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].

«1

Comments

  • 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
    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 
  • Angel9Angel9 Member New Member
    I am new and recently diagnosed less than a year ago. I was told by my primary care my ana bloodwork was positive with the antibodies for systemic lupus. I also have had many symptoms for a long time like the rashes on my face and body that were kind of overlooked for about two years.  I also have unexplained fevers, hair loss,  low platelets counts for over a year,  swelling in my joints, mouth sores, and unexplained random attacks of pleurisy.
    I was put on plaquenil immediately, and it had been much better within a few months. I learned it was best to get back on it as i once took it for suspected RA in the past and had to go off it which hurt my joints, but I wanted to try something natural to help it.
    The ana test came back positive after I developed something called tenosynovitis causing bad thumb swelling like big marbles in my thumb joints and I was told by the dr that I needed an ana test.  When the doctor tested for ana i knew I had the test in the past, i think, just a few years ago and did not know it could turn positive at some point so soon. I was told that it can happen pretty quickly and I remember thinking then about all these rashes and symptoms I was having.
    When I went back on the plaquenil, I felt so much better after a few months. My joints went from unbearable pain to tolerable at that point. It was better than the improvement i had when i went on it before within maybe a few months. My rashes were better, and the weird pleurisy cases just went away. I even had a few less migraines when I had been having them almost daily. I guess sometimes treating your condition the right way has good effects on other things.
    I  went to a rheumatologist and was told the ana was the same and that the titer? didn't go down or up on the repeat test. The rest of the bloodwork was okay. I was told the Plaquenil is controlling it well and although I still have pain and rashes, my platelets finally went up to to within the normal range. The specialist said stay on plaquenil, and now I am worried with what is going on with the shortages when I run out of this since it helps me. If i miss one dose it is painful. 
     I had these symptoms among others for years and never dreamed I'd get news like this because I thought I knew what was supposed to be wrong, a diagnosis of possible rheumatoid arthritis from a rheumatologist years ago, although the rheumatoid factor was negative.  However, i did have a lot of inflammatory markers up on some bloodwork. I remember the rheumatologist nurse practioner once suggested seronegative lupus, not rhematoid arthritis because of my symptoms at one point. They werent as intense as last summer, but they were bad. The new rheumalogist believes that I could have had a much milder or maybe borderline or seronegative case at that time and that my symptoms could be easily overlooked because lupus, and just about any lupus like condition, can mimic a lot of other things. 
    I also feel like bloodwork changes a lot with this.
    Until several months ago, I've never dealt with low platelets or other abnormal bloodwork like this. It did eventually get better, but that was the scariest thing because it was affecting my platelets and causing causing inflammation in my lungs. I am still coping with this news from last summer, and I am dealing with the fact that I have this, but I am relieved to know something because this explains a lot of my symptoms that have been a part of my life so long.
    I feel for everyone who has their pain overlooked by this because I experience this all the time. I get that people may not fully understand that lupus, or any other autoimmune issues or disabilites, but I don't understand why people have to act like I am overeacting and like if they can't see my pain, it's not there. I have learned to just try to filter out the negative words of others because just because they say something I know isn't true, it won't make it it true no matter how much they say it. Just knowing that can help a lot. When I was told i had lupus, that could turn serious, and it's something i have to take one day at a time right now. This is hard, but I'm trying every day.
  • AngeloAngelo Member New Member
    Karu said:
    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

  • AngeloAngelo Member New Member

    Stay strong , knowing that you are not alone. Lupus symptoms are real, ignore negative comments. Good luck and stay well.
  • Mayt3Mayt3 Member New Member
    I myself am a caregiver.  Mother of a 28-yr-old son who was diagnosed with Lupus 3 years ago, 11 years post brain injury.  He had a miraculous recovery from a TBI and had just graduated college, then this.  In may ways, Lupus has been the hardest thing we've dealt with so far with exception to his time in the ICU after his accident.  Even his physical and mental rehab gave us hope and showed results.  But, Lupus is a whole different animal and I despair at times over what he suffers with.  Grateful for a page like this for information and support.  
Sign In or Register to comment.