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Thread: Is there a link between strep and lupus?

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    Default Is there a link between strep and lupus?

    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!!!

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    Hi Maine,

    First of all, welcome to our family.
    I did have rheumatic fever, when I was 10, in 1966. I was very ill for about two months. At age 24, pregnant with my second child, I had hemolytic anemia ( hemoglobin at 2.6, I almost died), at age 28 I was dx with mitral valve prolapse ( reason -rheumatic fever). For many years I was very fatigued and every doc said, it's because of the mitral valve in my heart. But then in 1999 the joint pain started and finally in 2006 at age 50, I was dx with lupus and RA. So there might be a connection between rheumatic fever and lupus. Hopefully you will get an answer soon.

    Debbie

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    Thank you for responding so quickly. Your information is helpful. I currently am 35 and started having some problems with stiffness and fatigue when I was pregnant at 30. I had the baby and 6 days later had to be hospitalized for pre-eclampsia. Fortunately, the medications prevented me from having a seizure. I continued to be ill after this. I was extremely fatigued, had a lot of stiffness in my ankles, knees, and hips, and had trouble with breastfeeding. About a year after giving birth to my baby, I woke up to extreme heaviness and a feeling of swelling in my legs. It reminded me of the pre-eclampsia, but my blood pressure was fine and after a few days I was completely back to my normal self. Then about 2 weeks later, it happened again. Then went away. 2 weeks later, it was back. This time I had pain in my feet joints. This cycle continued, but each time it came back, the pain advanced to a new area. THe pain is always both hands, or both knees, etc. It is also very migratory and moves from locations quickly. Eventually, it progressed to where I was just in pain all the time. I started having heart palpitations at night and felt like I had ran a marathon every time I got up to use the bathroom! My fingers started turning white when I was exposed to the cold which I know is raynaud's since my mother deals with that. I finally went to a doctor. First, I was diagnosed with thyroid disease. Then I found that I was now insulin resistant. Finally, I convinced my doctor that I needed more help and he sent me to a rheumatologist. He diagnosed me with hypermobility joint syndrome and said there was nothing he could do. He sent me home and basically told me to lose weight and have my husband help me more!!!!(even though I had always been physically fit until I had been forced to become immobile-and my husband was taking care of the baby at night) I went back because he was the only rheumy around that worked with my insurance and his PA diagnosed me with rheumatoid arthritis because(these are her words) "I responded to the steroid shot" she gave me. I just never felt comfortable with this doctor and finally my insurance allowed me to change to my current one and the rheumatic fever diagnosis. I have confidence in him. He has really helped me. I am back to having flare-ups rather than in pain all the time. My flares seem related to my menstrual period and traveling and stress. So now I just am unsure of where to go from here. Should it be taking this long to get over rheumatic fever? I started taking daily penicillin 2 years ago. OOps! I forgot to add that one of the first symptoms of a flare that I get now is extreme muscle fatigue. I can't even comb my hair, put on make-up, or hold up the TV remote for very long. My poor daughters go to school without their hair fixed somedays because I can't keep my arm raised for that long. Is this common?
    Last edited by maine; 09-02-2009 at 09:59 AM.

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    hi maine,

    welcome to the place where you will find the answers to the many questions that accompany a diagnosis with any chronic disease. The members here are so compassionate, and i can attest to the knowledge that members will happily share with you. I was so frightened, and had so many questions when i was first diagnosed. I joined this forum, and now i am successfully learning to live with lupus. I know you will find the same comfort that i did.

    second, i do not know about a relationship between rheumatic fever and lupus, but it certainly makes scense that there would be one. I had rheumatic fever as a child, but have not had any other issues. I have not heard people talk about the ASO titre, so i can't help with this either....but, be patient.....there will be others along very soon who will be able to address this question for you.

    You expressed concern about your first rheumy's PA saying she suspected RA because you responded well to the steroid shot....my rheumy (whom i trust 100%) used a medrol injection (steroid) to help with the diagnosic process. she said lupus would respond to this shot where other diseases would not....so, the PA may not have been very far off on this call.

    You say your dr. has you on Plaquenil...this is the main med for treating lupus....so, you are already being treated and your med probably won't change even with a diagnosis. Plaquenil can take up to 6 months for relief to begin, so you may have to wait a while before you will know if it is working. Also, many people take steroids to help with swelling and joint pain, so, again, you are already on track. Hopefully, these meds will help you feel better very soon.

    I like your description of the flares as being "migratory"....that is so descriptive of lupus....the pain moves around at will, and comes and goes at will...the beast has a mind of its own. It also appears to be common for flares to come along every 3 weeks or so (like the menstral cycle).

    Your symptoms certainly sound like lupus, but there are other auto immune diseases that mingle together, so diagnosis can be very difficult.

    Along with your meds that are typical for lupus treatment, i recommend that you start to incorporate the different methods that we use to keep flares a minimum....if they work, this would be very beneficial for your dr. to know while he is searching for a diagnosis. There is a great thread written by Olluwa that describes these methods, so go to her thread and see if anything helps.

    Also, start a journal of symptoms that come and go, and any that you have had in the past....take this to your dr. and this will also help him make the diagnosis.

    I will quit rambling....more help will be along soon....take care and stay in touch.
    Phyllis

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    Thanks for the info. and support. You're probably right about my old rheumy using the steroid shot to help with diagnosis. I guess I must be starting to become bitter towards doctors!!!! But I should give credit where credit is due. I am glad I changed doctors, though. The last one just was not taking me seriously and I wasn't getting the help I needed. Thanks for the words of encouragement!! Greatly appreciated!!

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    Hello and welcome Maine to the forum and im sorry to read about what you are going through.Ive not yet got a diagnosis,well i did once but its a long story so im fighting the doctors at the mo to take me serious and stop the pain and help me sleep. I too have lived in my bed for many years due to ill health,but will keep fighting till SOMEONE HEARS ME!!
    I hope you settle in ok here as everyoe are nice n very caring.Enjoy your weekend also.

    love Amanda.xxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Maine, I am brand new here, and I came across your message. It's a very interesting one to me. First, it sounds as if your rheumatologist has possibly diagnosed you with BOTH rheumatic fever and lupus. The reason I say this, is because the meds you are on are drugs that are prescribed for lupus. Your post is so interesting to me, because my daughter has been extremely ill over the past several years, and her bouts of extreme illness occur following strep infections. At first I thought it must be rheumatic fever, but she also had many many symptoms of lupus, and she wasn't meeting the criteria for rheumatic fever. Her rheumatologist has diagnosed her with connective tissue disease, which is acting very lupus like and may become a lupus diagnosis at some point. I am wondering, though, if she also had rheumatic fever. Her ASO titre was high and took a while to come down. She has been in one of these flares now for 8 months and is still very ill. She just started on Plaquenil this week. (BTW, I also have lupus like connective tissue disease, which I have had for the past 18 years.)
    Pam in MO

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    hi pam, welcome to our family....i am so sorry to hear that your daughter is dealing with "lupus-like symptoms". I hope the Plaquenil starts working for her and helps her to get out of this flare.
    Phyllis

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    Thank you for the nice welcome Phyllis. I am so worried about my daughter, so I appreciate your good wishes. She just seems to get sicker and sicker. Tonight she is in such pain. She's been running a low grade fever for the past few months and just feels terrible. Now she has a swollen node in her armpit, which happened during another flare 4 years ago. I am hoping the Plaquenil is going to help her!
    Thanks again.
    Pam

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    Welcome to the forum, Maine and Pam.

    ((((Hugs)))) to you both...and also your daughter, Pam.

    Migratory is an excellent way to put the disease. That hits the nail right on the head!

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