39 Responses to Please leave a comment, question or suggestion here.

  1. Who has reviewed this website for medical accuracy ? Do you have doctors on staff helping with this information?

  2. The Scleroderma FAQ a has been reviewed by a number of medical experts, including one scleroderma expert, and no errors of content have been found except for drug side effects on one drug early in the review process. Regardless, as I am not a physician, specifically not a rheumatologist, no major scleroderma organization can legally endorse the website, even if they decide to recommend it as a resource for patients at some point the future. The International Scleroderma Network (sclero.org) includes a link in the resource section but that does not constitute a formal endorsement. I am personally aware of two rheumatologists that have reviewed the information on the website and have told me that are now planning on recommending the site to their patients.

    Eventually I am planning on hooking up with a rheumatologist to eliminate the endorsement problem, but until then I suggest that you compare the information on this website to other major excellent websites, e.g., the Scleroderma Foundation, Johns Hopkins, and the Mayo Clinic. You will quickly be able to verify that where the websites cover similar material, all of the websites are similar. What other websites are often lacking is complete information on the many antibodies now associated with scleroderma (Table 3 in the FAQ), or a detailed explanation of the how the new 2013 ACR/EULAR Classification Criteria should be used clinically. Another example is the detailed information on the website explainig how and why modern ANA and antobody testing methodology can result in false negative resuls that can delay diagnoses for years in some patients. This topic is covered in the Diagnosis section of the Guide for New and Future Patients, but also is discussed in much more detail in a Technical Article (including research citations) that can be found in the Additional Articles section of the website.

    I hope this answers your very important question.

  3. Ed where have you gone.. See you are inactive.. want to talk re: Your information to Doc.. please contact me.

  4. I’d like more information on how to incorporate all these meds into our lives. What can we take together. What should be separated. What liquid s can we use to get them down, which liquids should we avoid.
    Sometimes there are just not enough hours in the day to get them all down….help!!!!!

    • Judy – that is a great suggestion which I will add to my “todo” list to investigate for the next major update of the website next year. I would suggest that this is a great topic to ask other patients in the meantime if you are a member of a forum such as the Facebook Scleroderma Angels group.

      • for a long time I don’t believe fibro to be atinummuoe and often get a negative reaction. Your explanation makes it much clearer and hopefully easier for folks to understand! Thank you!Aimee

  5. Hi Ed. I am in the beginning stages of being diagnosed with scleroderma. After reading about blood testing methods I decided to call the lab and ask which type they used for my scl-70 test. I was told they used the multiplex flow immuno assay style. How can I convince my rheumatologist to request the better, more effective style for my next blood test?

    Thank you!

    • Melissa – this is a great question. I actually address this a bit in the Guide for New and Future Patients.

      Basically, there is nothing at all wrong with ELISA and Bead Multiplex testing for ANA and antibodies. Research has shown that they are very accurate and reliable testing methods. They do a great job of detecting any antibody that they are set up to detect. However, depending on the specifics lab and method, either of these tests will detect somewhere between 8 and 13 antibodies. In contrast, testing by indirect Immunofluorescence (IFA) will detect between 100 and 150 antibodies, depending on substrate.

      So, IF you have one of the antibodies that the ELISA or Multiplex array is set up to detect, it will do a great job of detecting it. If instead you have an antibody that is not in the testing profile, then it will not detect it and you will get a false negative ANA result.

      Now to your specific case: the Scl-70 antibody (sometimes called (inappropriately) the “scleroderma antibody” in some lab testing catalogs) is almost always one of the antibodies included in general autoimmune screen panels and certainly in all scleroderma panels, even in labs which only test for a couple of the scleroderma antibodies). What that means is that you were almost certainly tested correctly and the Scl-70 antibody result is likely to be accurate. If it is a very weak positive result then it may not be clinically significant since some people will test for this antibody at a low level and never develop any symptoms. If, however, it is definitely a positive result, it would suggest that you are or may be in the future dealing with diffuse scleroderma, which is highly correlated with the Scl-70 antibody.

      Sorry for the long winded answer but I wanted to make sure that people understand both the strengths and the weaknesses of ELISA and Multiplex testing methods.

  6. Thank you very much, Ed! I am so frustrated with my PCP and the rheumy he sent me to. I don’t present with Reynaud’s so at the very first visit the rheumy wrote me off even though I have a high positive Scl-70 result. I also tested high positive for ANA and anti-histone. My PCP sent me back to the rheumy who finally decided something is going on and ordered more blood tests. I see the rheumy again next month. The lab is going to mail me the latest blood test results so I can view them before I see the rheumy. I hadn’t known I could get my own copies until a few days ago when I called the lab to ask what method they used. I have been to a gastroenterologist who ran an upper endoscopy. She found an ulcer, mild gastritis, a hiatal hernia, and GERD. I DON’T want to have any form of scleroderma, but I want some type of answer to what is ailing me. Thanks again Ed!!!

  7. Thanks Ed for a great site! Your dedication is appreciated. Your site provided useful information that is often hard to completely understand and internalize when searching on medical sites etc. I have learnt something new from your site. Thanks

    • Judith – Glad to hear you found it helpful. I suggest you sign up to be notified of new posts if you haven’t already done so. I have a new 3-part series coming out soon titled “Understanding Medical Research” that you may find helpful in understanding how much weight to give various kinds of research studies.

  8. Ed, I have a question. Once a person has a positive SCL-70 does it ever change? Can the test read negative at a later time? Twice this year I have tested positive on the SCL-70 test. 0.0-0.9 is negative according the lab. Both times I tested at 1.7. Does anyone ever test positive and have the numbers go higher?
    Thanks!

    • Ignoring the fact that different labs use different testing methods so the numbers can look very different, assuming you run the same test at the same lab over time, once the result has gone positive, it usually doesn’t change much. Also, the actual number is not correlated with disease severity in scleroderma. In other autoimmune disorders, the value seems to be much more of an indicator of disease activity.

      The only time a have ever seen an exception to this was a letter to the editor in a research journal about 25 years ago where researchers were following a large group of scleroderma patients and monitoring their ANA levels over time. In most cases, they did not change much at all. However, in three cases, they reported that there was a sudden dramatic increase in ANA level that was almost immediately followed by a noticeable increase in symptoms. I have never seen any other mention of this and so the general recommendation is that once a positive ANA and antibody has been determined, there is not really much reason for repeat testing over time.

      I have also not seen any credible research indicating that ANA or antibody levels go from positive to negative, other than testing errors, which are actually fairly common with ANA testing in scleroderma patients due to changes in testing methodology. See the post on ANA and Antibody Testing in the News and Announcements section of the website for more information on this issue.

  9. Thank you Ed and company for the work you continue to do! I am truly grateful you are so dedicated to our disease. May all the good you do be returned to you a thousand times! Blessings!

  10. What a great site! You have dedicated yourself to this informative site and I am truly grateful.

  11. Good morning Ed;
    I have not looked at this site in many moons,it is looking better and better.How are you doing these days and is there any chance the SD foundation may welcome you back and apologize for their bad behavior?So many people still miss you.
    I don’t know if I told you that My computer died and it was caused by my backup system.No idea of why or how??????????I lost all the info I had accumulated over the years but know where to find most of it,I think.I looked high and low for Susan’s rebutle to Dr. Maye’s AP trial and can’t find it even when using the “search” function on Inspire.When and if you have time could you send it to me if you still have it.
    Thanks,Lynne

  12. Lynne,

    I am doing well. I responded to you in a separate email and sent you Susan’s paper on the AP paper.

    Ed

    • Hi Ed;
      I never received it.Maybe hubby deleted it by accident.Can you resend when you have time.
      XXX to the family

      • Lynne,

        I just sent it directly to your citenet email address. Let me know if you get it this time.

        Ed

  13. In your section: Changes in ANA and Antibody Levels in Scleroderma, you say that the antibody testing is very accurate. My question is, I tested positive ANA 1:160, with anticentromere pattern 1:160, then on a separate antibody test measured in EUs, my values on the anticentromere antibody was within normal range. I contacted both labs, one said the pattern is more accurate and verified I did have the pattern. The other lab said the antibody level is more accurate as the pattern can be subjective. Do you have any help for me on deciding which is correct.

    (I am new to Inspire but read your old posts. Not sure what happened, but now that I have found this site, I will definitely keep up to date!)

    • The pattern is less accurate than the separate antibody test. Reading ANA patterns is a bit of an art form and can be subjective. That is why in my paper titled “How to Do Scleroderma ANA and Antibody Testing Correctly”, we recommend always confirming a centromere pattern with a separate anticentromere antibody test.

  14. I have never tested positive for scleroderma but was diagnosed originally by a Rhuematologist whom was a professor in rheumatology at Vanderbilt based upon my other labs & my symptoms as well as PFT’s ect… I since have been traveling to Duke as my Rhuematologist passed away that diagnosed me & have had progression internally that definitely clarified her diagnosis. How often does it happen that the SCL-70 is negative but a person still has the disease?

  15. I am confused and worried. I went to my PCP for a physical and my blood work came back positive ANA anticentimere consistent with CREST. I have raynaud a, psoriasis and Hashimoto. He sent me to the expert research docs in Boston Brigham and Wowmen’s hospital who stated I do not have scleroderma and is very sure it is the raynaud phenomenon and I have a low chance of getting scleroderma. I still cannot get it out of my head and fear it daily. Any info on this would be a great help

  16. If you have positive anticentromere antibodies, this would be consistent with a diagnosis of limited systemic scleroderma (old name CREST). However, you would need a few additional symptoms to qualify for a formal diagnosis of limited scleroderma. Raynaud’s would definitely be a related symptom. Hashimoto’s is very common as a separate additional autoimmune condition, but is not part of scleroderma. In order to receive a formal diagnosis you would need additional symptoms. If you look at the Diagnosis section of the Scleroderma FAQ, there is a discussion of the new 2013 point system and how to use it. You may be able to tell from that if you would meet clear diagnostic criteria for a scleroderma diagnosis.

    For example, if you have swollen fingers in the morning, little red dots at the base of some of your fingernails, heartburn, difficulty swallowing, etc., then you would certainly receive a diagnosis of limited scleroderma from a scleroderma expert. Some untrained rheumatologists and other docs naively think you have to have skin changes for a scleroderma diagnosis, but with limited scleroderma in particular, skin changes may not show up for many years.

  17. Congratulations Ed! I saw the recent article on Scleroderma News. So excited for you. 501c9 is wonderful. You are now receiving national attention. Visibility and credentials are so important to your work on viscosity to be researched as soon as possible. On behalf of myself and others I have great gratitude for the years of perseverance and work that you have for all of us with scleroderma. Thank you….Brene

  18. I’d like to be referred to a Scleroderma/CREST specialist. I am in Louisville. KY. I was diagnosed at the Cleveland Clinic last year.

    • I would suggest you go to the Scleroderma Foundation website (scleroderma.org). They have a section that lists scleroderma clinics around the country.

  19. I just found this site ,I too have this disease, I call it a curse,writings to follow

  20. Hi Ed,
    I’ve learned so much through your excellent articles and replies to questions. I’ve been wondering about three things:

    1) Are there any studies showing a high correlation between a negative ANA result and normal nail fold capillaroscopy?

    2) If an ANA IFA result of < 1:80 is considered negative at one lab, and a result of 1:40 is considered low positive at a different lab, can one trust the <1:80 negative result?

    3) Is there any compelling reason to repeat negative tests run by both IFA and ELISA?

    Thank you so much for your obvious hard work and thoughtfully explained research.

  21. Dear Ed, I have just learned about you and am so greatful to have you to turn to for advice. I hope that this is the right section for asking questions. I found out last week that I have diffuse scleroderma and that my skin score is 52. I have no skin problems or tightness whatsoever. What could this score mean to me?
    I have known about the Scleroderma for five years, but this is the first time they have given me information about it and decided to refer me to a Rheumatologist.

  22. I am so sorry that I asked a medical question on this space here yesterday. I was unaware. May I ask how TO ask Ed Harris a medical question about Scleroderma or if that is possible?