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  • Lupus Centromere pattern

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    Old 10-07-2014, 12:27 PM   #1
    StarStacey
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    Lupus

    Hi,
    I am 38 years old and have already had bilaterial hip replacements which were thought to be purely down to SCFE as a child. I have growing concerns as the replacements haven't sorted me. My ortho told me that he would need to refer me to rheumatologist just to rule out the possibility of something else causing my aches and pains. So, my GP did that and did some bloods. The rheumatology factor came back negative and that was that. I asked her to consider lupus and gave her a list of symptoms that come and go. So, she ordered ANA test. This came back 1:1280. I have been suffering extreme pain and exhaustion for the past ten years, after I had my first child. Of course, I thought this exhaustion was down to being a parent! Anyway, I don't know the pattern of the ANA. I asked for it and they said they didn't have it on the result page. My ESR is normal at 4. I have been referred to the rheumatologist. Appointment is 3rd November. It can't come soon enough.
    • Frequent sores on the roof of my mouth (for no reason), mouth ulcers (for no reason), irritated gums causing me to use a very soft tooth brush
    concerned about. I was worried it might be something sinister)
    • Frequent bouts of unsettled stomach with diarrhea which has been investigated with scope and nothing to be found
    • Dry skin rash on my neck which never goes away
    • Palpitations
    • Dry eyes which causes severe pain at times
    • Occasional chest pain when breathing deep which usually disappears after a few minutes
    • Joint pain and soft tissue pain
    • Frequent twitching of muscles in arms, fingers and legs
    • Increased hair loss
    • Extreme tiredness
    • Numb hands, feet especially when laying down.
    • Red rash across nose
    Ever since I can remember, I have had a skin disorder which they have diagnosed as Pityriasis Lichenoides Chronica through a biopsy. So, any time I had problems with my skin, I just thought it was this.

    I have been bothered for a long time. Nobody understands why I am in so much pain and so tired. I have little or no interest in anything. I struggle to work full time and have no energy to give to my husband and children. :-/ In a way, I kind of just want a diagnosis so that I have an answer to my pain, so that I can get the right help.

    I guess what I'm asking is if there is anybody medical out there who can tell me if I'm on the right wave length, I'd be very grateful.

    Stacey

    Last edited by StarStacey; 10-07-2014 at 01:17 PM.

     
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    Old 10-07-2014, 01:21 PM   #2
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    Re: Lupus

    Stacey, with your list of symptoms and your ANA result, I think you are on the right track and will get help soon. I would call the rheum office and see if they can move your appointment up or call you if a cancellation occurs. The pattern of ANA is not so important as the titer (the level of how positive it is.) 1:1280 is significantly high, and your rheum will most likely want to do some additional tests for anti-Smith antibody and anti-dsDNA, two other antibodies seen in lupus. You can also check out the "sticky posts" at the top of the lupus board here, and review the common symptoms and signs often used for diagnosis. There are many, but generally 4 or more of these 11 suffice for a diagnosis. It is a shame you have been ill for so long, and I am glad you asked to be checked for lupus. If you do get diagnosed with it, you should feel quite a bit better once on treatment, although that takes some time. But at least you will understand, and so will your family, why you feel the way you do. We are here to help, so keep in touch with any questions or progress reports.

     
    Old 10-07-2014, 03:13 PM   #3
    StarStacey
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    Re: Lupus

    Thank you, Ladybud! I called the rheumatologist today and no cancellations. I am in the UK, so waiting list applies. I guess being seen in less than a month isn't so bad, but when I just want answers, it is very frustrating. I will keep trying. Thank you for your words of encouragement. I have reviewed the list of 11 things they look for to diagnose lupus. I definitely have some, but not all the time. I am worried that the higher the ANA the more likely that tissue damage is going on. I know that my liver function was slightly out of the normal range. Who knows? This could explain a lot. I will keep you posted. Thank you to everyone who reads and replies. I promise to come back here and update. Cheers!

     
    Old 10-08-2014, 04:19 AM   #4
    alicake
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    Re: Lupus

    while a high ANA is significant because an extremely low amount of the healthy population has a very high ANA, it does not correlate to disease activity. Meaning, you can have an incredibly high ANA and more mild symptoms - many people do.

    Usually they follow antibodies to dsdna and complement levels for things like nephritis and bad flares, and even then it isnt a sure thing.

    The rheum needs to know about the liver functions, some things overlap, and there are autoimmunes that attack the liver, or it could be for another reason entirely. However, it needs to be known by the rheum so he can investigate.

    Last edited by alicake; 10-08-2014 at 04:22 AM.

     
    Old 10-10-2014, 09:10 AM   #5
    StarStacey
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    Wink Re: Lupus

    Thank you for your words of wisdom! I will bring my list of health 'issues' to discuss with the rheumatologist. I imagine I will be none the wiser after my first appointment, but perhaps at my second, maybe? Fingers crossed! Thanks to everyone!

     
    Old 10-24-2014, 03:33 PM   #6
    StarStacey
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    Re: Lupus

    Hi, I have been having further problems. I am having speech difficulties, at time stuttering, poor concentration and at time, feel like my hand is shaking.

    While I was on the phone I asked her if she knew what my pattern was. She said that she wasn't so concerned that my titer was 1:1280 - she thought it was on the low side, which surprised me as everything I read is the opposite. She read that it was Centromere pattern, which I am confused about. Is this the same as peripheral pattern? when I look at what centromere is it is more linked to CREST and Scleroderma. And a reputable website says peripheral is almost exclusively Lupus (SLE). They talk about an anticentromere test, but nothing to do with Centromere. Help please. I am confused. I don't seem to have any of the symptoms of CREST or Scleroderma! Please help me. Thanks!

     
    Old 10-24-2014, 06:28 PM   #7
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    Re: Lupus

    Star Stacey, The rheum not being concerned about your ANA titer is concerning to me. This is NOT a low titer, it is high, and undoubtedly means something. You can have ordinary lupus with a centromere pattern, so I would be less concerned about that pattern than the titer level. You generally need 4 or more symptoms out of the 11, and they need not be present all the time. Some may have happened only once, and they may certainly be intermittent, as is the nature of the disease.

     
    Old 10-25-2014, 01:24 AM   #8
    StarStacey
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    Re: Lupus

    What is "ordinary" lupus please? And thank you for your answer :-) Thanks again.

    Last edited by moderator2; 10-25-2014 at 05:16 AM.

     
    Old 10-25-2014, 01:28 AM   #9
    StarStacey
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    Lupus Centromere pattern

    I spoke to my General Practitioner today by phone and I asked her if she knew what my pattern was. She said that she wasn't so concerned that my titer was 1:1280 - she thought it was on the low side, which surprised me as everything I read is the opposite. She read that it was Centromere pattern, which I am confused about. Is this the same as peripheral pattern? A website that I look at has peripheral in brackets to describe centromere. I also read that centromere is it is more linked to CREST and Scleroderma. But a reputable website says peripheral is almost exclusively Lupus (SLE). They talk about an anticentromere test, but nothing to do with Centromere. Help please. I am confused. I don't seem to have any of the symptoms of CREST or Scleroderma! Recently I've started to stutter. Please help me. Thanks!

    Last edited by moderator2; 10-25-2014 at 05:16 AM.

     
    Old 10-25-2014, 06:13 AM   #10
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    Re: Lupus Centromere pattern

    Your GP has it backwards... titers of 1:40 and below are negative, and then as it goes up 1:80, 1:160, doubling each time. Each doubling represents a dilution of the blood, the actual end titer is the last visible stage of the ANA by the lab tech.

    A low titer is not very significant because something like %40 of the healthy population has ANA of 1:40... However, above somewhere in 1:160 it drops to %5 or %2 etc. Your titer is pretty high but not like insane - my mom used to work in the major new england autoimmune lab where their control was 1:10080, but I'd bet that now 40 years later theres probably someone with a higher titer.

    Patterns have some specificity, but its not set in stone. Centrenome pattern is seen in CREST usually, however... A person can have multiple ANA patterns and a different titer for each one, some labs only titer out the one with the highest titer. Then also, any one with an autoimmune can have either overlap symptoms or develop multiple auto immunes. Basically, the higher the titer, the higher the specificity.

    Titer level doesnt indicate disease activity, it just means AI disease is more likely.

    The sores on the roof of your mouth are potentially a big clue, its hard to take pictures of the inside of the mouth, but if you can - get pictures while you have them to show doctor/rheum. also, pictures of any joint swelling, and pictures of dry skin. Do you get tight/dry skin on your fingers too?

    I think what she meant by ordinary lupus, is systemic. There are a ton of subtypes of lupus, with different rashes. A lot of rheums focus on the rashes when diagnosing I've found, but some people dont get rashes at ALL (especially if anti-RO is negative).

     
    Old 10-25-2014, 06:24 AM   #11
    StarStacey
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    Re: Lupus Centromere pattern

    Thank you for your reply. I don't have what I would class as dry skin on hands, unless using cleaning agents, but I suspect that is fairly normal. The dry skin on my neck is always there, so no prob to show to rheum. I never thought I had the malar rash until recently, but I'm unsure. I've got a photo without makeup I could show someone. It might not be! It's just that everything else points to lupus and not much to crest. Still I feel at least I might be getting closer to knowing why I am so so tired and continue having pain. Many thx to everyone here for support. X

    Last edited by StarStacey; 10-25-2014 at 07:11 AM. Reason: typos

     
    Old 10-25-2014, 06:33 AM   #12
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    Re: Lupus Centromere pattern

    *HUG*

    Yeah, I get the malar rash too, but it is so light usually for me.

    Your symptoms do sound more like lupus to me too, but again, overlaps and crossovers happen. My antibodies and symptoms also seem more lupus like but I have a lot of overlaps confusing everything, like possible liver involvement, and esophagus spasms/trouble swallowing (seen with crest), and then vasculitis. It's left us both very confused.

    Thats why AI diagnosing for most people can be become a confusing hodge-podge.
    Its better to be in the mindset of not worrying so much about the diagnosis, but more about having a caring rheumatologist who will treat even if he/she is unwilling to diagnose.

    I also get the dry eyes and dry mouth(but am negative for sjrogens antibodies). Are you seeing an eye doctor? Dry eyes are common in any AI and not exclusive to sjrogens. Its important to see an eye doctor for it as they can treat that separately before you might get systemic treatment and abate any damage to your eyes. I take lotemax & restasis drops, and while my eyes arent %100 yet I have seen a marked improvement, as has my eye doctor. I also carry around tons of mini packs of preservative free eye drops. Helps a lot.

     
    Old 10-25-2014, 06:53 AM   #13
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    Re: Lupus Centromere pattern

    Thx again! You're right. All my concern and worry about patterns is not good for me. Just getting a rheumatologist who can help is what I should concentrate on. Question: do you find your esophageal prob result in speech diff? X

    Last edited by StarStacey; 10-25-2014 at 07:10 AM. Reason: typos

     
    Old 10-25-2014, 07:02 AM   #14
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    Re: Lupus Centromere pattern

    no, but I have noticed a speech change with the dry mouth, especially late in the day.

     
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    Old 10-26-2014, 04:21 AM   #15
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    Re: Lupus Centromere pattern

    StarStacey, I'm sorry you're having all these issues, they truly stink! I'm with the others, and I'm very glad you're soon having a FULL rheumatology workup. By full, I hope it includes rheumatoid arthritis because I don't think Rheumatoid Factor is a "must" in RA. Also Sjogrens syndrome, given your dry eyes. (Sjogrens can occur standalone or be secondary to another AI.) Also, given your history of "SCFE", one would want the possibility of avascular necrosis explored---meaning I hope imaging tests are done, to help narrow the diagnostic possibilities.

    Were thyroid labs run? Thyroid disorders can occur standalone or co-exist with another autoimmune, and can cause all manner of symptoms, including hair loss, fatigue, joint pain, shakiness, etc. My sis is hypothyroid & has very dry & red neck skin---not a rash (or if it is a rash, it's one I don't know about).

    Twitching, etc. Certain vitamin deficiencies commonly accompany AI's and can also contribute to neuro-like symptoms. (I had twitching & was found to have low Vitamin D, B-12 and Folate. My tingling was so bad at times that I suspected MS, but it turned out to be lupus.) Deficiencies can require separate treatment, btw. Also, lupus itself can cause strange autonomic nervous system disruptions, affecting breathing, heart rate, etc.

    Re your other longstanding skin problem, Pityriasis Lichenoides Chronica. I know you said you had it biopsied, but I learned the hard way that skin biopsies can be far from definitive, so I'd want it discussed, too. I believe other things can cause red or black dot-like lesions, such as vasculitis, platelet disorders, etc. (list not exhaustive.) There's a separate "sticky post" on some skin disorders common in lupus, btw. Also, JUST CURIOUS: do these things itch or burn? Where do they appear? How long do they last?

    Re GI misery. I had episodes for 20+ years, yet nothing GI-specific (ulcerative colitis, Crohns', Celiac) was ever found on invasive tests. My problem was so bad that my other ongoing issues often paled in comparison. Weirdly, my GI problem virtually disappeared after starting Plaquenil & sun avoidance.

    My rheum's staff asked me to prepare a FULL LIFETIME medical history, in my own words. It can't hurt to prepare one to take along. (Actually, you could just add more to the bulleted list from your first post, e.g., the labs your GP recently did.) Here's hoping that your appointment goes blazingly well & that you get the help you need soon. Looking forward to updates and wishing you better days ahead! Sincerely, Vee

     
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