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

I think I have Sjogren's need info

Posted , 14 users are following.

amkoffee
amkoffee

I am just sure I have Sjorgren's syndrome as I have every single symptom. I have an appointment to see my doctor on Tuesday. My question is can this disease be diagnosed with blood work or does it have to be diagnosed with a lip biopsy? Should it be brought up to my GP or to my rheumatologist. I have an appointment with both doctors coming up. Which is better to handle this disease?

1 like, 18 replies

18 Replies

Next
  • margaret22116
    margaret22116 amkoffee

    Posted

    It can be diagnosed without lio biopsy and on blood work alone. But diagnosis can be tricky so if it is not being confirmed by blood work sometimes a lip biopsy is used to try to confirm diagnosis.
    • SharonFromBama
      SharonFromBama margaret22116

      Posted

      I would mention it to both but the rhuemy would treat it. There is a fairly new blood test called the Early Sjogren's Profile that I recommend. It isn't just for early detection but it can be more accurate than other tests.

  • jennifer09136
    jennifer09136 amkoffee

    Posted

    Essentially a rheumatologist will manage you and your symptoms, but you need a good GP alongside as this will be the person you see more regularly and who needs to be alongside you as well as the rheum. I have had SS for 32 years and have never had a lip biopsy as the bloodwork and symptoms have always been so definitive.
    • amkoffee
      amkoffee jennifer09136

      Posted

      I have a very great GP but I also see a rheumatologist for another autoimmune disorder that I have. And I suspect that when I bring it up to my GP he's going to tell me to talk to my rheumatologist about it. Frankly I don't care who manages it as long as it's managed. I didn't know there were drugs that I could take for this disorder.

  • gretchen37301
    gretchen37301 amkoffee

    Posted

    I would ask your rheumatologist since he or she will know which tests (ANA, SSA, SSB, etc) to run and which medicine to prescribe. You could get a lip biopsy as an alternative. An eye doctor can also do a test to see how dry your eyes are and get you on Restasis or other eye drops.
    • amkoffee
      amkoffee gretchen37301

      Posted

      I've been battling dry eye for a couple years using the various types of treatments. My eye doctor is very homeopathic. But we have just decided to use Restasis. I'm on my 4th day of treatment and seeing some improvement.

  • deidra40034
    deidra40034 amkoffee

    Posted

    Hello amkoffee,

    Sjogren's is a very difficult thing to diagnose indeed, as it mimicks many other auto immune diseases.  It can take years!  You might think you have one thing, and have another.  Or you will have one, and with Sjogrens, you will also have at least another, if not a few others, as this is not unusual with auto immune issues. 

    The main doctor you will need is a Rheumatologist, but you will need a good internist as well.  With me, my Sjogrens has gone inside to my organs, so I also have a Gastro, and a Kidney specialist.   Not everyone gets to this point however.  You will just have to make sure to follow your doctor's advice, and read up on as much information as possible.  AND, if you are not comfortable with one doctor, find another!!!  Not all doctors know what they are doing when it comes to Sjogrens!!  There are some great meds out there that can help, as there is no "cure".  Some people say diet works for them, I eat very healthy, and have tried many of the ones that some have said helped them, but it did not work for me.  So you will have to make those choices for yourself.  You do what YOU feel is right for you!!  AND what works for you!!  For me, only the meds work, and have helped me, I waited too long, and to my detrement, and now am in kidney failure, but the new meds are helping my kidney's and I am feeling better, but I will be on these meds for ever from what I am told.  If I had only done what I should have in the beginning, I would not be in this mess now. 

    I wish you good luck!!  Keep us posted!!  You can always come here, as there are a lot of us to talk to!!

    • deidra40034
      deidra40034

      Posted

      I just was reading one of your replys about meds...one of the meds I am taking now that helps the dry mouth and eyes is Imuran.  I can not take the Plaquenil which was one of the main ones, and I took...it worked great!...but it caused damage in my eyes in the first 3 months, and had to be taken off of it immediately.  So, I am on Prednesone, and Imuran, and several other meds for my kidneys and intestines and stomach.  Unfortunately, at the moment those are all I can take...but my reaction to Plaquenil is not common, most people can take it without problems, and it does work wonders for most!  I just wish I could take it.  The issue with the eyes, is NOT reversable when you stop the Plaquenil, so your doctor should tell you, you have to see an Opthamologist every 3 months while you are on this med!!! 
    • amkoffee
      amkoffee deidra40034

      Posted

      I already have a rheumatologist because I have another autoimmune disease. And I'm on prednisone and methotrexate for it. But I realize now that I've been suffering from Sjogren's for much longer then I have the other disease. So I will go to my rheumatologist and see what she has to say and go from there. Thank you for your info. I am sorry to hear about your problems. I hope you get better.

    • margaret22116
      margaret22116 amkoffee

      Posted

      Hi. I was trying to message you but it wasn't quite working. I have all the symptoms of Sjogren's but don't have it. All of these auto immune diseases mimic each other and treatment is often similar. I have Behcet's and am treated for that. In a way it doesn't matter if I have Sjogren's too. Treatment us same really x

  • Tumtum1963
    Tumtum1963 amkoffee

    Posted

    Hi - I was rediagnosed with primary Sjogrens by lip biopsy. Just over five years ago I was diagnosed with RA but it turns out that this was Sjogrens mimicking RA. I've been moving around after a year (2015) when I had Pneumonia, Pancreatitis (from Azathioprine/Imuran) and sepsis all in succession.

    No one thought it was in my head because my inflammatory markers soar when I'm ill or flaring. But because I was treated with steroids and various DMARDs including Hydroxichloraquine and Methotrexate (two years) my antibodies were only equivocal or negative.

    So finally, last year, in my third hospital off all drugs (severe reactions) - my ANA came back a clear positive but my ENA panel was negative still. On the strength of ANA, raised immunoglobulins and symptom of widespread small fibre neuropathy, the new rheumy (now retired) requested a lip biopsy which came back very strongly and definitively for Sjogrens. However this is still classed as seronegative Sjogrens and the doctors seem reluctant to treat it with anything other than Gabapebtin or Pregabalin. I've battled for a trial of Mycophenolate (Cellcept) because I did not want my neuro symptoms to get any worse. This seems to be the first drug I've tolerated well and I think it might work. If it doesn't I have been told I won't be offered further treatment but will be reviewed every six months for signs of organ involvement and lymphoma.

    Sjogrens is a great mimic but also a very misunderstood and underestimated disease. I believe I've had it for many years now and it's affected my thyroid and nerves quite severely. I hope my story is helpful to you.

  • sharon54739
    sharon54739 amkoffee

    Posted

    I've just recently been to see a rheumatoid specialist on this disease and just had schirmers test twice both revealed possible sjogrens just waiting for a mouth biopsy and scans ..my rheumatoid specialist is without doubt the best professional I av ever seen regarding health ..I diagnosed myself and demanded a second opinion on this disease as through my GP he actually had never heard of the disease but refused to leave with a referral...I just got a letter today saying all tests are showing its primary and not secondary hope this helps and you get sorted x

  • christine_73623
    christine_73623 amkoffee

    Posted

    Some people can have many symptoms the only reason i was diagnoised 22 years ago, that all the syptoms had come together,

    I had glands that were the size of golf balls

    i had no siliva in my mouth at all  I drank water day and night

    I could only eat a small amount of food a little meat, and a few vegetables i lost so much weight i was very skinny

    I also had extreme fatique all the time, all of this and i had 3 children to look after and one was a baby,  i had a lip biopsy, but i was extremley ill for about 3 years and went into remission for a long period of time,, but i needed the answers and kept pushing untill i had them, it was actually very hard to get a diagnoisis back then, and now another 3 of my siblings have been diagnosied with auto immune disorders since then,

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.