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Old 07-17-2009, 06:10 PM   #1
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Life length of a Lupus patient

What is the typical length of life once you know you have Systemic Lupus and the Lupus Anticoagulant? I've been told that my life probably won't go much beyond another ten years, but that this is a general ball-park guess. Is there some sort of manner in which to calculate something like this? I'm not trying to sound morbid, but I'm interested in planning. I'd appreciate some insight. If I need to provide more information, please let me know.

Sincerely,
Jon (Conductor)

 
Old 07-19-2009, 05:51 PM   #2
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Re: Life length of a Lupus patient

Jon,

I'm not a doctor and I am not basing my comment on a study but rather on knowing numerous people with lupus, including my Godmother and several family members and friends.

From what I've seen, life expectancy depends on how bad the lupus is affecting your body/organs. My cousin and Godmother lost their battles with lupus due to complications. My Godmother was in her 70s and my cousin was in her late 30s. Both had lupus as long as I can remember.

However, I have several other friends who have had lupus for 30+ years and in a few of them, the lupus just suddenly became inactive after having it for 20+ years and they live normal lives. They don't avoid certain foods or the sun and yet don't have flare-ups either.

I am in the developing stages and from what I've read in Dr. Wallace's book, just by being put on plaquenil for 2 years, reduces my chances of lupus progressing. From what I've read, if my doctor and I can prevent the lupus from affecting my organs for the first 5 years after diagnosis, there's an extremely good chance that it never will.

I don't know if that's what you were asking, but I hope I provided you with some useful information.

Tricia

 
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Old 07-19-2009, 06:01 PM   #3
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Re: Life length of a Lupus patient

If you are new to lupus you should invest in a copy of Daniel Wallace's book "The Lupus Book". It has a lengthy paragraph about when lupies die. I'd retype but my one hand doesn't work well. The book is written (mostly) for the lay person.

 
Old 07-20-2009, 01:50 PM   #4
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Re: Life length of a Lupus patient

Dear Tricia and Heidi,

Thank you for your comments. I've had Systemic Lupus and the Lupus Anticoagulant since 1993--at least that's when it finally was diagnosed. I would say that the obvious symptoms began when I started college in 1987. I only missed one day of High School, and then things really started to change.

Headaches, anemia, constant strep infections of the throat, constant ear infections, bouts of pleurisy (which always seemed especially strange), incapacitating pain in my joints (knees and hips). The list could go on and on. But, my age, race, and gender did not lead the many physicians I saw to think of Lupus. It was just a fluke that a random doctor called for some bloodwork that finally showed some more definitive answers. The Lupus Anticoagulant test, ANA levels, and follow-up syphilis tests (to check for a false-positives) all helped determine the diagnosis. Plus, I had previously had acute glumerulonephritis, which they think was probably the Lupus showing its ugly head.

So, it took a long time before I found out what I had. I am a chronic pain patient, and I feel better since I am on the Duragesic patch and Dilaudid for LA pain. Plus, I use Actiq for BT pain relief. These are crucial to my living. I also take Coumadin for the Lupus Anticoagulant. I DO NOT use any type of steroids because they provide no relief. I tried just about anything when I was first diagnosed and about 5 years ago (newer things). The opiate pain medications help my pain, and that's what I need. Unfortunately, I am on Social Security Disability due to this condition. I used to teach school, have my Bachelor's and Master's. I even have two years of Law School completed, but my health problems just became too much.

Look at me...I've probably bored you all out of your mind. Sorry!

Thank you, again, for responding to my post!

Sincerely,
Jon (Conductor)

 
Old 07-20-2009, 02:10 PM   #5
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Re: Life length of a Lupus patient

Jon,

Nothing about lupus or the stories of people's experiences are boring. Everybody's stories are different, yet the same.

I don't know much about lupus anticoagulant and would like to hear more about that. It sounds like you're dealing with a lot of pain. Have your doctors discussed putting you on plaquenil or methotrexate? I read tht steroids don't help you, but I wonder if an anti-malarial or DMARD might help...

I'm lucky that I was diagnosed early and have a good chance of my disease becoming inactive again (at least I am hopeful). My organs aren't involved yet so that's a plus.

Good luck,
Tricia

 
Old 07-20-2009, 03:32 PM   #6
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Re: Life length of a Lupus patient

Hi, "Conductor". Taking disease-modifying meds (DMARD's) that suppress production of unwanted autoantibodies is so important in lupus. You didn't cite in your post if you take meds BESIDES pain meds & Coumadin for the APS. I really hope you've not given up on considering the various classes of meds that can disrupt the disease process.

Do you see a rheumatologist regularly? And if your kidneys sustained damage earlier, a nephrologist as well?

You don't have to answer a thing, BTW! I just got a little worried here, thinking of you in pain & possibly not taking the sorts of meds that go to its root cause. I'm also a big fan of Dr. Wallace's lupus hardcover. Have you browsed it? Best wishes, Vee

 
Old 07-22-2009, 05:25 AM   #7
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Re: Life length of a Lupus patient

Conductor, hi. This is further re: Triciah's mention of "LA" = lupus anticoagulant. My understanding, from Dr. Wallace's hardcover, is that despite its totally confusing name, LA relates only to APS, *not* to lupus.

APS can co-exist with lupus or other conditions, or it can exist "standalone".
Other *rheumatic conditions* in which APS antibodies are seen include SLE, Sjogren's, RA, autoimmune thrombocytopenic purpura, psoriatic arthritis, systemic sclerosis, mixed connective tissue disease, polymyalgia rheumatica, giant cell arteritis, etc. But APS antibodies can also be triggered by *non-rheumatic* diseases (Hep C, HIV, malaria)---and also by certain *meds*.

When I wrote earlier about the importance of regular appts. with a rheumatologist & other specialists, I was worrying about your having only Coumadin & pain treatment. But if you tried, say, only one rheumie & found his regimen didn't help & then you never tried another rheumie...? If that's the case, I hope you'll re-establish with a new rheumie.

A rheumie has achieved a huge improvement in my health; I hope you grab at that chance, too! With modern medicine, today most people with lupus can live normal lifespans, with up's & down's possible, of course. Hugs, Vee (Please forgive me if a "nanny tone" crept in. I tried to avoid, honest!)

 
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