Sjogrens Syndrome too?

Discussion in 'Fibromyalgia Main Forum' started by ClaireM77, Jun 24, 2013.

  1. ClaireM77

    ClaireM77 Member

    Hi everyone, I'm new to the forums.
    I have ME/CFS and FM but have recently been diagnosed with Sjogrens Syndrome too. The Rheumatologist that I was running behind so my appointment was rushed, I got the confirmation of Sjogrens following a lip biopsy and was given a prescription for Hydroxychloroquine and that was it. It was only afterwards when I tried to run the conversation over and over in my brain to remember it that I realised she didn't mention anything about if it was Primary or Secondary. I was wondering if anybody else has it and has been told it's secondary to M.E.?

    Technically I think it's usually said as Secondary to something like R.A. or Lupus but it could be to M.E. (once it's finally recognised for what it really is).

    Thanks, Claire
  2. mbofov

    mbofov Active Member

    I don't know anything about Sjogren's but wanted to say welcome to the board. One of our very long-time members, Mikie, did have Sjogren's and I believe it was mostly eliminated through a series of peptide injections. You might try doing a post directly to her asking about Sjogren's.

    I also wanted to suggest you look into a product called Moducare. My immune system is weak and this has been amazing in helping me deal with a chronic debilitation sinus infection. It is supposed to balance and strengthen the immune system and it really does work. There is some anecdotal evidence of it helping with Sjogren's and rheumatoid arthritis.

    Good luck - I hope someone is able to answer your questions re Sjogren's -

  3. Nanie46

    Nanie46 Moderator

  4. Nanie46

    Nanie46 Moderator

    Here is a link to a comprehensive video presentation about the connection between infections and many different autoimmune diseases.

    "Autoimmune Disease: The Infection Connection" with Dr. Nikolas Hedberg

  5. Mikie

    Mikie Moderator

    After years of FMS, CFIDS/ME, and arthritis, I developed Sjogren's. My eye doc found it with a brand new computerized dry eye test. Of course, I had the usual dry eyes and mouth before the diagnosis. The worst symptom was bone-crushing fatigue. My peptide shots have gotten rid of all my symptoms. I subsequently have found that, like a LOT of people, I'm allergic to wheat, causing fatigue and digestive issues. Since giving up wheat in my diet, I'm back to feeling well. But, I digress...

    The first night of the very first peptide injection, my eyes watered and I drooled like a dog over a pork chop. There are very few docs who are able to do the peptide injections but they have been successfully used in Europe for decades. The ones my doc uses were developed at Oxford University and their research facility. The FDA approves them here but no insurance co. I know of pays for them. Mine were $300 per shot and I got them monthly for a year. My last one was 7 months ago and I'm still going strong except for the wheat thing and a recent shoulder surgery.

    Good luck to you. BTW, Venus Williams was diagnosed with Sjogren's and said she was too tired to even lift her tennis racquet. She's now back to playing but not singles, just doubles with her sister, Serena. She hasn't explained how this is possible. I just wonder whether she is taking the peptide injections.

    Love, Mikie