my family has lupus but me, one sister has fibromyalgia, which I heard was like a cousin to lupus. Joy do you have lupus?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/18/2013 3:32 PM (GMT -6)   
There is, of yet, NO scientific evidence supporting a genetic cause for Lupus or other auto-immune illnesses. Some families have noticed that they have a lot of auto-immune-type illnesses in their family, but, as I said, no scientific evidence has been gathered to support this.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/18/2013 4:18 PM (GMT -6)   
Yes, I have systematic lupus, JJ.
I also had one allergy doctor who told me our antibodies (disease fighters) suddenly see healthy cells as invaders and start attacking them.

*I was just repeating what one doctor told me, Lynnwood.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 11/18/2013 10:04 PM (GMT -6)   
Hi JJ:

I've had lupus for 26 years now, and they really don't know what causes lupus, that's why they don't have a cure for it. Joy is correct in with Lupus our bodies basically attacks itself. It looks at our cells and attacks them and makes us sick.

Lupus can be controlled and varies from person to person. Some folks are very mild with their disease and others it's so bad it's life threatening. It can become quite and some folks can even come off all medications for periods of times, but they are NEVER cured of the disease.

The best thing a person can do is make sure that their disease is well controlled. Which may mean medications or not. Plus limiting stress in your life, getting plenty of rest, eating healthy, and if possible getting some exercise. If we don't do these things, then usually a flare up will come on. Lupus can sound overwhelming and it certainly can feel that way a lot of the time. However, you've found a great place here with many people who are willing to listen and help out with advice.

Try to take care and rest and leave the stress behind if you can. If you have any questions, please feel free to ask away. Oh, one other thing, you'll often see many lupus patients also have RA, Sjogrens, Raynauds, and Fibro. All of these conditions aren't the same, but have similar traits, some more than others.

Hang in there and looking forward to getting to know you better.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/18/2013 10:16 PM (GMT -6)   
couchtater said... "I also had one allergy doctor who told me our antibodies (disease fighters) suddenly see healthy cells as invaders and start attacking them."

The Dr is correct, that is what happens. And no one yet knows why our immune system gets angry at everything like that.

Just not linked to genetics or heredity. (yet)

JJ1226
New Member


Date Joined Nov 2013
Total Posts : 12
   Posted 11/18/2013 11:46 PM (GMT -6)   
Lupus attacked my kidneys in 1997. I woke up that morning with my feet the size of footballs and my legs were huge, I could hardly walk. I went to my doctor, from there a nightmare of tests, during this time the only meds they gave me was fluid pills. Four months later and only after a biopsy (as I already posted) then came the rhemy and the prednisone. I found a better doctor who I believe saved my life. Those first four years with lupus was a real nightmare. On 80mg of prednisone, for a long time. Then the chemo for six weeks, my hair fell out, my teeth fell out and what teeth didn't top and bottom were removed, my doctor was afraid that poison from my teeth would kill me. "God I don't know what I would have done without her." Finally lupus must have been taking a rest for I felt like I was living somewhat again. By 2001 I was off of the preds, no more chemo, taking less meds for the side effects from the meds I was taking. I starting to learn how to live with lupus. I'm still learning, I think we all are.

Any one ever hear about the T cells?
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