1. < Autoimmune Diseases

Educating others on autoimmune diseases

Posted by Kimberly @sebley12, Aug 17, 2011

I am a patient with MS, Lupus, Sarcoidosis, Psoriasis, Erethema Nodosum, Scleritis, Blferitis, optic Neuritis, Gastroparesis and many more.
There are over 100 autoimmune related diseases that so many people are unaware of and need ro educate themselves as well as their Doctor's so that no one will have to wait 35 yrs for a true diagnosis like I did.
Autoimmune diseases are the number one killer especially to women and children.
Please visit aarda.org to learn more about autoimmune and how it can be related to your chronic illness. I promise you wont be sorry that you did. I am just an advocate for everyone here who is looking for answers and seeking help.
Thank you for listening. xoxo

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Klisa24 | @klisa24 | Jan 18, 2012
In reply to @klisa24 "I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed..." + (show)
@klisa24

I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed with Autoimmune Hepatitis. Has anyone delt with AH, it is frightening and mine has gone into Cirrhosis.

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No I actually have a ton of auto immune disorders, AH is the lastest. I am hoping that it will not progress and so far it seems to be. If it does go further in the future, then I will be a liver transplant patient. What are they doing for you? are you on meds??

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KimPF | @kimpf | Jan 19, 2012
In reply to @klisa24 "I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed..." + (show)
@klisa24

I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed with Autoimmune Hepatitis. Has anyone delt with AH, it is frightening and mine has gone into Cirrhosis.

Jump to this post

For all the autoimmune disorders, I have tried Plaquanel and Methotrexate, but neither seemed to be doing any good. I only take 5 mgs of prednisone. I just began using oxygen when I do any cardio.

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Kimberly | @sebley12 | Jan 19, 2012
In reply to @klisa24 "I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed..." + (show)
@klisa24

I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed with Autoimmune Hepatitis. Has anyone delt with AH, it is frightening and mine has gone into Cirrhosis.

Jump to this post

I too have tried those meds and nothing seemed to work for me, however when I do receive the steroid infusions, I seem to get more relief and my Psoriasis also clear up as though I have never had them. My optic Neuritis clears up as well. I just wish the steroids of any kind did not come with any side effects because I find that it is a temporary cure. Hope you feel better KimPf. xoxo

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Kimberly | @sebley12 | Jan 19, 2012
In reply to @klisa24 "I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed..." + (show)
@klisa24

I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed with Autoimmune Hepatitis. Has anyone delt with AH, it is frightening and mine has gone into Cirrhosis.

Jump to this post

You may have been active with your Lupus and didnt know it , but the heat of the tanning bed brought out the symptoms. Feel better. xo

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katiandtylersmom | @katiandtylersmom | Mar 29, 2012

I have Hasimoto's thyroiditis. Its autoimmune. Just wondering if anyon ehere has or knows about the problems with this disease?

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5 replies
Camille | @camille | Apr 19, 2012
In reply to @kimpf "I was diagnosed with Lupus 18 years ago and 'upgraded' to MCTD several years ago. I..." + (show)
@kimpf

I was diagnosed with Lupus 18 years ago and 'upgraded' to MCTD several years ago. I have also had 2 minor strokes. In November I was diagnosed with Pulmonary Fibrosis, Yuk! I have my first appointment with Mayo in Phoenix in March. Eventually, I guess a lung transplant will be considered.....

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Hi Kim,
I'm sorry you are suffering with Pulmonary Fibrosis.
I just got diagnosed with MCTD, and in the past was misdiagnosed with asthma. (Was taking immunotherapy and subsequently had pulmonary complications and took Prednisone.)
I had a mini stroke at work I think. Please tell me more about your experiences with this illness, and how your appt. at Mayo went.
Camille

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terigrace@hotmail.com | @terigracehotmailcom | May 26, 2012
In reply to @kimpf "I was diagnosed with Lupus 18 years ago and 'upgraded' to MCTD several years ago. I..." + (show)
@kimpf

I was diagnosed with Lupus 18 years ago and 'upgraded' to MCTD several years ago. I have also had 2 minor strokes. In November I was diagnosed with Pulmonary Fibrosis, Yuk! I have my first appointment with Mayo in Phoenix in March. Eventually, I guess a lung transplant will be considered.....

Jump to this post

I also have MCTD and an interstitial lung disease called BOOP which has caused pulmonary fibrosis. I have Sjogrens Syndrome also. I have been on prednisone nonstop for 8 years now along with numerous other meds. My bones are beginning to fracture thanks to all the steroids not to mention the weight gain and mood swings. Anybody else on steroids indefinitely?

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bernard422040@bellsouth.net | @bernard422040bellsouthnet | Jul 17, 2012
In reply to @ckellis "I have auto immune hymolitic anemia with both warm and cold antibodies. Usually life threatening for..." + (show)
@ckellis

I have auto immune hymolitic anemia with both warm and cold antibodies. Usually life threatening for most people because of not knowing where to go. Thanks! What else can we do?

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My husband has cold hemolytic anemia. He's been treated with folic acid, B-12, Prednisone, and Rituxin (Chemo) -also had Neuprogen shots for low white counts. Nothing has worked for him. He also has Lupus and recently conrtacted Hepatitis A and lilver failure. If anyone knows of any research or treatments, please let us know. Thanks!

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st64 | @st64 | Sep 1, 2012

I have had sarcoidosis since 1999. I have been in remission but every morning I have a very phlegmie cough. It lasts a few hours. Would that be from sarcoid possibly? It's very irritating.

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RamonaB | @ramonab | Oct 26, 2012
In reply to @klisa24 "I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed..." + (show)
@klisa24

I have had Lupus for twenty years, RA, Sjogrens Syndrome and I have recently been diognosed with Autoimmune Hepatitis. Has anyone delt with AH, it is frightening and mine has gone into Cirrhosis.

Jump to this post

I was diagnosed last December with AH. I'm off the prednisone, now taking the azathioprine...per the biopsy, they caught it before my liver was damaged. I'm frightened, period. Appreciate anything anyone would be willing to share.

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