Welcome to the Lupus Research Alliance community!

Lupus Research AllianceLupus Research Alliance Administrator admin
edited April 25 in Health and Wellbeing

Welcome to our lupus community online forum, where people with lupus and those who hope to learn more about lupus can connect with one another for information and support. This site was developed so that you can share your experiences, insights, stories, ask questions, and learn from others who have had similar experiences.

This forum is a public space. Posts that are not listed in the “Private” discussion area are searchable online to enable others with the same questions to find and join the community. If you would like to protect your privacy and remain anonymous you can select an alias as your username.

Join us! Don’t be afraid to join in conversations in the forums, or to start your own discussion. Maybe post a quick hello introducing yourself to get started.

Respect others. Please be considerate of all posters on this forum. We are a diverse community of people.  Everyone is welcome and has the right to participate. You may not always agree with another’s opinion or everything that you read, but please be respectful and polite in any posts you make.

Medical advice: Sharing personal experiences is encouraged, but everyone’s experience with lupus is unique.  What works for one person may not work for another. For medical concerns, always speak to your primary healthcare physician or provider. Lupus Research Alliance does not endorse the suggestions found on community unless noted as certified content from the organization.

Follow the rules: By posting to community, you agree to abide by our Terms of Use and your privacy will be protected in accordance with our privacy policy.

If you have any questions about the community guidelines, you can email [email protected].

Comments

  • DiamondNHoustonDiamondNHouston Member New Member
    I like this style. I believe it will be very useful over time. I appreciate the categories.
  • EMEM Member New Member
    I think that having a supportive community is beneficial not only for the individual that is suffering from lupus but for family and caregivers as well. 
    thank you. 
  • khananikhanani Member New Member
    Hi I was diagnose with Lupus 2015 I suffer from eosophogal reflux most of the time. Following diet that is gluten free and other advises where diet us concern. Need advise taking medication but not getting better 
  • BorealisBorealis Member New Member

    Thank you for the opportunity to share views, symptoms, opinions, etc with caregivers and patients like me.  I was diagnosed in 2016. I have Lupus Antiphospholipid Syndrome, Kidney disease and mitral valve regurgitation. I believe I have some of the best care in the world as I live in Boston, Massachusetts. I like forums and discussions.  Hope to hear from some patients with similar lupus symptoms as we are all so unique.

     Happy World Lupus Day. 

  • kkaeskkaes Member New Member
    Happy World Lupus Day!  I look forward to learning from folks experience Living with Lupus!
  • GabbiieGabbiie Member New Member
    Borealis said:

    Thank you for the opportunity to share views, symptoms, opinions, etc with caregivers and patients like me.  I was diagnosed in 2016. I have Lupus Antiphospholipid Syndrome, Kidney disease and mitral valve regurgitation. I believe I have some of the best care in the world as I live in Boston, Massachusetts. I like forums and discussions.  Hope to hear from some patients with similar lupus symptoms as we are all so unique.

     Happy World Lupus Day. 


  • GabbiieGabbiie Member New Member
    Hello my name is Gaby , how you can know like when u got the Symptoms?? And how to be stronger about this called Lupus
  • ClemClarkeClemClarke Member New Member
    I have had Lupus since 2005. I started taking the drug Protonix for reflux in 4/2005. I have been taking the drug Protonix continuously since 2005. Just last, 5/01/2018 I was on the Protonix website looking at the side effects associated with the drug because I have been suffering from nausea since the end of last year. Well, what I found was not only that it can cause nausea but that it can also cause certain types of LUPUS ERYTHEMATOSUS. I had never heard this before. My doctor has agreed to get me off this drug. It requires a stepped down process to get off it. I should be off it by 6/19/18. But This drug might be what what originally caused my LUPUS. First if you have Lupus and are taking Protonix or Nexium, both are Proton Pump Inhibitors contact your doctors and talk tothem about the effect the drug may have on your Lupus. If your have had a bad experience with taking Protonix or Nexium and your Lupus please contact me. Clem Clarke [email protected] Thank you.
  • JesJes Member New Member
    Hi Everyone...I have SLE and I live in South Ohio - anyone else live here?
    I think forums like this are a nice way to mitigate the isolation that can sometimes accompany chronic illnesses like Lupus. I'm looking forward to chatting with everyone! :smiley:
  • ClemClarkeClemClarke Member New Member
    Jes My name is Clem Clarke. I have had Lupus since 2005. I live in Gaithersburg, MD. Do you know how you got Lupus. The reason I ask is that I did not know for years. But in the last two weeks, I came across some information on-line that indicates that a prescription drug called Protonix, which treats is used to reflux, may have caused my Lupus. I am currently in the process of checking this out with my doctors to validate this information. But I am definately stopping my prescription to Protonix. I will keep you updated. Clem Clarke
  • JK_Q_TJK_Q_T Member New Member
    Is there other name for flare? - in layman's term please. I always use that term during my medical leave and all the managers ,be like asking what do you mean by flare? Are you hot in flare? Hope someone has a more elaborative term than that. I honestly hate explaining since I have not accepted yet that I am incapable of doing things I used to do.
  • JesJes Member New Member
    Jes My name is Clem Clarke. I have had Lupus since 2005. I live in Gaithersburg, MD. Do you know how you got Lupus. The reason I ask is that I did not know for years. But in the last two weeks, I came across some information on-line that indicates that a prescription drug called Protonix, which treats is used to reflux, may have caused my Lupus. I am currently in the process of checking this out with my doctors to validate this information. But I am definately stopping my prescription to Protonix. I will keep you updated. Clem Clarke
    Hi Clem, no, I don't know how I got it. I was a child when I first experienced debilitating symptoms. I am wondering if something in my environment or a virus flipped on a gene or genes that are associated with Lupus. Not sure I will ever know, and the research is still ongoing. Hopefully we will know the findings (and a cure?!) in my lifetime! 

    Good luck with your search for answers! 
  • ClemClarkeClemClarke Member New Member
    Jess. Thanks for getting back to me. We all want to know how we got it. But the most important thing is how we deal with it. It’s all about our attitude. I say this because I have been a type 1, Insulin dependent Diabetic for 60 years. I am now 75 years old. I have had Lupus since 2007. You can’t let your life be about the illness. I live each day with a great attitude and thank God for all the wonderful things he has given me and don’t spend time complaining about the problems that need to be handled. This has served me well. I can only speak for myself. Clem Clarke 
  • JacquelineJacqueline Member New Member
    Hi! I'm Jackie.  I had medication induced lupus from Remicaid, for Crohns Disease, in 2005. It went into remission for about 10 years. Now, I have SLE; recently diagnosed, trying to wrap my head and heart around it. I have a couple of other autoimmune disorders also. Appreciate having a place for support and  information
  • Lupus Research AllianceLupus Research Alliance Administrator admin
    Thank you all for participating in the forum! We want to make sure that your questions get seen - If you've posted a question in this discussion that hasn't yet been answered, please try posting a new discussion in the relevant category, or searching through other discussions to see if someone has asked a similar question.
    If you'd like more general information about lupus, we have some additional resources available on the Lupus Research Alliance website: lupusresearch.org
    Thank you all again for participating in the forum and sharing your experience with the community.
  • wwild1wwild1 Member New Member
    I too appreciate this forum and it helps to know I am not alone. All of our Lupus stories are so different but they sound the same. Not enough complete research, doctors just treating symptoms because there is no cure. Thank you all for sharing! 
  • soninsonin Member New Member
    wwild1 dijo:
    I too appreciate this forum and it helps to know I am not alone. All of our Lupus stories are so different but they sound the same. Not enough complete research, doctors just treating symptoms because there is no cure. Thank you all for sharing! 
    all doctors just treating symptoms but not the  root. Nobody asks you how you exactly feel, how your life, your diet was before, what type of medicines you took along your life...they follow the protocol and give similar treatments for everybody.  I'm sure that diet and  lifestyle are determinated but doctors give more and more medicines.   
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