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  • ulcerative colitis and now sle too (not drug induced)

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    Old 12-30-2014, 05:35 PM   #1
    zoe305
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    ulcerative colitis and now sle too (not drug induced)

    Hi everyone. I'm new here and to forums in general. Just thought I'd put my tentacles out there to see if anyone else has uc and THEN developed lupus? Definitely not drug induced either. My rheumatologist made it sound like its quite common as they are both autoimmune diseases but looking through the Internet - it actually seems quite rare. Specifically because of the order I received them in (without medication as the cause). Anyone else had them appear in this order.

    if you like history and labs then feel free to read on:

    Colitis diagnosed 8 years ago and been on steady treatment of mezasalazine for at least 6 years. Went to gp a few months ago feeling tired and fed up with joint pain that moved to different joints in my body on almost a daily basis and got particularly painful especially overnight if i dared to challenge myself slightly in a gym workout. There was no flare in my ulcerative colitis so on the advise of a colleague who's mother has lupus, i got the gp to include lupus tests in my blood test together with arthritis related tests.

    My ana came back strong positive 1,280 homogenous. My rf was 11 (normal range at this lab is 11 or under). Ds dna positive 33 (normal range for this lab is 0-10). Also had low ferratin and alerts on iron, transferrin, mcv, mch, rdw as a result.

    Saw rheumatologist finally in December and he pretty much just asked what brought me there and looked at my blood test results concluding i had lupus based on the positive ds dna. Seeing the rheumotologist in a couple of weeks, seen the results of his tests through my gp and all look ok with only a couple of alerts for ds dna and globulin blood proteins (both typical for lupus) - No sign of damage anywhere yet through my urine and blood tests. My iron studies are almost normal since i started on ferrograd-c.

    Doesn't appear to be a particularly nasty case of lupus at this stage, either that or it's only just begun. Anyone who has any info on lupus developing after colitis then I'd love to hear from you :-)

     
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    Old 12-31-2014, 06:49 AM   #2
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    Re: ulcerative colitis and now sle too (not drug induced)

    Zoe, hi & welcome. I've read of rare cases where an anti-TNF (tumor necrosis factor) medication induces "classic SLE". (I say "classic" to distinguish it from "drug-induced lupus", which is characterized by anti-ss-DNA in the absence of anti-ds-DNA.) That said, I don't know if the particular anti-TNF med you take has ever been so implicated.

    And, yes, it's possible to "simply" develop both conditions, meaning not as a result of any med(s). One of my lupus hardcovers says that 1-4% of SLE patients also have UC.

    This is way beyond me, but I'd probably ask questions like this:
    1. Has my particular anti-TNF ever been known to induce systemic lupus?
    2. Do I meet 4 or more of the criteria used to diagnose/classify lupus? (You may find the 11 criteria in the "sticky posts" located above the user threads. You generally must meet 4 or more of the 11, not necessarily simultaneously, to create the dx.)
    3. Re anti-ds-DNA, how high is my level; and can anti-ds-DNA ever occur, in lower levels, in conditions other than lupus? (I believe that it can occur in other conditions in LOWER levels, but that HIGH values correlate to lupus.) As for what constitutes "high": one of my labs shows ranges for anti-ds-DNA: negative, equivocal, weak positive, positive, and strong positive. And from the mere fact that such ranges exist, I'm betting that level does matter...
    4. If this is lupus, can I continue to take the anti-TNF for UC, or are anti-TNF's contraindicated in lupus? If they are, what UC med would replace it?
    5. If this is lupus, how will it be treated? Also, will I have to avoid sun? (Most people with lupus must avoid it.)

    I hope others add more. Because this is probably a mighty tricky subject, I especially hope that your rheum, your gastro, and your GP are working in concert. Please let us know what you learn & how you're feeling. Wishing you good luck and clearer sailing in 2015! Warm wishes, Vee

     
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    Old 12-31-2014, 08:16 AM   #3
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    Re: ulcerative colitis and now sle too (not drug induced)

    Vee has given you some great info.
    To add to it,

    anti-TNF 's are known in a few studies for autoantibody production(i.e. its well documented in infliximab treatment). It can induce anti dsdna antibodies in patients when on anti tnf's, it can also induce ANA positivity as well. When the drug is discontinued the anti dsdna bodies can fall back into normal range. So it could potentially be drug induced anti dsdna antibodies and you may not have lupus. Obviously, only a good rheumatologist can figure out if you've developed secondary lupus, or if the drug is inducing it. The good news is the patients who develop dsdna antibodies during anti tnf treatment usually have mild symptoms and do not have CNS or renal involvement.

    dsdna antibodies can occur at low levels in a lot of autoimmune disorders rarely. Sjrogrens, RA, autoimmune hepatitis, etc. Ive seen no general consensus of what they cutoff as low for the other AI diseases - probably because its so rare or just unstudied, just that when its nearing end of range for whichever test that its definitely lupus.

     
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    Old 01-01-2015, 12:41 AM   #4
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    Re: ulcerative colitis and now sle too (not drug induced)

    Thank you both for your help and happy 2015!

    I barely scrape through on the minimum 4 criteria for diagnosis - Joints, strong positive ana, positive ds dna, fatigue and low iron were the main reasons for me being referred and then ultimately diagnosed with sle by the rheumatologist.

    I have been taking Mesalazine, also known as mesalamine or 5‑aminosalicylic acid for my ulcerative colitis for at least 6 years. It appears to be very rare for this medication to cause drug induced sle but not impossible so thank you for your advise, I will be asking the rheumatologist if its at all possible after having taken it as long as I have. He hasn't yet checked my anti-ssdna or antihistone levels so these tests may help (yes I've been researching) :-)

    I'd still love to hear from anyone who has diagnosed uc and lupus as well. Anyone with any words of wisdom / advise or questions are welcome too.

    welcome to the new year :-)

     
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    Old 01-08-2015, 08:45 PM   #5
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    Re: ulcerative colitis and now sle too (not drug induced)

    Hi all. Have been to the rheumatologist again. They are confident that i do have sle and that we have caught it in very early stages which is why it is so mild and will hopefully stay that way for the most part with monitoring and medication which is good news.

    I asked if there was any chance it was drug induced. The doctor said had already run tests to check and i do not test positive. My test results are

    He said that i will most likely get a rash at some point but organ involvement is quite unlikely with treatment having commenced in good time.

    Flare ups in my ulcerative colitis are likely to make my sle flare but overall mostly good news and prognosis.

    Thanks for your replies alicake and veej :-)

     
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    Old 01-09-2015, 06:07 AM   #6
    alicake
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    Re: ulcerative colitis and now sle too (not drug induced)

    Zoe,
    Sounds like your follow up went well. Sounds like he's confident you'll stay in the mild SLE category which is great.

    yeah, the UC could definitely flare the SLE, and vice versa. So careful monitoring & following your rheums medication plan is important.

     
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    Old 01-09-2015, 08:50 AM   #7
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    Re: ulcerative colitis and now sle too (not drug induced)

    I think the cramping and diarrhea after intercourse is a sign of the uc and rectal inflammation. There is a very thin wall between vagina and rectum. You mmoght try positions that slant the penis more forward where bladder is.

     
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    Old 01-09-2015, 03:29 PM   #8
    zoe305
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    Re: ulcerative colitis and now sle too (not drug induced)

    Thanks alicake and ladybug :-)

    I am happy that the rheumatologist is optimistic about my disease staying mild. He doesnt want to see me for another 2 months as by then the plaquenil should be working, just need to do the bloods and urine tests again a week before going in. As long as i don't develop a reaction to the plaquenil then I imagine i will be in top shape.

    I have been on plaquenil for a month now and so far so good. It was interesting to find out that just as it can take 3 months to work, it can also take that long to develop an allergic reaction. He also said that gasiness at night is something a lot of people complain about with it so I'm not alone there ;-)

    Re the pain etc after intercourse, I'm going to get a referral to a gynae in case of endometriosis. Tbis was the rheumatologists recommendation, i have also found mention of having tilted uterus as well - not sure that applies to me because no gynae has mentioned that but may as well see the doctor for the "region" so to speak. The pain is definitely coming from that area too, feels like the worst period pain along with sweats nausea and diaherrea. Thanks for the advise ladybug, i see my gastroenterologist in a few weeks so if i haven't got to the gynae first then I'll see what he thinks. That will be an awkward subject i do think!

    Thanks again for your advise :-)

    ps I'd still love to hear from any uc sufferers with lupus

    Last edited by Administrator; 01-11-2015 at 08:05 AM.

     
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