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A Lupus Question?

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Old 06-10-2003, 10:00 AM   #1
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hlowrie HB User
Question A Lupus Question?

My mother has Lupus she was diagnosed about 5 1/2 years ago. When the Dr. told my what her ANA was it was like 1:700, the Dr. gave her 5-7 years to live if she took playquanil (can't spell), and she did for 3 years but it soon made her almost competely blind. So for the rest of the time 2 1/2 years she did not take it. Well my question is this, Is the Dr. right when they say she has 5-7 years to live, maybe less cause she stopped the medicine. I live very far from my mom I see her maybe once a year. I am married but have considered leaving my husband to be with her for fear of something happening. Please I need advice on this disease I don't know much about what it does to your body either so any input on this would be great. Thank You. (sorry so long)

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Old 06-10-2003, 10:56 AM   #2
Join Date: Jun 2003
Location: UK
Posts: 3
chrislupuslady HB User

goodness me these Dr !!!!
I was dx with lupus in 1978...i was 17....
in this day and age theres no reason why u cant live a full life,with reguler meds a good lupus dr and regular checks...well the outlook is good

please note,i am not medically trained i do only offer support and friendship
please note,i am not medically trained i do only offer support and friendship

Old 06-11-2003, 06:04 AM   #3
Join Date: Mar 2003
Location: New York
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peregrine HB User

I think that doctor should be tarred and feathered!

Old 06-11-2003, 07:36 PM   #4
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BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User


I am 52 and was diagnosed with lupus 4 years ago. My ANA was 600. My doctor told me that I had a 98% chance of living a normal life span if I took a few precautions: avoid being in sunlight much, get adequate rest, take prescribed medicines. He said the most common long term effect of lupus is arthritis. He told me that I must have my eyes check by an opthomologist (medical eye doctor) when I started taking Plaquinyl and every 6 months as long as I was taking it because of the chance of eye damage (didn't your mother get this important instruction?).

Does you mother still go to that same doctor? I hope she can go to a different doctor to hear something encouraging. I'd suggest she go to a rheumatologist and get his/her input, too. My rheumatologist is the doctor I see most often and I find his perspective more helpful than my internist's.

I know how hard it is to be far away when you feel you're needed by family. If your mother signs a form for the release of information at each doctor's office, your questions and concerns could be addressed to the doctor. That should give you the answers you need to understand your mom's current medical situation and what can be expected in the near future.

I hope all goes well. Barbara


Old 06-14-2003, 02:18 PM   #5
Join Date: Apr 2002
Location: Jersey City, NJ
Posts: 2,896
zip2play HB User

Also remember that ANA is only the first step in a diagnosis...and a very general one at that. I had a 1:320...lot's of things can cause it but I feared the worst because of many joint complaints.

So then the bevy:
Lupus Anticoagulant
ANA AB W/RFX IFA Anti-Nuclear AB
Cardiolipin AB (IGG)
Cardiolipin AB (IGM)
DNA AB Double Stranded...

All negative.

In a couple weeks the ANA returned to normal.

No reputable specialist should be basing all his diagnoses/prognoses on ANA alone...a case of bronchitis can send it skyward.

Old 06-17-2003, 05:05 PM   #6
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Join Date: Jun 2003
Location: Oh
Posts: 26
marionf HB User

Your Mom may not have understood the Dr. or she may have a bad Dr. I go with My Mom to all her appointments and am amazed
at how little she understands. Also the meds your Mom was on,
she should have had her eyes monitored. There is no reason
for her to have lost sight if this was being watched. Sorry,
I know it must be hard to be far away when your Mom is sick.


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