Top 10 things to know about Lupus - Part II

Understanding your (or your loved one's) new diagnosis of Lupus is the first step to learning to thrive with it. This is part 2 of a 2 part series discussing everything newly diagnosed lupus patients need to know.
🔗 Links:
Your Appointment Home Run Handbook - connectedrheumatology.com/app...
The guide you need to be able to tell your doc your story -and find get answers once and for all!
www.lupus.org
www.usinlupus.com
⏱Time Stamps:
1:45 - Lupus is most commonly diagnosed in young women
2:50 - The cause of lupus is still unknown but most likely a result of the interplay between genetics and the environment (both internal and external)
*4:50 - why can't treating an infection or removing a toxin cure lupus?
6:57 - Children of lupus patients have a higher risk of developing an autoimmune disease but it is not destined
8:23 - Lupus patients can have successful pregnancies
10:20 - The lessons of lupus can be a gift
Want more Connected Rheumatology?
✏️ BLOG : connectedrheumatology.com/blog/
🖥 WEBSITE: www.connectedrheumatology.com
🤝 LinkedIn: Connected Rheumatology, PLLC
🎥 watch more:
Top 10 Things to know about Lupus Pt 1: • Top 10 Things to Know ...
Common Lupus Symptoms: • Learn about Common Lup...
Race & SLE: Understand the Connection: • Race & Lupus: Understa...
5 Things you need to know about your +ANA: • 5 Things You Need To K...
🩺 Contact us: [e-mail]
Please note - we do not provide medical advice, opinions or diagnosis via email, phone or social media messaging. We are only open to new patients who reside in Texas, USA.
👩🏻‍⚕️ About me:
Hello! I am Dr. Elizabeth Ortiz and I'd like to thank you for stopping by Connected Rheumatology. I am a board certified Internist and Rheumatologist with over 12 years experience practicing Rheumatology and am passionate about teaching & empowering patients to step up and partner with their doctor. Connected Rheumatology is based in Dallas, Texas and provides state-of-the-art, personalized rheumatology consults for anyone with confirmed or suspected rheumatic, autoimmune or musculoskeletal conditions.
We discuss all things Rheumatology, Immunology, Diet & Movement & Mental Health & Wellness because we believe IT IS ALL CONNECTED!
* The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained in this video is for general information purposes only and does not replace a consultation with your own doctor/health professional. Any comments and/or recommendations made in the comment section by anyone other than Connected Rheumatology does not reflect the opinion or recommendation of Connected Rheumatology.*

[@ladyvmmolawa6554]

Wow...Indeed lupus can be a gift as you say. I was diagnosed about 21 years ago but at the time I did not receive the news well and was in denial for a long period until a recent serious flare, when I had a very low platelet count and Hb levels that I had to get a blood transfusion to keep alive. I have now come to peace and to accept that indeed I do have the condition ( I learnt the hard way I can say). I was recently referred to an awesome Rheumatologist who is now helping me to deal with the condition and the current flare is being kept under control. I am glad to have found this channel too, very informative.

[@jessicacrabtree1001]

I finally was diagnosed at 56. My sister has had it diagnosed 4 years before me

[@carolramsey2205]

I have learned how important it is to be present with those I love. I lost a child and I know how quickly life can change.

[@LivingFree207]

We are so sorry for your loss. 🙏

[@goodintentions1302]

Some of us are so blessed that we have Lupus, a brain tumor, extremely severe central sleep apnea, Chronic Regional Pain Syndrome, Hashimoto's thyroiditis, gluten intolerance, severe contact dermatitis ... I'm willing to give up these "blessing" even as I'm grateful for so many other blessings.

[@foxywhitetip7387]

Have you looked into oxalates ? Sr ken berry

[@patriciachenvert2920]

I have a family member who was recently diagnosed with Lupus. I’ve been trying to learn more about this disease and how our family can better support them. Your videos are so helpful and easy to understand . I feel like I have a much better understanding of what my loved one is dealing with. Thank you so much.

[@NattieD911]

Please treat them with kindness and patience because we have so much against us .

[@thereallydia]

Very nice Mrs Ortiz 👏👏👏

[@terrispangrud7551]

Thank you for this info. I have 2 autoimmune conditions. My 26 yo son has had extreme fatigue since C19 and has had a butterfly rash the last several weeks. He is starting his dx journey with his first appt to address this tomorrow. We're hoping it's not lupus but are preparing for that diagnosis since the rash responds to nothing and looks like every photo shown as an example. Thank you for educating us so we can keep things in perspective no matter how they turn out.

[@kristis4571]

Great job doc! ❤

[@UnderworldgoddessMoon]

Thanks for doing these: I just got diagnosed and I am doing everything I can do educate myself.

[@PatriciaDavies-fi6xh]

I was diagnosed with RA about 7 years ago, then Sjogren's was added, and now I'm going to be starting benlysta - a lupus medication. I've learned that it's difficult to diagnose some of these AI problems (and I test negative to so many things) but my rheumatologist has been treating me anyway because of my many systemic symptoms. I've learned so much from your videos; many thanks for this very important service. Doctors today are really busy, so it's extremely helpful to get so much information from your videos.

[@vouthaythip1675]

Just found your videos/your channel ❤❤❤ Thank you for all of your videos,yes indeed lupus can be a gift! I learned that the hard way,i was ignoring the symptoms,was not listening to my body i ended up to Er..flared!,. I diagnosed with lupus since 2008, MG 2000,breast cancer 2007,explaining to the people around you is impossible 🤷🏽‍♀️and frustration and stressful 🙅🏻‍♀️make you feel like you are making up or crazy!! Thank you from bottom of my hard for making the videos of lupus,sure help me understand more now and then ❤️

[@shannonsalyer4568]

You come across incredibly knowledgeable, compassionate and approachable!! I wish you were in the Spokane, Washington area and could be my rheumatologist!! I just found your channel and have watched several of your videos concerning lupus. I’ve had lupus possibly my whole life but officially diagnosed after cancer in 1998 after a years long treatment of extremely strong chemotherapy!! I was only 23 with one child at the time. You have an encouraging sense about yourself as well! I know for me personally, the only way I make it through all my health challenges is my Faith in Christ and physical & spiritual family!! Thank you for sharing and I will continue to be watching & posting! Blessings! Shannon 💞

[@marydavila8631]

I received my diagnosis 2 years ago at age 65. Everything I see on-line is about diagnosis between 18 to 40. It was reassuring to hear that older women can be diagnosed with it. I was worried I was misdiagnosed because of my age.

[@jta3393]

Hi I hope you are keeping well. May I please know how you are doing? Have you been prescribed medication and does it help with controlling your condition?

[@carolramsey2205]

I am 72 years old and I was diagnosed with Lupus about 4 years ago. I think I have had Lupus for a longer time. So you are not alone.

[@jessicacrabtree1001]

I was just diagnosed at age 56. My sister has had lupus for four years....so that made her 56 too

[@TheKarahLife]

I brought the possibility to my primary and that’s the response I got: “usually we see in people between 18-40”. I’m 57. Since then, I’ve seen studies done (but in Canada, not where I am) that prove there’s growing evidence for “Late Onset Lupus”. I wish more specialists would discuss this. I’m not convinced I don’t have it, so I will keep pressing. I already have IBD (first thought to be Crohn’s by the way it made my entire body jacked up & very, very sick) and symptoms of muscle pain and arthritis have become worse since my colon was removed. The post op pathology was ulcerative colitis. My ANA has only shown to be more concentrated every year yet my RF has fluctuations in and out of range. It’s frustrating but I’m not giving up. I’m not happy some of my gals over 40 have been diagnosed but it does give me hope.

[@may5588]

I was finally diagnosed at the age of 67. I have Lupus and I take Hydroxychloroquine for it and it does help. I’m doing well I go to a Rheumatologist, a Cardiologist a Neurologist of course a primary Care doctor, a Dermatologist, it’s a lot of work keeping up but it is necessary.

[@peggyklingele7458]

i have just had my diagnosis changed from Seronegative RA to SLE, I am 62 but have been on this journey to find out what is going on, for many years. I soon start a new medication and pray this is the correct path.

[@jeanettewalker3315]

Thank So Glad I got a hold of Yur video on KZbin and I pray yu'll have more information soon Decoid Lupus.🤗❣️❣️

[@ConnectedRheumatology]

I'll add discoid lupus to the list!

[@PickledRainbowGold]

Just diagnosed with SLE with Raynaud’s phenomenon. I first presented twelve years ago with morphea. Wild how the body works, thank you! I’m also a transgender man so hormone therapy seems to help combat muscle loss but the effects on my heart aren’t worth the hrt

[@erikabr1879]

I love your videos, thank you for educating us and empowering us. Could you please do a video with suggestions to deal with the lupus flares while at the same time listening to our body?

[@ConnectedRheumatology]

Great suggestion!

[@jeanettewalker3315]

Yes Yu're Correct older women get lupus.i been diagnosed with Decoid Lupus in 2017 I'm 74 now.🤗💖💖

[@fatimagross1956]

What’s a decoid lupus??

[@claytonanzai3090]

Thanks for informing the public that men also have lupus

[@erinm6376]

Thank you for your video. I was diagnosed a couple months ago with early Lupus. Besides the frustration of being sick and tired of being sick and tired, I didn't know what information my rheumatologist was looking for at our appointments. It's been like a whirlwind of symptoms that I didn't know how to separate or report accurately to my doctor. That being said, I am also in nursing school. It has been helpful for me to learn the other side of it and to better understand what my patients are experiencing since their symptoms will be very different than mine.

[@jessicafoltz6147]

I also struggle with knowing what all to tell what dr. When your whole body and all of your systems are freaking out its hard to know which symptoms to bring up as a priority 😢

[@Sue906]

I have battled lupus for many yrs & have fibro as well.Some days the chronic pain is so harsh.I have zero family support makes it really tough.Ty for this video .....😊

[@foxywhitetip7387]

Hear hear sister ♥️Stay strong and be gentle with yourself

[@yvonne3903]

I would agree with number 10 and never push yourself, pace and try to keep everything in balance. Is the sensitivity to light something to do with interferon? and if so is it kinda separate from lupus preceding it?

[@kendregab7328]

Hi. I was just told by my neurologist that my ANA antibodies are positive with Homeogeneous Pattern 1:320. A lot of my protein levels are flagged as high with C3 serum flagged as high also. I have a lot of the symptoms like hair thinning/ loss, joint pain, muscle weakness in arms and legs, psoriasis, itching with no rash, electric shock down my neck when I move my neck, cog fog, cramps and spasms all over my body with tingling and twitching, tremors after I lift something, fatigue, body aches, burning sensations in my joints like they feel warm too the touch sometimes, and last month I had some difficulty walking and with balance issues. I told my neurologist that I believed my symptoms where related to Multiple Sclerosis but after my blood results she referred me to a Rheumatologist. I have an appointment with them on July 11 and I'm nervous because there is lupus in my family ( my aunt and my cousin on my mom's side have lupus). I don't know about my dad's side. I just can't wait for my appointment 😔

[@patriciaperezhaysmba5223]

The past two years have been very difficult. My lupus flared after the second Maderna vaccine. My brain fog is the worse I have ever experienced. My energy level is low and so are my spirits. I usually bounce back from flare but I seem to be stuck in a funk. Any suggestions?

[@LR-yu3mx]

I have lupus SLE It came out after a severe traumatic time in my life. Mine's proof were being photosensitive and the butterfly mark. Looking back in my life, I see symptoms that were there since childhood. My father must have had it.He was very photosensitive, and had strokes.Never diagnose. All three my daughters inherited it from me. The eldest has eczema, second died fairly young of blood clot through her lung. Youngest one has an Auto immune disease. I had 3miscarraiges before my first child. Extreme fatigue is one of the worst symptom

[@jcd3869]

Wish you the best on your journey. My GF is 30 and she was diagnosed with lupus 2 yrs ago. She seems fine for so long then gets flares but doesn't like to complain about it or ask for help. So 90% of the time we forget she even has it. Some of her long time "friends" are very insensitive and have her doing tons of shots, staying out late, and her bosses overwork her like crazy. I try to get her to chill more but she is young and still feels invincible. I will keep helping her eat well and slow down but its not easy to slow her down. Any advice? I hope your feeling okay.

[@LR-yu3mx]

@@jcd3869 Yes. She actually correct in concentrating not too much on it. She has to stay away from cortisone and immune suppressants as much as possible. But when I have a bad flare I take anti inflammatory together with a pain caps like penado. and rest. Since retired I sleep much more and that seems to be the answer. And NO stress if possible. Glad she has you, who are kind and sympathetic.

[@LR-yu3mx]

@@jcd3869 I forgot...thanks for well wishes. I take omega3 vit D3 and calsium/magnesium supplements daily, an eat lots of fresh fruit and veggies. Try to cut out sugar and chocolates!Those 2 give flares. Healthy gut is the key. It had everything to do with ones gut. Refined food and white wheat flour taboo!

[@jcd3869]

@@LR-yu3mx wow so glad your doing better and thanks for your advice I will tell her for sure!

[@jcd3869]

@@LR-yu3mx Hmm so yeah she is great at not concentrating or feeling bad for herself so thx for confirming that! Congrats on being retired! So glad your doig better. I will share ALL your advice and def got her back ❤‍🩹❤‍🩹❤‍🩹

[@morriganwitch]

I had a propensity to auto immune ie I had psoriasis then I caught Covid now I have multiple issues including ? RA and or Lupus or psoriatic arthritis etc still being investigated

[@rogervoysey5689]

Very much like polymialgia which I have. It's been controlled by prednisone small dose

[@dustibradford2075]

Hello so they think I have lupus both grandparents on both sides have it . I have hashimotos and celiac and Anemia along with many more and I had positive ANAs before when diagnosing my other disorders but now they are looking for lupus it’s saying negative but my doctor is positive I have it too he said it might be because I’m not having a flare right now .. I’ve also had pneumonia for 9 months and severe asthma so I’m on a shot called fasenera for e asthma and he said that shot can be messing with my test results?!

[@ConnectedRheumatology]

I replied under "Why you can't get a diagnosis"

[@noneyabusiness9441]

I have Lupus with ITP and everyone should know that with Lupus you should know what ITP is.

[@gypsygirl9]

What is ITP , please?

[@noneyabusiness9441]

@@gypsygirl9 it’s a rare blood disease where your platelets get attacked by your antibodies

[@gypsygirl9]

@@noneyabusiness9441 ugh..😒

[@noneyabusiness9441]

@@gypsygirl9 I have to go to the cancer center every Thursday to get my blood drawn and a shot. The shot just makes me produce more platelets for my antibodies to destroy. No cure. Now my arm looks like I’m a drug addict due to doing this every Thursday since April

[@fotocindy]

You need to go to a hematologist. I had my spleen removed and that fixed my ITP. That was over 35 years ago. I do still have Lupus. ITP is under control

[@Al-lo5se]

Can ds-dna test be false positive because the time the blood was collected i also have dengue. Then my red blood cells go up and down, until the lowest is 9. Which is on dengue a rollercoster red blood count is not common or normal. But after a numerous steroids iv, meds that i took for 3 weeks my ds-dna become negative. Can my ds-dna test is false positive?

[@zunerazubairy2992]

I went to my pcp because of body aches n fatigue i had fertility treatmnt failed ..she checked my ana n antidsdna was positive all other cbc panel is good than i went to rhematologist she has done crp esr c3 c4 dna by crithedia rna polymerase n other test all are negative she said i dont have lupus i have fibro ...but i have body aches n nothing else n im thinking yy my dsdna is positive with pcp and what the diffrerence between dsdna and dna by crithedia?

[@TheSherryBoops]

Thank you. I think it's to late for me. I was told o have Lupus when I was in my 30's. I'm now on my 70's. I couldn't find any one to talk to. Now I'm to old for anyone to care,

[@foxywhitetip7387]

I c are because I m in the same boat

[@ninjakris3004]

Anyone have suggestions or tips for someone, (me) who has a new partner with lupus? Thanks in advance!

[@patriciap.9034]

Hi, I’ve had lupus since my 20s and I am now in my 70s. The one thing you can do is learn your partners symptoms and the reactions to the symptoms. This way you will be able to help at those times when you know you should be helping even though you are tired yourself. Compassion and kind words go along long way. Sometimes just rubbing someone’s back, being positive in a quiet way is best. Too many words can turn a person off when they’re very sick with a flare, and what they really need is someone to hold them and perhaps just listen to music or even to pray if you’re a praying person, lupus has ravaged my body and yet I’m still alive. I fully believe I am alive because of the support I have from my husband and my children. Whatever you do, don’t show anxiety at your partners worst time, instead, tell them you will both get through this together. Hearing that word together means a lot to a person with lupus. Hope I’ve helped. God bless you.

[@ninjakris3004]

@@patriciap.9034 thank you so much Patricia, I’m sure it’ll mean a lot to her.

[@elainesoto6159]

I have to kids a 8 and a 2 year old I'm always in pain sometimes I can't even get up and I cant remember lots of things my head ace are bad i feel like my kids are paying for it it makes me sad I knew I had it my mom had she died from it very hard death since I was little they told me I had it I would not go to the doctors till a year ago i had to ask the doctor to test me they told me I was positive for lupus I'm on medical my doctor and i have had words she thinks I'm dumb like I don't know what's going on I took care of my mom to the end of her death my doctor's is very far away from where I live sometimes I can't even get to the doctor I feel like this doctor doesn't know or care like today is a bad day for me I'm can't even get up I feel sick when I eat my bones hurt have arthritis to and im a anemic and they said I have no immune system 😮I'm always sick and I don't know what to do😢 i have 8 kids 19 teen grandkids i want to be there for them and my husband I know when I'm getting I will feel okay if I don't do so much I feel like it's a curse to have lupus and my kids dont want to face are talk about it they say they cant

[@Goated39]

Can you be MY rheumatologist? :(

[@anitakirby2964]

Thanks for your time.. but I LL just go do research at the library to getu answers.. All I want to know are signs and symptoms Not have to listen to all of this talk....I hope you are helping others but for me all I want to know are the bone lupus symptoms...Thank you, and I hope another person us getting dpmeth8 out of your speaking. God Bless You .snThsnks

[@ConnectedRheumatology]

Best of luck!

[@mikilakillwell]

this video was not titled "top 10 things to know about bone lupus". maybe someone will find your comment useful but I sure didn't. wish I didn't have to read it.

[@aliciareed-oliver2577]

It is my opinion that not all rheumatologist are as educated to lupus. I have recently moved and need a doctor. I was very lucky to have been dx by a top doctor in Houston. I have seen several in my area but I get the deer in the headlights look when asking spicific questions about lupus. Bottom line is there criteria that I should be asking when interviewing to potentional dr.?

[@sandraschick1916]

Lots and lots of words and yet saying VERY LITTLE! Do you just babble on to make the videos longer? If so - please don't. I subscribed with high hopes of actually learning something but since have unsubscribed because I get tired if listening to your rhetoric that says nothing! Good luck in your future videos though. Hopefully others are really appreciating your videos!

[@thyehean3707]

Thank you very much for your video. I find it very interesting and informative. Hope you will come up with more. Thanks again

[@carolramsey2205]

I have learned how important it is to be present with those I love. I lost a child and I know how quickly life can change.