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Thread: Is there a link between strep and lupus?

  1. #11
    Join Date
    Jun 2009
    Long Island, NY
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    Quote Originally Posted by maine View Post
    Hi! I am a new member of this group. I have not been diagnosed with lupus, but have been diagnosed with chronic rheumatic fever. I still have some fears that I have lupus, though, even though I do trust my rheumatologist and know that with either diagnosis I am getting the treatment I need. I find a lot of support from this website because my symptoms are so similar and I can't seem to find any cases of anyone who is suffering from rheumatic fever for as long as I have (4 years). My grandmother suffers from very severe lupus and my current rheumatologist all but diagnosed me with it. At my first visit, he said that he thought I probably had it and sent me home with information, with the catch that he didn't want to say for sure until he had run his own lab work (he didn't trust my last rheumatologist and neither did I!) When I came back, he said my ASO titre was extremely high and that I probably had rheumatic fever. As I have continued to go back, those numbers have gone down, so it seems to maybe fit. The problem is I still don't feel well. I am doing better, but it seems more due to my meds (prednisone-mobic-plaquenil-and penicillin for the fever). I asked him if he thought I would get entirely better (most people do within 6weeks to 6 months) He said I would probably always stay like this unless by some chance I went into remission. I really do trust this doctor, so I don't doubt that I have rheumatic fever and he is the kind to address this problem first, and if needed, then he will adress the next. I guess I'm just curious to know if elevated ASO titres are ever a part of lupus or if anyone has ever heard of a story like mine. I can't find anyone with symptoms as severe (I spent life in bed for a year) or as long lasting. THanks for letting me vent-that helps too!!!
    Hi Maine, welcome!

    Reading your post made some connections spark for me. I have not be diagnosed with Lupus yet either but I have been diagnosd with IBS, Lactose Intolerance, Spastic Colon, Diabetes, Reynaud's, Sarcoidosis and likely CTD. I also had 2 previous doctors tell me I have Mitro-Valve Prolapse (ECCO & Cardiologist said no this year to that & no other dr ever has heard it) and Rheumatoid Arthritis or Psoriatic Arthritis (she wasn't sure which but thought it likely it was one of the two). Oh yeah, I also have Psoriasis. (Sometimes I even forget all my "labels" ).

    I never made the connection with Strep before, but it makes sense to me too. When I was younger, there was a period of about 5 years from 13-18 that I had strep every year two or three times a year. That PCP was at a point with me where if I had it one more time, he wanted to remove my tonsils because he said the strep was giving me tonsilitis. Luckily, that didn't happen and when I went to college I seemed to switch from annual Strep to annual bronchitis.

    I had a doctor who thought I had Lupus 4 or 5 years ago when I kept getting sick one thing after another (Uticaria, Pityriasis Rosacea, Shingles, Chronic Sinusitis, Hay Fever) for about 6 months but he dismissed that when the blood did not support the diagnosis. I didn't know anything about Lupus at the time or I probably wouldn't have let him drop it that easily.

    Since then, my common symptoms are all over random rashes as well as a mylar rash, joint pain/swelling, fatigue, insomnia, light sensativity, temperature sensativity. On a good day, I only deal with 1 or 2 of them.

    With all the things I deal with, I am lucky to say that I am completely med free and keep pretty well controlled by watching my diet and stress. I also am lucky in that my flares seem to spread far apart. It seems like I am really healthy for a year or two and then really sick for six months to a year.

    I am so thankful to have found this site. Everyone here is compassionate and understanding. Here I feel like I BELONG and am UNDERSTOOD. I am glad you have found us and are no longer feeling alone.

    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.

  2. #12
    Join Date
    Aug 2013
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    I would love to see research on this

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