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Thread: Diagnosed already with Sjogren's

  1. #1
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    Default Diagnosed already with Sjogren's

    Hi everyone, I am 54 old female. I live in Ontario Canada. I already belong to Sjogren's World, and now that I am very close to being diagnosed with Lupus, I thought I would get to know more about Lupus.

    RA, and Lupus runs in my family. I believe I have been dealing with lupus symptoms now for over 20 some years. My dermitologist misdiagnosed me with what he thought was Porpheria (or at least the start of), back 20 years ago. The sun causes the rashes on my face and arm, which causes my severe sleep apnea, to go into over drive. I have so many allergies. My health is a mess. I have lots of depression also.

    After finding out they did the same thing to my sister. My sister was later diagnosed with RA and Lupus. I now find I am following in her foot steps.

    I am going in for a Celiac biopsy September 4, 2008. They say it is not uncommon for Celiacs to have Sjogren's, Lupus (soon to be diagnosed), liver problems, as I have.

    Please ask questions, I very much need to understand what I am going through.

    Oh yeh, I can never have medication because of allergies, and liver disease (NASH - non alcohol fatty liver disease with inflamation).


    Gerri

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    Hi Geri,
    Welcome to the site. I am sorry that you are going through so much. I have Lupus and Sjogrens, Celiac Spru and Pernicious Anemia (Megaloblastic) I guess is the other name for Pernicious Anemia. I am sorry to hear that you have liver disease with it all. I don't have that problem that I know of. I am taking Plaquenil, Sulindac and Imuran and have to have B12 shots every month. I hope that you can get some answers. There are a lot of nice people that comes here and that are very knowledgeable. Please keep posting.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  3. #3
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    Hi Kathy, thank you for the warm welcome.

    I have to deal with all this without the use of medication. I am hoping to find somethin that won't affect my liver, or I am not allergic to. So far doctors just look at me and throw the hands up in the air.

    I don't know what B vitamin niacin is but MAN, can it do a number on my liver.

    Just added niacin and Vitamin D to my allergy list. Hoping after I get diagnosed with Celiac (Sorry change that). Right after my biopsy, I am back on the Gluten free diet it suppose to help slow down Lupus and right now I am in a race car to quick end.

    Hugs

    Gerri

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    Hi Geri,
    I feel so bad for you and will keep you in my prayers. I hope with all my heart that they can help you. What caused the liver damage? I will keep you in my prayers and I send you a big cyber hug.

    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  5. #5
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    Hi Kathy,

    My GASTRO, is thinking Celiac, and/or my severe allergies to sulfa, sulfites, sulfates, sulfur and all derivatives, Sjogren's and Lupus???.

    Too much going on to be sure one way or another.

    Can't even have a good drink??? Never drink alcohol anyway, but I must tell you there is times I wish I could.

    Hugs

    Gerri

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    Hi Geri,
    I am in the same boat as you. I can not in anyways drink and sometimes I wish I could, but boy one drink and I get deathly deathly sick like immediately. There are times like you said that I wish I could have a drink. Oh well.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  7. #7
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    Hi Kathy

    I am looking at your medical history, boy we look like a carbon copy (nearly).

    My family doctor said I didn't have Celiac. After my GASTRO seen how I improved off of gluten, she said she believe that in fact that she believes I do have celiac. At any rate I am back on gluten, and will be off it again as soon as biopsy is over. My family doctor originally took me off gluten, for an indefinite period of time, never to go back on it. He thought it would slow down the Lupus Sypmtoms, and Rheumatory Arthritis.

    Hugs

    Gerri

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    Hi Geri,
    I think that we do have a lot of the same problems other then the liver problems. I don't seem to have liver problems yet, but who knows what the future holds. I have to watch out for a lot of the medications too, due to allergies, mostly to sulfa drugs. Isn't it strange that we could have a lot of the same problems. I have a twin sister that has Celiacs Spru, but not the Lupus and other things like me. I jsut got the diagnosis for the Pernicious Anemia about 4 monhs ago, when boy oh boy my tongue got horribly sore and the sores showed up in the corners of my mouth and wold not heal. I also had shortness of breath and fatigue like you would not believe. I had the tingling in the hands and feet and felt weak beyond words. I am now on B12 shots and that helps a lot. It is strange though that our histories are a lot alike. Hmmm makes you wonder doesn't it.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  9. #9
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    Kathy,

    I have canker sores off and on, I find they are more so when I have too much sulfites, sulfates, sulfur, or it could be just plain lupus. I also get sores at corner of my mouth, they are slow to heal, like my bruises, and bruise like marks, that come out of no where.

    I am border line Anemic. I can never give blood again, because my iron does not rebuild itself.

    My hands and feet are so week, I can't bruise a fly, if I was to hit one . I drop things so often.

    I am so tired all the time, it's hard to get anything done.

    I think I am going like this site. I feel at home already, because all my symptoms are familiar .

    Hugs

    Gerri

  10. #10
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    Hi Geri,
    I think that you need to have them test you for Pernicious Anemia and Vitaming B12 deficiency. It sure sounds like you are B12 deficient from the sores in the corners of your mouth and the slowness of them healing. Don't let it get to the point that you have probems breathing ok. Have them to test you for Pernicious anemia.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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