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  • Lupus & Sjogrens?

    Hi,

    I am new to this site. I found it only the other day. I am a 56 year old woman. When I was in my 30s I began having all kinds of bizarre (to me) symptoms. I was diagnosed with Sjogrens Syndrome about 8 years ago after a blood test showed I was borderline lupus. My doctor refused to investigate further saying it was a fluke. (The same practice told me I wasn't really menopausal at age 32 because I was too young. I have been post menopausal for about 12 years now). By the time I had this blood test showing borderline Lupus I knew better and switched doctors.

    I have no doubt that I have Sjogrens especially with an Anti SS(ro) of 1860 but I have so many Lupus symptoms, some of which may be symptoms in common with Sjogrens but others I have doubts about. The most suspicious thing is a partial rash that I developed on my right cheek about a year after the Sjogrens diagnosis. Before then, for about two, three years I had a blush type rash across my cheekbones and nose. It ranged from very light pink to deep red. It was not consistant. It doesn't appear as often now but I still get it. I get low grade fevers, a chronic sore throat, extreme fatigue/exhaustion during what I consider 'flare-ups', severe respiratory infections once or twice a year minimum and sometimes bronchitis, and long term sinus infections. Skin rashes come and go. They take a long time to to away. I had shingles on my face about 5 years ago. I am photosensitive. I have arthritis but that is supposed to be secondary to the Sjogrens. I feel cold a lot. I sometimes wear a coat and even hat when others are wearing shorts and tee shirts.

    This is the short list. I just am not convinced that Sjogrens is the sole cause of all this. I get the same gut level feeling I had when I originally switched doctors and insisted on more testing. The rheumatologist I found then was wonderful but moved years ago. My current rheumatologist just doesn't seem all that concerned about my "chronic" complaints so I have begun to avoid going in. I have not pursued it too aggressively because Sjogrens seems to be treated similarly to Lupus so I figured I was at least getting the right meds.

    This current flare-up (haven't had a bad one for a couple of years) has me drained beyond belief. I am beginning to think that if I do have Lupus in addition to the Sjogrens it might be a good idea to find out in case there is more or something different that could be done. Any thoughts on this? Is it always this hard to get a plain simple diagnosis? I have read my 'electronic' medical records and half the things I tell them don't seem to be on them. I am so frustrated.

  • #2
    Hi Jacey,

    Welcome to the lupus site.

    Here is a good web page.(actually on this site) You might want to look over.

    http://www.uklupus.co.uk/isitlupus.html

    Many of us overlapping problems. I have sle, hypothyroid, heart failure, Raynard, and some more.

    I would change doctors and find a rhumey that knows lupus. Not all rhumeys know about lupus.
    You can take pictures of rashes because more than likely they wont be there when you see the doctor. Write down when, how long they lasted and went away.
    Writing down symptoms is a good plan too.

    Have a look around the site and post any questions you might have.

    The members here are very friendly and will share their experiences on dealing with their lupus. We also have a chat room where you can go and talk to other members.

    Take care,
    Lyn

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    • #3
      Hi Jacey and :welcome:

      I'm with Keebler I would try and find a new Rheumy who is very familiar with the connective tissue diseases, not all are. You could ask on our find a doctor forum for recommendations.

      Actually a high Anti Ro is common for both Sub Acute Cutaneous Lupus (SCLE) (very photosensitive btw) and/or Sjogrens.......................Anti La is more exclusive to Sjogren's. So if you had these rashes at the time and the photosensitivity they must have had blindfolds and earplugs in

      More info on SCLE (there are several pages if you scroll down to the bottom)

      http://emedicine.medscape.com/article/1065657-overview

      More importantly what meds are you taking to control your condition and are they helping?

      love
      Lily

      Comment


      • #4
        Thank you Keebler (Lyn) and thank you Lily for your thoughts and for the warm welcome. And for the new sites to visit which I will do this weekend. (Not putting it off, just work full time). I am also going to research new doctors this weekend.

        It is very helpful to know that high anti-Ro also indicates Sub Acute Cutaneous Lupus. I've wondered about the blindfold and earplug thing myself.

        Lily you asked about meds. As follows:
        1) Plaquenil: 400 mg/day
        2) Salagen: 20 to 40 mg/day (to help induce saliva production)
        3) Protonix: 80 mg/day (for reflux)
        4) Restatis: .05%: eyedrops 2x/day (dry eyes)
        5) Lunesta: 1mg - 2mg at night (to sleep)
        6) Bentyl: 10-20 mg/day (colon spasms) I don't like this stuff and am trying to control them with diet, seems to be working somewhat
        7) Vicodin: (I try to minimize the use of this as it leaves me woozy)
        8 ) Various, miscellaneous, assorted and sundry cortio-steriod creams for various, miscellaneous, assorted and sundry rashes

        I had Prednisone at some point near the beginning but made them take me off of it as soon as I learned more about it.

        In general the meds help and sometimes I feel almost normal but when I have these 'flare-ups' the meds don't feel like they are helping. I have to remind my self that the flare-ups would probably be worse without them. Going to the doctor or rheumotolgist during a flare-up has proved to be a pretty futile and frustrating experience.

        Oh boy Lyn, you sound like you are having fun too. Your idea about photos is a good one and especially about writing down the symptoms. I am looking forward to visiting the chat room too.

        Thank you both again. Happiness & health to you both.:rotfl: Warmly,

        Jacey

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