Do you have a comment, question, or suggestion for improving this website? Please note that personal medical questions should not be posted here. Cancel reply Comment 55 Comments Ed Harris February 23, 2019 at 10:43 pm I am not sure what the coverage situation is in Canada. I would start by trying to get your doctor to read the review and learn about this so you can discuss it. LIse Millard February 23, 2019 at 10:39 pm I am very interested in any information I can get. I am from Ontario Canada and have been diagnosed 14 months ago, but symptoms for about 5 years. Also have Sjogren’s and Raynauds. Ed Harris September 11, 2018 at 12:36 am Could you clarify your question? What are you referring to? Marilyn Gigliuto September 11, 2018 at 12:14 am Does this have any effect on neuropathy or just Reynaud? iris cutforth August 31, 2018 at 8:44 pm Shingles…you either have them or you don’t. If one has never had shingles…why would they inject themselves with shingles? Diabetics are more prone to shingles. I wanted to work in a lab when I was younger…so back in the 1960’s, I studied different diseases. One problem was shingles. Shingles has a high concentration of sugar. So…if one was to get chicken pox and other poxes, hives and whatnot…is there a high concentration of sugar present? Does the germ, virus, mite, microscopic whatever block the pores and the sugar acts as a volcano? I did some experimenting seeing that I had fever blisters. Pure vanilla, dabbed on top of a fever blister, causes the blisters to stop forming and if one is very enthusiastic at applying the vanilla every second for hours…the blisters flatten completely down. What is in vanilla that reacts with what is going on? I do break out in shingles and I am low diabetic but it shoots up if I have a donut to 14 so I watch what I eat and don’t eat sugar everyday. Pre shingle breakout, I have the rotating sharp pain circling around the ear. Right ear pain that bends my head to the knees but the break out is left shoulder. I keep meds on hand for shingles, about 4 -6 and go to the hospital right away. I give myself a shot of vanilla under the shingles. So far…they go away. I can’t imagine anyone deliberately taking a shingles vaccination. I was told three years ago, after a cancer operation, that I have about 5 years to live. I am still working. Didn’t do the cancer treatments due to scleroderma. I do think of all your patients from time to time. God Bless! Ed Harris June 9, 2018 at 1:21 pm I have not been following the leaky gut and gut biome research, but it looks interesting. My research focus is on interrupting the disease process early enough that the GI problems never arise. As a side note, I had severe GERD myself with centromere positive limited systemic sclerosis, but that completely resolved after two years of regular pulsed plasma exchange. This suggests that many GI tract issues may be reversible if you interrupt the disease process. Roberta Hines June 8, 2018 at 9:26 pm Ed- your site is great, packed with a lot of good information. One thing that is missing and since I have this problem are discussions of the digestive track. I have the greatest issues with this system and was first diagnosed with scleroderma by a gastro guy in my late 40’s. (I developed raynauds in my 20’s and was seen by Dr. Rodnan at the University of Pittsburgh, who then indicated that I had no other issues then but an elevated ANA). Digestive issues have lead to a decrease in lung function due to aspiration, according to my pulmonary specialist. I know the managing of the digestive issues involves a lot of controversy, but I think it should be highlighted. (SIBO, diet, etc) There is some work at UCLA and in Norway, for example that indicates that gut microbes are different in the scleroderma patient. Issues also with swallowing, gastroparisis, etc. Ed Harris June 3, 2018 at 12:08 pm We can’t comment on individual treatment decisions, but Cellcept is commonly used as a treatment approach with limited systemic scleroderma (modern name for CREDT). Lucy Elsberry June 3, 2018 at 3:33 am My doctor started me on cellcept, is this the right med to be in. I was diagnosis with crest syndrome. Ed Harris May 17, 2018 at 3:34 am We recommend that you contact the Scleroderma Foundation or go to their website at Scleroderma.org. They maintain a list of scleroderma treatment centers by State. Tabitha V Schultz May 17, 2018 at 3:26 am I am interested in finding the closest doctor to treat me for this. I live in TN at 37803 for zip code. Can you pls point me in the right direction? Tabitha Ed Harris April 24, 2018 at 11:27 pm If you are talking about ANA and antibody testing, we can help with those labs. Are you looking for help interpreting results or just in general? Gina Cook April 24, 2018 at 8:15 pm Who can I talk to about getting more info on labs? parapluies personnalisés April 2, 2018 at 9:11 pm Hurrah! At last I got a webpage from where I be capable of truly get useful facts concerning my study and knowledge. Kelly April 2, 2018 at 6:23 pm Thank u for this. -Kelly Knecht. Eugenia March 19, 2018 at 3:46 pm This is a lot of great information. Ed October 4, 2016 at 6:33 pm Anyone can email me directly at email@example.com. Ed Mary E. McDowell October 4, 2016 at 3:18 pm 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? Ed October 4, 2016 at 9:14 am Your comment that you don’t have skin problems or tightening but have a skin score of 52 is contradictory. That is actually a high skin score. Here is a link to a document that includes a discussion of how the Rodnan skin score is calculated: http://www.bloodjournal.org/content/bloodjournal/suppl/2009/08/12/blood-2009-02-204156.DC1/Document1.pdf?sso-checked=true. Do you know your antibody type? It is probably either Scl-70 or RNA Polymerase III. Mary E. McDowell October 3, 2016 at 7:11 pm 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. ElizaB August 23, 2016 at 4:39 pm 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. Ed August 21, 2016 at 9:47 am It seems to be working OK. Perhaps my website was down for a time. Please try again and contact me directly at firstname.lastname@example.org if you still can’t access it. Janice Hammerling August 21, 2016 at 7:16 am I cannot access Scleroderma Antibodies page of FAQ. jay samanowitz May 10, 2016 at 4:15 am I just found this site ,I too have this disease, I call it a curse,writings to follow Ed April 8, 2016 at 7:22 pm I would suggest you go to the Scleroderma Foundation website (scleroderma.org). They have a section that lists scleroderma clinics around the country. Linda April 8, 2016 at 6:07 pm 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. Brene April 1, 2016 at 1:44 pm 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 Ed Harris December 7, 2015 at 11:39 am 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. Cookie321 December 7, 2015 at 8:37 am 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 Tina Gibson September 5, 2015 at 7:00 pm 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? Ed Harris August 17, 2015 at 2:09 pm 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. Laura August 17, 2015 at 1:57 pm 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!) Ed June 21, 2015 at 1:52 pm Lynne, I just sent it directly to your citenet email address. Let me know if you get it this time. Ed Lynne Guimond June 21, 2015 at 1:36 pm Hi Ed; I never received it.Maybe hubby deleted it by accident.Can you resend when you have time. XXX to the family Ed June 16, 2015 at 7:58 pm Lynne, I am doing well. I responded to you in a separate email and sent you Susan’s paper on the AP paper. Ed Lynne Guimond June 16, 2015 at 10:36 am 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 Mary Kay Lenti April 28, 2015 at 4:39 pm What a great site! You have dedicated yourself to this informative site and I am truly grateful. Mimih March 24, 2015 at 8:04 am 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 Ed January 21, 2015 at 3:43 pm Thank you – much appreciated. Bremda B January 21, 2015 at 3:14 pm 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! Mari November 27, 2014 at 8:43 am Happy Thanksgiving ,Ed. I am grateful for your dedication and generosity. Ed November 20, 2014 at 9:47 pm 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. Melissa November 20, 2014 at 7:03 pm 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! Jill November 20, 2014 at 9:36 am Thank you Ed for creating this website. Jill Ed November 17, 2014 at 9:57 pm 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. Judith November 17, 2014 at 9:03 pm 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 Melissa November 14, 2014 at 5:56 pm 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!!! Ed November 14, 2014 at 11:50 am 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. Melissa November 14, 2014 at 9:46 am 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! Lumi November 11, 2014 at 2:36 pm Thanks for all you do Ed. You have much to be proud of! lumi Ed October 4, 2014 at 9:37 am 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. Judy October 4, 2014 at 9:30 am 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!!!!! Blake October 1, 2014 at 11:52 pm Ed where have you gone.. See you are inactive.. want to talk re: Your information to Doc.. please contact me. Ed September 26, 2014 at 10:30 am 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. cyndi repole August 25, 2014 at 5:32 pm Who has reviewed this website for medical accuracy ? Do you have doctors on staff helping with this information?