New and Promising Sjogren's Syndrome Treatment

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  • เผยแพร่เมื่อ 6 พ.ค. 2023
  • Get insights on the latest treatments available for Sjogren's Syndrome from a leading rheumatologist. Discover new options and approaches to manage this autoimmune disorder and improve your quality of life. Watch now!
    Link to find centers to enroll in the IANALUMAB study:
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    👩🏻‍⚕️ About me:
    Dr. Diana Girnita is a double board-certified physician in rheumatology and internal medicine. With a Ph.D. in immunology and training at Harvard and top universities, she founded Rheumatologist OnCall, offering integrative medicine to broaden rheumatology access. With a focus on personalized treatment, Dr. Girnita incorporates proper nutrition, exercise, and stress management. Experience her passion for helping patients with autoimmune disease and arthritis. This video provides general information and is not a substitute for medical advice. Views expressed in comments do not reflect the opinion of Rheumatologist OnCall.
    Important Notice: Medical advice, opinions, or diagnosis cannot be provided through email, phone, or social media. Our clinic serves patients in various US states. Check our website to confirm if we are accepting patients in your state."
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ความคิดเห็น • 201

  • @shirlburris-fg8eq
    @shirlburris-fg8eq ปีที่แล้ว +74

    Swishing coconut oil in my mouth helps with dry mouth at night.

    • @olgarios1509
      @olgarios1509 3 หลายเดือนก่อน +4

      Thank you!!!
      I will do tonight❤

    • @caroleellison3676
      @caroleellison3676 3 หลายเดือนก่อน +2

      Wow ill try that anything to easy dry mouth 😢

    • @WVgirl1959
      @WVgirl1959 2 หลายเดือนก่อน

      I use a half of a 5 mg tablet of pilocarpine at a time.

    • @pario850
      @pario850 2 หลายเดือนก่อน +1

      Oil pulling 🙌🏽 it’s an Ayurvedic treatment

  • @sweetauntbuddy
    @sweetauntbuddy 11 หลายเดือนก่อน +21

    I was diagnosed with ITP in 2002 and my hematologist decided to try Rituximab, as I was miserable on Prednisone. It was hideously expensive, even with insurance, and I turned out to be allergic to it. Thank you for the information about Lanalumab; I am going to try to get into a study. I am on hydroxychloroquine for my Sjogren's (diagnosed in 2016) and the dryness isn't too awful, but the fatigue and pain are getting worse.

    • @venomx4093
      @venomx4093 9 หลายเดือนก่อน +3

      Low-dose naltrexone for pain.

    • @lhu6971
      @lhu6971 8 หลายเดือนก่อน +1

      I WAS ON PLAQUENIL FOR ABOUT 7 YEARS BUT I STARTED GETTING RETINA TOXCITY AND WAS TAKEN OFF OF DRUG.

    • @marija.maravic
      @marija.maravic หลายเดือนก่อน

      ​@@lhu6971I'm so sorry. Is your vision ok now?

  • @lindah8838
    @lindah8838 10 หลายเดือนก่อน +5

    Thank you so much for your videos!

  • @joannejohnson7006
    @joannejohnson7006 4 หลายเดือนก่อน +3

    I am glad that there is something
    Thank you Dr😊

  • @marydomianczuk3586
    @marydomianczuk3586 9 หลายเดือนก่อน +12

    I have sjogren,s I have many problems but listening to you I realize it’s sjogrens and I didn’t know what it was .I live in Canada in a small town. In the west when I go back to my m.D I am going to tell her how much I have learned .Thank you Mary ❤

    • @rheumatologistoncall
      @rheumatologistoncall  9 หลายเดือนก่อน

      Sorry to hear that! Thank you for watching my channel! share with others to learn!

    • @venomx4093
      @venomx4093 9 หลายเดือนก่อน

      Sjogren's leads to Lymphoma cancer. Stay on top of your Sjogren's.

  • @MyFavoriteColorIsBLUE
    @MyFavoriteColorIsBLUE ปีที่แล้ว +7

    Thank you Doctor ❤

  • @rosemarypeoples4781
    @rosemarypeoples4781 ปีที่แล้ว +29

    I have had two treatments with Rituximab , after the first treatment I was pain free for seven months but after the second treatment my pain returned after six weeks, I don’t know why such a different outcome. Thank you for your videos 😊

    • @dw7939
      @dw7939 ปีที่แล้ว +9

      I'm on Rituxan too, I'm about to have my 4th dose - 2 years in. It's been helping with neurological symptoms when nothing else worked. It does take time to work, like 2 years.
      Check your dose, make sure you are getting a high dose not 500. The first dose is a loading dose and higher. With autoimmune we need the loading dose every 6 months. I didn't do as well on the lower dose. I was also switched to a generic version which didn't work as well, make sure you are getting whatever you received when it worked best.

    • @michelekirby-xv4sw
      @michelekirby-xv4sw หลายเดือนก่อน

      Same for me. First one lasted 2 years second one 6 months

  • @DrAndreaFurlan
    @DrAndreaFurlan ปีที่แล้ว +5

    Excellent video!

  • @waleyefish9026
    @waleyefish9026 ปีที่แล้ว +8

    Keep up the Good Work.👍

  • @racheltigger9387
    @racheltigger9387 ปีที่แล้ว +8

    I has humira in the past for a different medical issue and it cleared up most of my primary sjorgrens symptoms. Wish I could get it again!!

    • @rheumatologistoncall
      @rheumatologistoncall  ปีที่แล้ว +5

      Thank you for sharing your experience. I can only imagine how hard is for you.Thank you for taking the time to watch my TH-cam channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you.
      Thanks again for being a part of my community and supporting my work.

    • @user-xw6ee7yv4l
      @user-xw6ee7yv4l ปีที่แล้ว +1

      Hi did it help with dry eyes and mouth or just joint pain

    • @biffjohnson5522
      @biffjohnson5522 4 หลายเดือนก่อน

      Humera didn't help at all

  • @gamaltaher9714
    @gamaltaher9714 ปีที่แล้ว +2

    Thanks

  • @mariasipos526
    @mariasipos526 หลายเดือนก่อน +1

    Multumesc mult .

  • @jmda58
    @jmda58 8 หลายเดือนก่อน +4

    I have found Xylimetls for dry mouth very helpful for overnight while sleeping.

  • @pkirkey6932
    @pkirkey6932 10 หลายเดือนก่อน +7

    I noticed that mouth taping while sleeping not only relieves the mouth dryness a good amount but, believe it or not, my eyes are less dry too when I wake. Maybe less apnea leads to better sleep? Maybe less overall fluid lost due not mouth breathing? It doesn’t take much tape. I use a 2 - 3 cm strip of the tape used in salons during eyelash application. It’s gentle and does the job.

    • @rheumatologistoncall
      @rheumatologistoncall  10 หลายเดือนก่อน

      Thank you for watching my video, dont forget to subscribe to my channel for other videos!

  • @dsuitor304
    @dsuitor304 29 วันที่ผ่านมา +1

    Just diagnosed with Sjogrens (systemic). Cervimeline works great for producing saliva. Take it with a small meal (otherwise I get terrible nausea). It gives me hot flashes for about 2 hrs, but still worth it. It hasn't fixed the problems with my sense of taste. Xylimelt stick-on tablets also work. It sticks on your molar & slowly melts so people can see it while you're talking though. Mint flavor is good (light with no aftertaste). The Cinnamon has a gross aftertaste.
    Celebrex for joint pain helps-ish
    I have a follow-up appt and hopefully they start me on Plaquenil. Nothing helps my daily fatigue.

    • @rheumatologistoncall
      @rheumatologistoncall  28 วันที่ผ่านมา

      I'm sorry to hear about your diagnosis. Thank you for sharing your experience and tips with the community.

  • @Christina_Sanchez1316Vlogs
    @Christina_Sanchez1316Vlogs 8 หลายเดือนก่อน +10

    I have sjogren's syndrome and I've been having flares recently. It's hard when you have such fatigue because on top of the sjogren's I also have fibromyalgia. Maybe I could ask my doctor about what you have included in your video. Thank you so much.

    • @Zetoreh
      @Zetoreh 3 หลายเดือนก่อน +1

      Do you know that many false confuse fibromyalgia with sjörgen.

  • @Susieq26754
    @Susieq26754 4 หลายเดือนก่อน +5

    Side effects are diarrhea, dizziness, ligament sprain, upper respiratory tract infection, contusion, device allergy, fatigue, hypertension, and oropharyngeal pain.

    • @rheumatologistoncall
      @rheumatologistoncall  4 หลายเดือนก่อน +3

      Thanks for the heads up on the possible side effects, stay strong!

    • @lhale9176
      @lhale9176 3 หลายเดือนก่อน +1

      I have it too. All sounds so familiar.

  • @user-ux3rl7wb8h
    @user-ux3rl7wb8h 4 หลายเดือนก่อน +1

    Thank you

  • @rebeccawood7350
    @rebeccawood7350 ปีที่แล้ว +11

    Hello💙 Can you please do a video on how/why Sjögren’s syndrome turns into Lymphoma? I am undergoing testing right now to try to hopefully rule out Lymphoma but I’m scared.

    • @rheumatologistoncall
      @rheumatologistoncall  ปีที่แล้ว +10

      i will do that

    • @digitalskylark
      @digitalskylark ปีที่แล้ว +1

      ​@@rheumatologistoncallThank you so much in advance :)

    • @tribalclan1
      @tribalclan1 11 หลายเดือนก่อน +6

      I have never heard of that…Is that something your Dr told you? That’s scary because I have to look for a Rheumatologist that actually does something…! And my PCP has become so useless as well. I’ve never heard of this turning into Lymphoma! That’s truly scary!

    • @rebeccawood7350
      @rebeccawood7350 11 หลายเดือนก่อน +1

      @tribalclan1 yes, and you can look it up as well.

    • @venomx4093
      @venomx4093 9 หลายเดือนก่อน

      ​​​​@@tribalclan1Sjogren's increases the risk for B cell and T cell lymphoma by like 39% Those with three to six risk factors have a 39.9 percent chance of developing lymphoma.
      People with all seven risk factors have nearly a 100 percent chance of being diagnosed with lymphoma at some point.
      1-Salivary Gland Enlargement
      2-Lymphadenopathy
      3-Raynaud’s Phenomenon
      4-Anti-Ro/SSA and/or Anti-La/SSB Positivity
      5-Rheumatoid Factor
      Positivity
      6-Monoclonal Gammopathies
      7-Complement Component 4 Hypocomplementemia
      Several other symptoms of Sjögren’s syndrome may predict the development of lymphoma:
      Purpura (red/purple spots) on the body
      Tongue atrophy, in which the tongue’s texture changes and it may seem to get smaller
      Cryoglobulinemia (a type of vasculitis that causes inflamed blood vessels)
      B-cell activation in the immune system

  • @dov6465
    @dov6465 11 หลายเดือนก่อน +7

    I noticed in one of the threads that someone was having success with dryness by using Sea Buckthorn berries. Is there any support for this? Does anyone have any experience with it?

    • @johanitalouw9315
      @johanitalouw9315 3 หลายเดือนก่อน +1

      It is rich in vital omega acids

  • @debwaldy
    @debwaldy 3 หลายเดือนก่อน +1

    Thanks very much for your videos. Are there any updates on the efficacy of dazodalibep for Sjogren's disease? Also, would you be able to do a video on daratumumab efficacy in Sjogren's disease? It seems plasma cells are a major issue in Sjogren's disease?

    • @rheumatologistoncall
      @rheumatologistoncall  3 หลายเดือนก่อน +1

      I will look into it, yes

    • @debwaldy
      @debwaldy 3 หลายเดือนก่อน

      Thank you so much-and thanks for your excellent videos, I have found them very helpful when talking to my doctors-o wish all doctors were made to watch them!

  • @pennyc11
    @pennyc11 2 หลายเดือนก่อน

    My eye doctor put tubes into my eyes. That and xiidra have been great for me. I have to read a lot. Now? After reading for awhile the words start to get blurry. Xiidra stings a little at first but it does give a lot of relief.

  • @Turtlerabbit85
    @Turtlerabbit85 8 หลายเดือนก่อน

    i will show to my doctor if he know about this.

  • @TheCherokeeSky
    @TheCherokeeSky 4 หลายเดือนก่อน

    Hi Dr. Diana. Is Ianalumab available yet please? 🙏🏻

  • @jedheart8059
    @jedheart8059 2 หลายเดือนก่อน

    For my allergies and asthma, I take Omizalamab and that does work for my histimines. I was negative for the Sjogrens blood tests. But hopefully people who need this biological ianalab here works.

    • @rheumatologistoncall
      @rheumatologistoncall  2 หลายเดือนก่อน

      It's great to hear that Omizalamab is helping you with your allergies and asthma!

    • @dsuitor304
      @dsuitor304 29 วันที่ผ่านมา

      FYI the Sjogren's antibody tests are not definitive. I have Sjogren's (systemic) but am seronegative: my SS-A, SS-B and all but 1 rheumatoid factor test is normal. An ophthalmologist specializing in Sjogren's dry eye confirmed mine with the Shirmer's tear test & a stain. So if you have dry eye & the SS symptoms find a dry eye Ophthalmologist that knows what to look for.

  • @krishnakarma
    @krishnakarma 10 หลายเดือนก่อน +2

    Hi Dr Diana. How does rituximab helps with Sjogren syndrome lung manifestation? could you kindly further explain this? Thank you.

    • @rheumatologistoncall
      @rheumatologistoncall  10 หลายเดือนก่อน

      Thank you for watching my video, dont forget to subscribe to my channel for other videos!

    • @MsLusciousclick
      @MsLusciousclick 5 หลายเดือนก่อน +9

      She literally didn't answer you. Smh

    • @katharinedavis4947
      @katharinedavis4947 2 หลายเดือนก่อน

      @MsLusciousclick . Perhaps the answer is in another video. K

  • @marjanadidi1261
    @marjanadidi1261 ปีที่แล้ว +3

    My dr give it to me hydrochloroquine for one month and I am going to see him in June .Thank you ❤

    • @rheumatologistoncall
      @rheumatologistoncall  ปีที่แล้ว +1

      thank you for watching my videos!

    • @jolenewashere1082
      @jolenewashere1082 4 หลายเดือนก่อน +1

      what happened did you get well

    • @marjanadidi1261
      @marjanadidi1261 4 หลายเดือนก่อน

      @@jolenewashere1082 Hi , yeah I continue with that and last December he given me and pilocarpine 5 mg two time a day .I am doing okay, thank you 🙏🙋🏻‍♀️

  • @dw7939
    @dw7939 ปีที่แล้ว +3

    Rituxan hasn't helped much with dryness but it sure has helped my Sjogren's neuro symptoms.

    • @rheumatologistoncall
      @rheumatologistoncall  ปีที่แล้ว

      Thank you for taking the time to watch my TH-cam channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you.
      Thanks again for being a part of my community and supporting my work.

    • @arwasaleh9745
      @arwasaleh9745 ปีที่แล้ว

      Hey doctor thanks for your info. My son he’s a seven year old and his blood test turned positive and 1:320 and sense he’s one year old his glands get swollen but this time they did in ultrasound and they said it had two do with sjogrens but he shows no symptoms and know seeing rheumatologist . Am ver scared and if he has it how come tell he shows no symptoms. What do you think. I appreciate it very much if you could reply thankyou.

    • @vampireforever6937
      @vampireforever6937 ปีที่แล้ว +3

      It’s a progressive disease and will show signs gradually ... not to scare you bcs it’s a fact and me too a bird of same feather -- it’s a myth that sjogren only affect female and me itself being a man had this disease for years ... there is no cure for this cursed disease only management is possible .... symptoms can start from dry mouth , eye , to learning disabilities to swallowing to breathing to psychological like anxiety and depression .... pls be with him always.... it’s not his fault but genes that transferred to him from you and ur husband turns culprit... sorry if my reply seems little hard bcs I am also a scape goat of this disease .... may be a curse I got from god

  • @deandadewindaru6747
    @deandadewindaru6747 ปีที่แล้ว +1

    I got twice Rituximab, but it didn't work so well. The last I get Feb 2023. Sometimes I paralyzed, then I can walk again. Recently I paralazed for 3 days. Should I get Rituximab again? Thank you

    • @rheumatologistoncall
      @rheumatologistoncall  ปีที่แล้ว

      I am unable to answer medical questions without knowing the details and having a medical consultation.
      Thank you for watching my videos and taking the time to comment! subscribe and share my channel to be able to help other people!

  • @PerfumedeAlabastro
    @PerfumedeAlabastro 4 หลายเดือนก่อน +1

    Buenas tardes , estoy en la Ciudad de México ,
    Cómo puedo acceder a el tratamiento Ianalumab,
    Donde puedo solicitar una inscripción para el tratamiento??
    Es la primera vez que escucho una explicación sobre posibles tratamientos sin efectos colaterales ❤

    • @rheumatologistoncall
      @rheumatologistoncall  4 หลายเดือนก่อน +1

      I recommend contacting your local healthcare provider or reaching out to the manufacturer for more information on accessing Ianalumab in Mexico.

    • @PerfumedeAlabastro
      @PerfumedeAlabastro 2 หลายเดือนก่อน

      @@rheumatologistoncall ❤️

  • @bigdebs1886
    @bigdebs1886 ปีที่แล้ว +3

    I also wonder if anybody knows about swelling in the soft tissue under the tongue , will this cause dry mouth ,dentist was quite concerned doctor wasn't bothered had a barium swallow nothing showed up , Went to another female gp ,who fished around in my mouth and told me their was no lump , very strange as their is ,
    It's seems to go up and down in size thought it may be a blocked salivary duct , but no amount of quizzing my gp or promoting him , proved fruitful , that was 6 years ago now still getting dry mouth etc and lump is still their ,! Any clues ??

    • @rheumatologistoncall
      @rheumatologistoncall  ปีที่แล้ว +1

      Unfortunately I can’t give you medical advice here. Thank you for sharing your experience!

  • @mariajahin3883
    @mariajahin3883 5 หลายเดือนก่อน

    Hello Doctor, I was diagnosed with sjogren a year ago and have been taking hydroxychloroquine. Since then, after shower my body (mostly bottom part) gets intolerably itchy. Taking shower has became a nightmare. Do you have any suggestions for me? Is their any other med other than steroid or hydroxychloroquine that can help me?

    • @rheumatologistoncall
      @rheumatologistoncall  5 หลายเดือนก่อน +1

      I'm sorry to hear about your struggles with itching after showering. It's important to discuss this with your doctor so they can provide personalized advice and explore alternative medications or treatments that may be more suitable for you.

  • @ChiaraIzziMusic
    @ChiaraIzziMusic ปีที่แล้ว +13

    Please give some hope to all the seronegative patients and to all who struggle for a diagnosis (even the lip biopsy can result negative although in a smaller percentage than the blood test) 😢 any effective, present and future treatment for these people? Can you make a video about this? And if these people are not allowed to get treatment, how they should slow the progression of disease? It looks like that seronegative patient or milder cases can’t be treated until they get worse which is absurd to me. Please do a video about this, sorry for the long post. Thank you 🙏

    • @sherri7673
      @sherri7673 10 หลายเดือนก่อน +2

      Oh Man i agree! I am 59. Have dry mouth so bad. Joint pain and swelling around ankles and feet. Seronegative. I have had numerous ANA and ENA labs done. But that is it. I am really convinced I have sjogrens. I may try BHRT if i can't get a sjogren's diagnoses.

    • @lolitaalmostgrown
      @lolitaalmostgrown 9 หลายเดือนก่อน +7

      I was seronegative the first three times I was tested. An opthamology resident suggested I ask for another test at an eye appointment. Saw 3 rheums who all said I was fine. The 4th one ran an “Early Sjögren’s Panel” & it was positive. By this time, I had had SD for 27 years, lost all my upper teeth. You can continue to test, if necessary. Sorry ❤

    • @ChiaraIzziMusic
      @ChiaraIzziMusic 9 หลายเดือนก่อน

      ⁠@@lolitaalmostgrownI did the early SJO panel two weeks ago and it ended up positive! My first rheumatologist said it’s still not enough to get treated and many doctors don’t fully appreciate this test already but it’s definitely something helpful for seronegative patients. But at the end of the day currently it’s crucial to keep looking and finding a rheumatologist willing to treat you with or without a confirmed diagnosis which can be hard but possible. The disease in my case is still at an early stage, it can’t be stopped with stronger medications such as immunosuppressants (that I don’t want to take either) that are given only when more intense symptoms show up such as joints pain that I don’t have yet, but it seems that there’s nothing else that can really stop the progression and keep it to an early stage (a healthy lifestyle and diet and all the tools for palliative care can help feeling better but still don’t stop the disease progression). Plus without a confirmed diagnosis I can’t even participate to clinical trials, it seems there’s no way out for early SJO cases or seronegative patients with even a negative lip biopsy result. They can “only”hope that new medications for them will be found and pray that their symptoms won’t get worse, it’s hard to accept this and it seems absurd to me. If anyone knows of a clinical trial that accepts seronegative patients with a negative lip biopsy result please let me know, I would love to participate! Hoping for a brighter future for everybody, take care ❤

    • @roisinmc7442
      @roisinmc7442 8 หลายเดือนก่อน +4

      Oh this is so me. Severe dry eyes and joint pain for a decade. Now dry mouth and recurrent salivary gland infections yet no doctor will diagnose me as it's not showing in my bloodwork. Their attitude is that it will when really severe but they can't say I have it until then. What kind of attitude is that?! My optician said i had it when i was 31, scarred corneas from dryness. My dentist said I had it years ago, inadequate saliva and swollen salivary glands. It's so upsetting not getting diagnosis and help

    • @SandraMartinez-os3hu
      @SandraMartinez-os3hu 7 หลายเดือนก่อน

      @@roisinmc7442 maybe you should make an appt with a Rheumatologist.

  • @argentinarodriguez4170
    @argentinarodriguez4170 ปีที่แล้ว +1

    Does Cellcept alleviate the symptoms? TIA

  • @michelejamessinger
    @michelejamessinger 2 หลายเดือนก่อน +2

    The emotional component of autoimmune is relationship issues.

  • @Voop12345
    @Voop12345 29 วันที่ผ่านมา

    Hello Dr. Diana, I’m a 31 years old woman that got diagnosed with Sjrogen syndrome when I was only 13 years old, my main and severe symptom is dry eyes , my ophthalmologist was the one finding out the diagnosis as he said he never saw a teenager with such a severe dry eyes . Fast forward, I’m currently pregnant and wasn’t on any medications prior, just eye drops. My doctor recommended me to start on plaquenil, however due to my dry eyes I’m afraid my retina will get issues with this medication. My eyes are hurting and I’ll be scheduling with a retina eye doctor. Do you really think plaquenil is effective for pregnancy to avoid fetus getting my SSA and SSB antibodies from me ? And causing congenital heart diseases? I’ve heard it’s so rare and I don’t know if it’s worth it to continue on plaquenil with my eye pain.

    • @rheumatologistoncall
      @rheumatologistoncall  28 วันที่ผ่านมา

      It's understandable to have concerns about medications during pregnancy, especially with underlying conditions. Consulting with a retina eye doctor is a wise decision to address your specific eye health concerns.

    • @rheumatologistoncall
      @rheumatologistoncall  28 วันที่ผ่านมา

      plaquenil is the safest during pregnancy

  • @danyechry
    @danyechry ปีที่แล้ว +1

    As a person with favism, it is not recommended for me to take immunosuppressants. I have Sjogren, Can a strict diet and anti-inflammatory supplements reduce inflammation? Are there any trials for this in the UK?

    • @rheumatologistoncall
      @rheumatologistoncall  11 หลายเดือนก่อน +1

      Thank you for watching my videos!please feel free to share the knowledge with others!

    • @curiouskitty7972
      @curiouskitty7972 11 หลายเดือนก่อน +4

      I find that the less sugar you have the better. And also 'sugar free' stuff. So less sweetness reduces inflammation drastically for me. Also turmeric + black pepper and a good quality Omega 3 have been great for me personally. Everyone is different but trust me on the sweetness. I was diagnosed 15 years ago and tried most of the joint care supplements on the market. You can even mix tumeric and olive or castor oil and rub into inflamed joints. Bit messy though 😉
      Good luck hope this helps a bit. 💞🙏

    • @venomx4093
      @venomx4093 9 หลายเดือนก่อน +2

      Yes, but you HAVE to be super strict in your diet. Not even a grain of inflammatory foods. I'm on a low FODMAP diet that is also gluten, dairy and sugar free. All high FODMAP foods are inflammatory. Garlic and onions are high FODMAPS. Look up the AIP diet as well.

    • @elizabethclarke2005
      @elizabethclarke2005 4 หลายเดือนก่อน +1

      @@curiouskitty7972 You are very spot on about sugar in your diet

  • @angelariley3538
    @angelariley3538 9 หลายเดือนก่อน +6

    I’m losing my teeth and already have lost my senses of taste and smell. I have bouts of not being able to swallow and my voice gets very horse. It also takes a terrible toll on the entire intestinal tract. Horrible disease! I was diagnosed with SLE more than 20 years ago and about 10 years ago I was diagnosed with Sjogren’s. The first autoimmune disease I was diagnosed with was Raynaud’s and then Hashimoto’s Thyroiditis. I have so many that different autoimmune diseases that the rheumatologist say “mixed connective tissue disease”.

    • @venomx4093
      @venomx4093 9 หลายเดือนก่อน

      I'm in the same boat with you. Hypothyroidism, SLE, Sjogren's along with Vitiligo.

    • @rheumatologistoncall
      @rheumatologistoncall  9 หลายเดือนก่อน

      Thank you for watching my channel! share with others to learn!

    • @Anna-cx4tg
      @Anna-cx4tg 4 หลายเดือนก่อน +1

      Read Beat Autoimmune by Palmer Kippola

  • @vamama100
    @vamama100 2 หลายเดือนก่อน +2

    SJOGRENS IS THE VERY SUDE EFFECT OF HISTAMINE INTOLERANCE

  • @tribalclan1
    @tribalclan1 ปีที่แล้ว +10

    I was talking Hydroxicichoriquin (plaquinil?..not sure of the spelling) for a couple of years. It didn’t seem to do anything so I quit taking it completely and nothing changed. I have Lupus and Sjogrens. My Rheumatologist gave me injections of Prolia because she said that my bone density showed that my bones had worsened to the point of being like potato chips! Eight years ago (2015) I had arthroscopic surgery on my knee. and I Finally got an answer as to Why I’ve been in so much pain. The orthopedic surgeon told me that my knee has never healed due to Lupus and he wants me on a new injectable medication that I have to get
    every month. I don’t remember what it’s called but it’s some kind of anti inflammatory medicine. I’m losing hope for Anything that can help me and I’m trying to find any type of a Trial that I can sign up for near where I live. So sorry for my Long Post.

    • @rheumatologistoncall
      @rheumatologistoncall  ปีที่แล้ว +1

      thank you for watching!!!

    • @nagwakhalil8892
      @nagwakhalil8892 ปีที่แล้ว +4

      Very sorry to hear about it pain , I will pray for u
      I believe that Jesus can heal u

    • @rosemarier.5377
      @rosemarier.5377 11 หลายเดือนก่อน +1

      In Jesus Holy Mighty Name! Amen. 💜✝️💜

    • @kayeabston4157
      @kayeabston4157 6 หลายเดือนก่อน +3

      Going off Gluten and taking a excellent brand of fish oil has put me in remission for over 12 years. It’s worth having your life back. And yes a relationship with Jesus Christ has kept me going forward. I am in so much peace and happiness. Please try it. It’s not for short term it takes a while. If your committed you will improve. The Lord bless you! 😊 and lavish his love upon you. ❤

    • @beautifuldisaster08
      @beautifuldisaster08 6 หลายเดือนก่อน

      ​@@kayeabston4157 Hi. I'm new on here but I saw your post about the fish oil. I'm in so much pain and my symptom list now is so long, I can't even believe it. Could you please tell me what brand of fish oil you took? I'm ready to try anything at this point! Thank you so much! God bless you and I'm so glad to hear you're in recovery! 🙏🏼❤️🤗

  • @MsNooneinparticular
    @MsNooneinparticular 8 หลายเดือนก่อน

    Yay! I was always told there was NO treatment for the underlying disease... only symptomatic treatments for dry eye, mouth, etc. That's what's prevented me from seeking a diagnosis. What's the point if you can't even treat it? Don't nobody want a painful lip biopsy for nothing. 😝 But after watching vids on here I'm now worried about heart damage, interstitial lung disease & kidney problems so... yeah.

  • @lindseyneves8028
    @lindseyneves8028 ปีที่แล้ว

    Is Ocrelizumab one of these treatments?

    • @rheumatologistoncall
      @rheumatologistoncall  ปีที่แล้ว

      not as far as I know.Thank you for taking the time to watch my TH-cam channel! I appreciate your support and interest in my content. It is always motivating to know that my videos are reaching and resonating with people like you.
      Thanks again for being a part of my community and supporting my work.

  • @lolitaalmostgrown
    @lolitaalmostgrown 9 หลายเดือนก่อน +3

    Prednisone works best for me, once or twice a year, when things get out of control. It was fine when I needed it for asthma, but now that I have an AI disease, they balk at giving it to me. Can it be an effective long term strategy?

    • @rheumatologistoncall
      @rheumatologistoncall  9 หลายเดือนก่อน +1

      yes, if all possible! Thank you for watching my video and supporting my educational efforts!

    • @barbiekat6352
      @barbiekat6352 7 หลายเดือนก่อน

      @@rheumatologistoncall I do not understand your answer to the question, can prednisone “be an effective long term strategy”?” Please clarify and elaborate… thank you!

  • @jilljones4566
    @jilljones4566 ปีที่แล้ว +3

    Can these treatments be used if you do not have Sjogrens antibodies?

    • @rheumatologistoncall
      @rheumatologistoncall  ปีที่แล้ว

      No!

    • @jilljones4566
      @jilljones4566 ปีที่แล้ว +11

      ​​@@rheumatologistoncallhis is the problem. If you are 'sero negative' Sjogrens it is hard to get treatment. Most doctors (UK) do not take your symptoms seriously but yet you suffer just as people who do have positive SS blood tests. Please could you do a video about sero negative Sjogren's as it is a big problem. Is sero negative Sjogrens actually a different condition?Thank you.

    • @SassyO100
      @SassyO100 10 หลายเดือนก่อน

      @@jilljones4566it’s definitely a problem. Even Sjorgrens I’ve found not widely known about so my Uk GP has dismissed my symptoms for 7 years. Feels like a long road to just get a diagnosis.

    • @roisinmc7442
      @roisinmc7442 8 หลายเดือนก่อน

      ​@@jilljones4566i am in this boat too. If you hear of any helpful uk rheumatologists please let me know

  • @marie-anne8780
    @marie-anne8780 ปีที่แล้ว +1

    Bonsoir, merci pour vos videos !
    Pouvez-vous mettre les commentaires en Francais ??? Merci !

  • @adhikariindia
    @adhikariindia 7 หลายเดือนก่อน

    I have ankylosing hlab27..and i have dry mouth all the time..

    • @rheumatologistoncall
      @rheumatologistoncall  7 หลายเดือนก่อน

      Thank you for watching my channel! Share the information with others in need!

    • @vivavita3769
      @vivavita3769 5 หลายเดือนก่อน

      Try Xylimelts.

  • @dulceocampo533
    @dulceocampo533 9 หลายเดือนก่อน +1

    Does hydroxychloroquine work on Sjogren's syndrome?

    • @rheumatologistoncall
      @rheumatologistoncall  8 หลายเดือนก่อน +2

      YES, it does!
      Thank you SOO MUCH for watching my channel!

    • @vivavita3769
      @vivavita3769 5 หลายเดือนก่อน

      This medication has bad side effects. I'm already vision impaired and don't want to risk blindness which can happen 6 years after stopping this med, Beware.

  • @jankatinkakristinka9165
    @jankatinkakristinka9165 4 หลายเดือนก่อน +1

    My eyes burn and itch and my whole body hurts like a muscle sore. Burning pain in the entire oral cavity, tongue and throat. I'm sick of eating and talking.
    I have no enlarged nodes and no swelling on my neck or face.
    My oral microflora is normal
    I used contraception, antidepressants, antipsychotics and antihistamines for a long time. So after these medicines I had a dry mouth.
    And in childhood I had swelling and bruising from my temple to the salivary glands on my face - an accident. It wasn't serious. My grandfather used to give me acetic ointment there.
    When someone slapped me in the face with a fist, I had a problem with saliva and eating.
    When I was sick, my entire oral cavity - sled and sled joint, ears and teeth hurt. But the teeth were fine. I had difficulty eating and swallowing. Severe pain and swollen nodes.
    No one has addressed this. A few times I was blown by the icy wind and the pain started. I have to cover myself if the wind blows.
    My ears also tingled in the summer. I put drops in my ears and it helped. A headscarf to cover the ears and, when the wind is strong, also the face.

    • @rheumatologistoncall
      @rheumatologistoncall  4 หลายเดือนก่อน

      Thank you for sharing your experiences. It's important to seek medical advice for such persistent symptoms. I hope you find relief soon.

  • @azizaelbauzroti490
    @azizaelbauzroti490 ปีที่แล้ว +1

    Espoir 😊

  • @shirlburris-fg8eq
    @shirlburris-fg8eq ปีที่แล้ว +18

    Due to sjrogens I'm losing my teeth. Splitting, hollowing,shrinking. 😢

    • @janemcfarren3258
      @janemcfarren3258 ปีที่แล้ว +3

      Same here 😢

    • @shirlburris-fg8eq
      @shirlburris-fg8eq ปีที่แล้ว +3

      @@janemcfarren3258 bless you. I can't get dentures. They would have cut my upper gum to sand extra bone down. I'll wear a mask the rest of my life to hide no teeth.😢 Extreme vertigo damage all my nerves and it caused autoimmune diseases. I even have no flesh in my nose now. Has lesions also from the sjrogens. Painful to breathe through my nose.horrible disease

    • @curiouskitty7972
      @curiouskitty7972 ปีที่แล้ว +2

      Even my fillings are falling out 😮

    • @shirlburris-fg8eq
      @shirlburris-fg8eq ปีที่แล้ว +3

      @@curiouskitty7972 mine too. Have to go in soon to replace

    • @dailyoccasions9539
      @dailyoccasions9539 ปีที่แล้ว

      I going to have all bottom teeth removed and wear a denture on the bottom

  • @RizwanAli-me3yd
    @RizwanAli-me3yd 4 หลายเดือนก่อน

    i have Ra and Sjogran can this be cured ?..i have been taking tablets no result😢😢

    • @rheumatologistoncall
      @rheumatologistoncall  4 หลายเดือนก่อน +1

      It's important to consult with your healthcare provider for the best treatment options for RA and Sjogren's. Keep exploring different approaches and stay positive.

  • @Renuewspa
    @Renuewspa ปีที่แล้ว +5

    Please change your microphone. It’s sounds so muddy. I love learning from you as a Sjogrens and Lupus sufferer.

  • @mindhunter00789
    @mindhunter00789 3 หลายเดือนก่อน +1

    If only there was a treatment for the horrible neuropathy pain we our under treated and left to horrible cronic pain with the only option to get drugs on the street

    • @rheumatologistoncall
      @rheumatologistoncall  3 หลายเดือนก่อน

      I completely understand the struggle. It's tough dealing with chronic pain, especially when it feels like there are limited treatment options available.

  • @christineshields1714
    @christineshields1714 ปีที่แล้ว +9

    Informative video, however, nomenclature matters. At the last International Symposium, the term "syndrome" was replaced with the term "disease". In other words, Sjogren's Disease. Also, the terms "primary" and "secondary" are outdated and should be dropped. Like RA, SLE, and SSc Sjogren's is a stand-alone systemic medical condition that can impact every organ in the body.

    • @rheumatologistoncall
      @rheumatologistoncall  ปีที่แล้ว +5

      Thank you for watching! Majority of patients needs information that is pertinent to their needs and easy to understand. This is not a video for physicians. Once again thank you for taking the time

    • @marybrack6539
      @marybrack6539 2 หลายเดือนก่อน

      ​@@rheumatologistoncall0:14

  • @b_uppy
    @b_uppy ปีที่แล้ว +6

    'Monoclonal antibodies' has me nervous. I have heard that in the news...

    • @dw7939
      @dw7939 ปีที่แล้ว

      Don't get medical advice from the 'news'. Read JAMA or medical journals instead.

    • @dm5129
      @dm5129 ปีที่แล้ว

      Yes, I read about that last night and I tried to get a good understanding of that concept. I don't think that suppressing the immune system with drugs is correct but a lot of doctors do that. The medical Medium always says there is no way your body attacks itself, it is just going after viruses and bacteria and says that the doctors have it wrong. I tend to believe that more because it just makes sense.

  • @user-sg8nd5sh1o
    @user-sg8nd5sh1o 5 หลายเดือนก่อน

    I really appreciate you making this video.
    My ex of 7 years cheated and gave me herpes infection during our relationship and I was devastated.
    You’ve made me feel so much better doctor Igudia and seeing all these people share their testimonies about your cure

    • @rheumatologistoncall
      @rheumatologistoncall  5 หลายเดือนก่อน

      I'm glad the video could provide some comfort during a tough time.

  • @karenmontoya1099
    @karenmontoya1099 7 หลายเดือนก่อน

    Sjogrens is giving me a really hard time I am so tired and fatigue everyday plus the headaches
    Please help😢

  • @tamiwigginton7137
    @tamiwigginton7137 2 หลายเดือนก่อน +1

    It's lyme deases!!

  • @user-kg6jo7oh7y
    @user-kg6jo7oh7y 10 หลายเดือนก่อน +1

    ..... so....where is the good news???? I

    • @rheumatologistoncall
      @rheumatologistoncall  10 หลายเดือนก่อน

      Thank you for watching my video, dont forget to subscribe to my channel for other videos!

    • @sherri7673
      @sherri7673 10 หลายเดือนก่อน +8

      @@rheumatologistoncall umm....people are asking you questions and they are not being addressed when you say "thank you for watching my video." Can you answer some of the questions because I have the same ones. What can be done for seronegative patients? Can any of these treatments address the dryness? If seronegative patients don't get treated, what will happen? All excellent questions and not being addressed. Thank you.

  • @HotSeat17
    @HotSeat17 17 วันที่ผ่านมา

    Why do doctors immediately rush to pharmaceuticals? Why don't they treat the diet first? I went on Carnivore, after decades of hell. Most of my symptons are gone, including my floaters and cataracts in my eyes. My eyesight has improved significantly! That was a bonus!
    I am not a doctor, and this is not medical advice. I just suggest people research this lifechanging, lifesaving incredible way of life. I will never go back to the SAD (Standard American Diet).
    Side fact: The Greek word "PHARMAKEIA" in the Bible translated to English is "sorcery", or 'witchcraft". This is where we get our words pharmacy, pharmacist, pharmaceutical, Big Pharma, etc. from. Just saying....

    • @rheumatologistoncall
      @rheumatologistoncall  16 วันที่ผ่านมา

      It's great to hear about your positive experience with your diet change! It's important to consider all options for improving health.

  • @kater8730
    @kater8730 2 หลายเดือนก่อน +1

    I stopped watching after the first minute. Chemicals and prescription drugs cause more problems!!!

    • @rheumatologistoncall
      @rheumatologistoncall  2 หลายเดือนก่อน

      I appreciate you sharing your perspective. It's important to consider all viewpoints on this topic.

  • @carolciviletti9044
    @carolciviletti9044 8 หลายเดือนก่อน +4

    I thought this was going to be helpful. But it seems to me there is nothing to help yet. Disappointing 😢😢😢

    • @vivavita3769
      @vivavita3769 5 หลายเดือนก่อน

      This is a dreadful disease and l haven't found help either.