Welcome to the Lupus Research Alliance community!

Lupus Research AllianceLupus Research Alliance Administrator admin
edited April 2018 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.
  • 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 
  • 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.
  • 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.   
  • KimKim Member New Member
    Hello, I am a brand new lupus diagnosis. I've been treated for spinal abnormality pain for over 20 years. Now they've decided most of the pain is from Lupus. I'm allergic to most pain meds, tylenol 3 is about all I can take. I'm a gastric bypass patient and cannot take NSAIDS or anti-inflammatory meds. With the crack down on opiods, it is very difficult to get a doc to help with pain. I am using medical marijuana. It helps me sleep, but can't take it in the daytime.
    Any advice, help, suggestions, whatever is appreciated. 
    Not sure how these numbers work, but my ANA is 1280.
  • SidraSidra Member New Member
    Hi i m lupus patient i am facing problems  like chronic fatigue and discolourization of fingers .winters are very difficult comparatively .i get chest pains and breathing problem .one day steroids will be finished is there any chance or not ? 
  • KaruKaru Member New Member
    Hello. Thank you for this page. I was diagnosed 5 months ago. This situation is driving me crazy. I have Lupus, Livedo Reticularis and lot of different symptoms. Sometimes I cry and sometimes I say to myself that I have to be strong because it will be good for my health but I'm living in Europe, English is not my mother tongue and the country where I'm living in is an English country. Here it does not exist a lupus community. Thank you all again. Karina
  • KaruKaru Member New Member
    edited August 2019
    "First if you have Lupus and are taking Protonix or Nexium, both are Proton Pump Inhibitors contact your doctors and talk to them about the effect the drug may have on your Lupus"


    Hi Clem, I'm taking Omeprazol since 2008. Do you know if this drug could cause Lupus too. I mean if all the Proton Pump Inhibitors  are the same.
    Thank you so much in advance.
    I also taking a medicine for cholesterol and I know that it could cause Lupus but my doctor said that leaving Rosuvastatine could be worse.
    Have a wonderful day,
    Karina
  • Healthy_Life_ChoicesHealthy_Life_Choices Member New Member
    Glad to be here & help others on what saved my life. Nearly died with 80 symptoms an was down to 107lbs as a 5/10 male & now I'm gaining my weight back along with a little muscle but I know I'll never be what i once was tho, at least I'm no longer severely sick an living a somewhat normal life. Look at what I posted on what I found that works best for Lupus. Pray you all find tranquility
  • April83April83 Member New Member
    Hello everyone my name is April. I was just released from a 6wk hospital stay and diagnosed with Lupus. I have a great deal to learn more about it. Still in recovery at home with a walker. Any tips or advice on day to day living with Lupus would be greatly appreciated! Thanks 😊
  • ster1944ster1944 Member New Member
    I did some research on my family and found out that when I was starting school and had to have my smallpox vaccination it wouldn’t take. The doctor tried three times but to no avail. He said I probably had a natural immunity.  I then found out my father had small pox when I was conceived.  Then another doctor told me that I was formed with an immune system all revved up since I was either fighting the small pox or had received the antibodies from my father. I found that interesting.  
  • Kelkel215Kelkel215 Member New Member
    Ok so I'm wondering if anyone can shed light on the symptoms you have with lupus. I'm not 100% diagnosed yet but here are symptoms I suffer with . I suffer so much that other around me have became rude and say things such as : "there's always something wrong with you" or "it's all in your head" to the point I've been in tears because I truly hurt and somedays hate life because I feel so bad. I'm tired of being this way. Here are my symptoms!!! 1. FATIGUE/EXHAUSTION/WEAK/FAINT: It doesnt matter how much rest I get some days I'm so weak and exhausted I feel as if I can barley crawl. . 2. DIFFICULTY BREATHING/ SHORTNESS OF BREATH/CHEST PAIN: it feels like I can never take a full deep breath and sometimes it actually hurts :( 3. I'm severely ANAEMIC: I've had 3 blood transfusions and 3 iron infusions. 4 .JOINT PAIN my legs and arm hurt so bad I can relax I'm up throughout the night trying to make it stop. FEVER: idk why but I run a fever 70% of the time usually over 100.0 6.KIDNEYS: UTI's , protein in urine and trouble emptying my bladder . 7.NAUSEA it's so random. 8. Right now my SPLEEN is enlarger I can see it and feel it and its very painful! 9. Random RED PATCHES on my skin. 10. Mouth ulcers. 11.HEADACHE/MIGRAINES 12. BRUISING . 13. SICKNESS: I catch every infection and virus so I'm always sick :(
  • sandralongsandralong Member New Member
    I would suggest to see your primary care dr and inform them of your symptoms so they run lab work and if you are susceptible to having lupus they will usually see through your bloodwork or a kidney biopsy and from that point on they will refer you to a rheumatologist (lupus dr) and nephrologist (kidney dr) for treatment thru medication to stabilize you 
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