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firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 5/25/2010 4:23 AM (GMT -7)   
I'm not sure if any of you watched the Miss USA or Miss America pagent that was on TV a week ago, (neither did I), but I had several of my co-workers tell me that one of the contestants claimed to have been cured of Lupus.  They were asking me a bunch of questions because they were under the impression that there was no cure for Lupus.  I told them they were right and I'm not sure what was making this person think she was cured.  Was she misdiagnosed?  Was she in remission?  Did she have drug-induced Lupus?  Anyways, people were getting the wrong impression.
 
Then, another co-worker said she knew of several ladies her age (in their late 50's) who have Lupus but because of diet changes and taking care of themselves they don't seem to have problems with their Lupus.  I'm sure she was trying to hint to me because I've had quite a few issues with mine of late.  I told her that not everybody has the same problems when it comes to Lupus and her friends are very lucky to not have very many issues with it.  I really wanted to lay into her and remind her that if she wanted me to take it easy she could dump her projects that require lots of running around, time and stress on somebody else-grrrrrr!!
 
Anyways, I guess this is kind of a rant, but I wanted to know if anyone saw this and what their feelings were on it.  I was kind of upset.  I did a fundraiser at work for Lupus and there was an organization that donated a large amount of money to Lupus and it was pictured in our paper.  I was hoping for a sort of awareness on the illness, then this chick claims to have been cured.  It would be awesome if there were a cure and I know that all of you are on the same page with that. 
 
Thanks!
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class III Lupus Nephritis


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/25/2010 7:02 AM (GMT -7)   
Every few years someone comes around and claims to have been cured of lupus, I think it is a combo of misdiagnosis and remissions mistaken for cure. It really burns me up though because it has my mother convinced that I want to be sick. If there were a cure none of us would get disability.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 5/25/2010 3:57 PM (GMT -7)   
Tammy,
 
No one knows how to cure lupus or any other AI disease....yet.  This person might be in remission...temproary or permanent but the only way to know will be on the last day of your life. 
 
There are so many kooks who claim to be cured or charlatans wanting to sell one "cure" or another....nonsense.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/27/2010 7:41 PM (GMT -7)   
Don't they drive you nuts???? I still have a friend and a very close one at that, that still believes that I just need to get in the sun more and get more exercise.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 5/27/2010 7:58 PM (GMT -7)   
Lots of people live in denial and can't face reality.  They look for solutions that don't exist and expose themselves to the worst.  I am the ultimate optimist but ever skeptical about unproven cures.  If I were going to die in a short time and was told there was nothing that could help me....then, MAYBE, I would look at that.  I am old enough to remember the laetril scams and 000s of cancer patients were given false hope and their money "stolen."
 
In regard to Ai diseases the level of ignorance (including mine before getting sick) is very high.  People don't understand and offer ignorant but well intended solutions and comments.  goes with the turf of being an AI patient.
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/29/2010 5:13 AM (GMT -7)   
Oh, there's no insensitivity with my friend, she's just not that bright. LOL

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg a  day,Topamax 100mg, MTX 15mg a week, super B complex, multi- vitamin once a week, folic acid,  and Lortab 10mg 4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7. 

Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 6/1/2010 3:27 PM (GMT -7)   
Hey Tammy, I know I am a little late on this but I found this article a few weeks ago that the lupus alliance wrote shortly after Ms. Oklahoma made her statement. It is very informative and maybe something you can let your coworkers read...

www.lupusalliance.org/content.asp?id=415

firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 6/2/2010 4:04 PM (GMT -7)   
Thank you!  This is going to be very helpful:)
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class III Lupus Nephritis


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/4/2010 7:30 PM (GMT -7)   
I know someone diagnosed with lupus due to faulty silicone injections for breast enlargement. She got quite ill and it took several operations for them to get all the silcone out. Once it was removed, her immune system did do better and her health drastically improved. She has not had futher episodes. Whether this should have been called lupus, I don't know. Her ANA was elevated and her body was attacking itself as it was trying so hard to attack and remove the silicone. I have heard stries of people getting "lupus" from silicone breast implants/injections that does go away when the silicone is removed. In medical assistant training that and DIL were the only circumstances we were taught that lupus was "cured".
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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