1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

Sjogren's sufferer - what blood group

Posted , 15 users are following.

caroline-ian
caroline-ian

Hi, I'm new to this forum! I was finally diagnosed with Sjegren's only a year ago, however, I was diagnosed over 4 years ago with either Sarcadosis, Sjegren's, PBC for some reason were not conclusive. Understandably, due to the initial uncertainty of my condition I have begun to research our vast world of information. I have been looking into each sufferer's blood group. I would appreciate your feedback if you suffer with SS, on your condition, diagnosis and blood group. 

3 likes, 32 replies

32 Replies

Next
  • frustrated61
    frustrated61 caroline-ian

    Posted

    Hi Caroline ~

    I have Sjogrens and Sarcoidosis, the sarcoid is of the lungs, lymph nodes, cartiledge of the ears and nose, eyes, skin, gums and heart.  I was dx'd with sarcoid in 2005 and sjogrens in 2013.

    My condition as of today, is that I'm seeing the Rheumi and Pulmonologist this week and treatment will begin.  Afterwards, further testing of the heart.

    Every 6 mths I have to have a brain scan to make sure the sarcoid hasn't effected that are.  The tiredness that comes with this disease is just sometimes too much!  Pains in the joints etc...I don't know how much of the pain is attributed from the sarcoid or the auto accident I had in 2004 and again in 2013.  Anyway, that's an ongoing problem. 

    When you say, blood group, do you mean blood type?  I guess I've never heard that term before, so excuse my ignorance.

    How is your condition and dx thus far?

    Frustrated

    • caroline-ian
      caroline-ian frustrated61

      Posted

      Hi, I'm sorry, you truly do have a plate load! Yes, I do mean blood type! I'm new to this forum and have made a few vital spelling errors but can't find how to edit sad if you know i'd appreciate it!

      I have severe dry eyes, liver problems, granulomas affecting heart, lungs . . pretty similar to you but that also includes my liver. The one thing I've been looking into is whether SS sufferers share the same blood group. I have in the past had 6 miscarriages so at one point Lupus was a consideration. I so believe that environment and diet effects our condition, also our immune system is basically fighting something alien which it does not recognise. I have recently gut out all GM, only eat organic. I have taken wheat and gluten out of my diet too, but it's the blood I'm most intrigued about. What blood type are you?

    • frustrated61
      frustrated61 caroline-ian

      Posted

      Caroline ~

      Thank you for clarification! I'm blood type O positive.  I, too in the past have had difficulities with my pregnancies.  Losing one pregnancy while 6 mths pregnant, a tubal pregnancy and three miscarriages.  However, grateful I have two beautiful grown daughters.

      I agree with you regarding enviornment and the possiblites of "fertilizers" put into the growth of our produce. 

      May I ask your blood type?  Interesting concept!

      Frustrated

    • caroline-ian
      caroline-ian frustrated61

      Posted

      I am rehesus negative! I have had x6 miscarriages, but I too have two beautiful sons! I'm intrigued with the antigens and wonder whether your two could possibly be rhesus negative?
    • frustrated61
      frustrated61 caroline-ian

      Posted

      Hi Caroline ~

      Curious, have you found a connection with blood type and sjogrens?  I'm reading some have O positive and R-negative, so far I'm confused smile but that's not unusual  lol  Anyway, I'm truly hoping that this ends up with some correlation related to blood-type.  Just sayin'

      Frustrated

    • caroline-ian
      caroline-ian frustrated61

      Posted

      I'm unsure at the moment. There are around one million sufferers in the UK, 90% are women aged between 40-60 - after child bearing years. I too am hoping there will be a connection! I will keep you updated! x
    • babycham
      babycham caroline-ian

      Posted

      Hello Caroline- ian & all,   I do believe genes do play a part in sjogrens, well all auto immune diseases, not all of the time. Also diet, it makes so much sense what we put into ourselves to give us nourishment and energy, will have an impact. I don't know how many of you saw the program where someone lived on mc Donald's food for a month so  Dr's could check changes on the body, SO  Interesting!! When you cut wheat out does that mean no bread at all!! I do always go for wholemeal /seeded bread which I do like. I don't eat meat & find it hard to get much enthusiasm for food to tell the truth. My eye Dr told me I needed a very very high dose of emega 3 & the company to get it online.
    • babycham
      babycham

      Posted

      Hiya again everyone, Can you all get back to me if you know anything about or are on hydrocquine? I have just started taking it would be interested in any thoughts, thanks...
    • frustrated61
      frustrated61 babycham

      Posted

      Isn't that the generic for plaquenil?  If so, I took that along with methotrexate.  Not sure what you need to  know?  I can say, I was nauseated all the time but I believe it wasn't from the plaquenil but the methotrexate.  I did lose some hair, again, the chemo, methotrexate.  

      Can you elaborate as to what you're asking?

      Frustrated

    • frustrated61
      frustrated61 babycham

      Posted

      Autoimmune diseases can compromise your system when one doesn't get the right amount of sleep.  It's while you sleep, when the immune system is built back up.  So, if anyone on here is a light sleeper or hardly sleeps, it's almost a given, your body would take a hit with autoimmune diseases.  I cannot find anywhere that "genes" play a role in sjogrens or any autoimmune syndrome...Babycham may I ask how you found this out?  Doctor's don't even know the real cause of sjogrens or sarcoidosis etc...I see some of the top doctors in the States for sjogrens and they've practiced with doctors from abroad and this finding seemingly is world-wide.  So, I'm very much interested in how you found this out as I'm always looking for a link.

      Thank you

      Frustrated

  • ally82777
    ally82777 caroline-ian

    Posted

    Hi , 😷. I'm rhesus negative ,, please keep me posted over the blood type. I'm really keen to know as much as I can about this miserable disease xx
    • caroline-ian
      caroline-ian ally82777

      Posted

      I too am rhesus negative. I hope you don't mind me asking but have you had several miscarriages?
    • ally82777
      ally82777 caroline-ian

      Posted

      Yes ,,, I've had about five. I do have four children though so I am very blessed xxx
    • caroline-ian
      caroline-ian ally82777

      Posted

      Hi, were you offered the Anti-D injection after - at 28 weeks and after birth  (to include the miscarriages)? xx
    • ally82777
      ally82777 caroline-ian

      Posted

      Hi. Yeah I had anti d after all births and miscarriage s. Do u think there is a connextion ? Xx
    • caroline-ian
      caroline-ian ally82777

      Posted

      . . I am hoping, but maybe I just read too much. I am still interested in some of my blood results and the connection to antigens. I will keep you updated! Have to say, I'm so happy for you that you managed 4 healthy children. I devoted 10 years of my life trying to understand why I kept miscarrying! xx
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.