It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Autoimmune Disorders Message Board

  • Is this Scleroderma?

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 12-06-2017, 07:24 PM   #1
    daniell77
    Member
    (female)
     
    Join Date: Jun 2016
    Posts: 59
    daniell77 HB User
    Is this Scleroderma?

    Can someone explain the Centromere B antibody to me? My daughter's ANA is 1:160 Speckled and 1:1280 Centromere. She tested HIGH for Centromere B at 5.8 AI with normal range being 0.0-0.9 AI. This is the first time she has ever been tested for the Centromere B. Also, this is the first time she has tested for Speckled. It's always Homogenous and Anti-Centromere. She's been on Plaquenil for over a year now. Rheumatologist has been trying to get ANA to go negative according to the nurse I spoke to there. It was going down but has now gone back up in Centromere and she has Speckled now instead of Homogenous. How is this? Could this be Scleroderma? And could this have caused her renal artery stenosis? The arteries in her right kidney were in really bad shape. They had to be repaired, unable to stent or balloon. Also, could this cause breathing problems? We have an appt with a pulmonologist this month because despite being very fit and athletic, she's become short of breath just going upstairs in our home. She's using an inhaler twice a day. Thanks for any info.

    Last edited by daniell77; 12-06-2017 at 07:30 PM.

     
    Reply With Quote
    Sponsors Lightbulb
       
    Old 12-07-2017, 10:25 AM   #2
    luca689
    Senior Veteran
    (female)
     
    luca689's Avatar
     
    Join Date: Oct 2004
    Posts: 508
    luca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB User
    Re: Is this Scleroderma?

    Centromere B is strongly suggestive of SSc limited with other symptoms. but can appear in other diseases. Does your daughter have Raynaud's? And should your daughter, in fact, have Limited Ssc, find a rheumatologist familiar with it. ANA does not typically fluctuate in SSc, and does not correlate with disease severity nor activity. I know that steroids can bring on scleroderma renal crisis but I don't know much about renal involvement other than that. I do know that virtually everyone with SSc has Raynauds.

     
    Reply With Quote
    Old 12-07-2017, 10:44 AM   #3
    daniell77
    Member
    (female)
     
    Join Date: Jun 2016
    Posts: 59
    daniell77 HB User
    Re: Is this Scleroderma?

    Thanks for your reply. My daughter doesn't have Raynauds. We found her with sudden high blood pressure when she was about 7 years old. We saw a few kidney doctors before they found the renal artery stenosis. Her arteries were in bad shape, making surgery difficult. She's never had steroids. The issues she has is a high ANA (1:5120 the first time checked), joint pain (which is what started us looking into what was going on), hair loss, headaches, etc. She is also HLA-B27+ along with a very rare gene mutation of NLRP3 suggestive of a rare autoinflammatory disease called Muckle-Wells syndrome which may be the cause for her full body rashes and low grade fevers. But scleroderma, lupus, etc are autoimmune, not autoinflammatory. She has such a high ANA and an autoinflammatory gene mutation. I'm just concerned that this Centromere B is suggestive of limited and she has kidney issues that could possibly be caused by Scleroderma but from what I understand, limited doesn't cause kidney issues. Can CREST cause breathing issues because she's having that now as well. Seeing a pulmonologist at the end of this month.

    Last edited by daniell77; 12-07-2017 at 11:23 AM.

     
    Reply With Quote
    Old 12-07-2017, 11:24 AM   #4
    luca689
    Senior Veteran
    (female)
     
    luca689's Avatar
     
    Join Date: Oct 2004
    Posts: 508
    luca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB User
    Re: Is this Scleroderma?

    No Raynaud's is virtually unheard of in systemic scleroderma. Systemic scleroderma can cause lung issues, such as PAH or Interstitial Lung Disease but I am just not familiar with those issues. I might seek a consultation with a scleroderma specialist to rule it in or out or even overlap for your daughter, if possible. It's just that anticentromere B, while usually associated with CREST, can appear in other conditions, and scleroderma itself has such an individual course so that while there are some generalizations, each person has their own unique course of the disease. But not having Raynaud's might be an indicator to a scleroderma specialist of what is going on. A pulmonologist will also hopefully shed some light on this for you and your daughter.

     
    Reply With Quote
    Old 12-07-2017, 11:31 AM   #5
    daniell77
    Member
    (female)
     
    Join Date: Jun 2016
    Posts: 59
    daniell77 HB User
    Re: Is this Scleroderma?

    Thanks again. I say she doesn't have Raynauds but she could have it and I just don't know everything that goes along with it. Her fingers don't turn colors but her finger tips do become numb...just the tips of her fingers. If she rubs them together, she can feel them but they are tingly-like. I don't know if that characterizes as Raynauds since they don't change colors. Her Centeromere B was really high too. It was 5.8 AI with a normal range being 0.0-0.9 AI. My daughter seems to be very confusing.

     
    Reply With Quote
    Old 12-07-2017, 12:28 PM   #6
    luca689
    Senior Veteran
    (female)
     
    luca689's Avatar
     
    Join Date: Oct 2004
    Posts: 508
    luca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB User
    Re: Is this Scleroderma?

    Raynauds doesn't have to change all 3 colours of white, blue and red and can be a change of 2. But it does involve blood flow and that is what the hallmark colour changes are. Some people experience numbness and tingling, some don't but the colour change denoting constriction of capillaries is the hallmark of Raynauds. In autoimmune conditions as opposed to primary Raynaud's it is also bilateral. you will get the change in both hands or both feet. The change happens with a variation in temperature, coldness, or sometimes even emotional stress. With Systemic scleroderma, the antibody titre doesn't correspond to disease activity nor severity but it does in other diseases. That's why I think a specialist might be the ticket if your daughter's pulmonologist can't shed any light on this for you.

     
    Reply With Quote
    Old 12-07-2017, 12:38 PM   #7
    daniell77
    Member
    (female)
     
    Join Date: Jun 2016
    Posts: 59
    daniell77 HB User
    Re: Is this Scleroderma?

    No she doesn't have any color changes at all that I've noticed so I'm pretty sure there's no Raynauds. We haven't seen her Rheumatologist since this new blood work but he's always suggested Lupus. Is it possible to have this centromere thing with Lupus??

     
    Reply With Quote
    Old 12-07-2017, 12:48 PM   #8
    luca689
    Senior Veteran
    (female)
     
    luca689's Avatar
     
    Join Date: Oct 2004
    Posts: 508
    luca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB User
    Re: Is this Scleroderma?

    yes, it can, as well as rheumatoid arthritis, PBC, Sjogren's and others. It just primarily is indicative of limited Ssc but not conclusively and exclusively. So yes, lupus is certainly not excluded by anti cen B

     
    Reply With Quote
    Old 12-07-2017, 12:51 PM   #9
    daniell77
    Member
    (female)
     
    Join Date: Jun 2016
    Posts: 59
    daniell77 HB User
    Re: Is this Scleroderma?

    Thank you so much for answering all my questions! All of this is so confusing.

     
    Reply With Quote
    Old 12-07-2017, 01:06 PM   #10
    luca689
    Senior Veteran
    (female)
     
    luca689's Avatar
     
    Join Date: Oct 2004
    Posts: 508
    luca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB Userluca689 HB User
    Re: Is this Scleroderma?

    yes, I am afraid it is and I think it's worse when our child is the one involved. But there are so many more treatments now than there were in the past, once you sort all this out.

     
    Reply With Quote
    Reply Reply




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 04:21 AM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!