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76 Comments
Ed Harris
May 22, 2024 at 4:20 pm
Thank you. Our goal is to provide detailed but understandable research-based information to help to educate people so they can work more effectively with their team of clinicians.
Rosemary
May 22, 2024 at 1:53 am
Thank you so much for presenting a website to help inform others. Yes it is scary when you find out you have an autoimmune disease. I truly appreciate your contribution to help people learn about Scleroderma. I had Progressive Systemic Scleroderma and Dr. Burt did a Stem Cell Transplant that stopped the progression of the disease. Transplant was 2/22/2011. Thank God for people like Dr. Burt and you for educating all of us about Scleroderma. Keep up the great work. Thank you again Mr. Harris.
Terry
September 13, 2023 at 2:12 pm
Thank you Ed. I will bring this to the attention of my Rheumatologist.
Ed Harris
November 16, 2022 at 9:39 pm
My immediate reaction is that you need to see scleroderma specialist at a scleroderma center for a more accurate diagnosis. For example, you would want to go to a place that can do high magnification nailfold capillary imagery to help firm up the correct diagnosis. Many general rheumatologists have little current training in this rare family of diseases, which is why I always recommend getting a referral to a scleroderma specialist if at all possible.
Edith Bradberry
November 16, 2022 at 8:17 pm
I am not diagnosed with Limited Scleroderma although I have a positive ACÁ, Raynaud’s, GERD, changes in my hands that the rheumatologist is calling RA ( although I am seronegative for RA), have had 3 episodes of iritis and very tight joints with constant pain if I do not stay stretched. My question or questions are 1) can PPE be used without a scleroderma diagnosis and 2) can it help the tightness and muscle pain?
Rita Tattersall
June 29, 2022 at 4:43 pm
I am interested in pursuing TPE treatment for my limited scleroderma. I am desperate. I live in northern Delaware. Can you help me find a doctor willing to order this treatment for me?
Rita Tattersall
Email.. ttatter@aol.com
Lucille Franke
February 25, 2022 at 11:51 pm
pls set up a Registered Education Project in Canada…..to donate to…..
pls confirm that this has been done…..thx.
Ed Harris
November 28, 2021 at 4:33 pm
Thank you for your kind words. I felt exactly the same way in 1990 when I was first diagnosed, but this was before the Internet and it was impossible to get information outside of medical textbooks. My goal for the website is to provide understandable, up-to-date information on this complex family of diseases, so people can work more effectively with their team of physicians. I am glad that you are finding it helpful and reassuring.
Karina Douglas
November 28, 2021 at 2:30 pm
Thank you for all of your efforts, your time and your passion to help! As a mother of two, a wife, a daughter….you have brought hope in one of the most terrifying times in my life. With infinite gratitude, THANK YOU! Karina
Ed Harris
June 21, 2021 at 4:29 pm
Ashley,
First, it is important to realize that systemic scleroderma is a clinical diagnosis supported by lab tests, NOT the other way round. ANA and antibody testing is very important and useful, but not required for a diagnosis. Generally, if you have a positive Scl-70 done by a typical testing method but the ANA/IFA is negative, that strongly suggests that the Scl-70 is probably a false positive. However, it is a but fuzzy when the lab uses a 1:80 ANA titer cutoff rather than the lower 1:40 cutoff. The easiest way to find out if the Scl-70 is a false positive is to retest at LabCorp using order code 520012. This is a two step testing method that will give you much more reliable results than the type of testing that you had done previously.
Ashley Wells
June 17, 2021 at 9:27 pm
Hi. I had a positive ANA last year and they referred me to rheumatology. I tested high/positive for scl-70 but no other tests came back bad in coordination with scleroderma. They retested my ANA because it didn’t have what it was just that It was positive. My rheumatology office doesn’t test under 1:80 titer… the rheumatology ANA was negative. I’m so very confused on whether I have scleroderma or not based on all this information.
All other tests they done is as follows
Rdw: 13.2 (slightly elvated based on their scoring system)
Neutrophils 67.8 (slightly elvated based on their scoring system)
chloride 98 ( slightly low based on scoring system)
B/c 24 (slightly elvated based on their scoring system)
Gfr 90
Sed rate 22 (slightly elvated based on their scoring system)
Scl-70 Antibody-my Value2.5 [IU]/mL( standard Range0.0 – 0.9 [IU]/mL)
Additional information : I have factor v and MTHFR blood clotting disorders.
Medication currently taking: celexa, ativan, lisinopril
Ed Harris
April 26, 2021 at 11:08 pm
Since this changes frequently, I would consult the CDC website for current guidelines.
Betsey Clopine
April 26, 2021 at 8:58 pm
Is anymore known what those of us who have had the two covid vaccinations and had a negative antigen test (spike) can do.? With restrictions being lifted we are even more vulnerable. It’s like March 2020 all over again!
do you advise people with sleraderma to get the covic vacine
Ed Harris
October 27, 2020 at 7:13 pm
It can be a false positive, even at that relatively high level, but it is less likely than at a lower level. There is now an easy way to find out. Ask your doctor to order an Scl-70 antibody test through LabCorp with an ordering code of 520012. That initially tests by ELISA and if positive, it is re-tested using double immunodiffusion, which doesn’t have the false positive problem.
Wendy
October 27, 2020 at 7:04 pm
I was tested 2 years ago and came back Ana w/reflex positive positive and antiscleroderma-70abs of 4.2. Was sent to a rheumatologist and they said I did not have it due to no symptoms other than muscle/joint pain and numbness. Within the last few months I have had an mri and ct scan that show enlarged liver, spleen, uterus, ground glass opacities in my lungs and white spots in brain along with swelling in hands. Are the blood results possibly false positive or misdiagnosis?
Ed Harris
August 4, 2020 at 9:55 pm
It is actually very tricky to directly test for red blood cell clumping. No commercial labs in the US offer this test, to the best of my knowledge, just some research labs. The instrument that can measure this costs more than $60,000 and you have to be close to the lab to get the specimen tested quickly or do very expensive overnight refrigerated shipping. Even whole blood viscosity is difficult, but there is one lab in Seattle that does offer this testing. It turns out that there is a simple formula for estimating whole blood viscosity using just hematocrit and total protein. This is useful in clinical studies to look at changes in whole blood viscosity. Sed rate (ESR) is actually highly correlated with red blood cell aggregation, but many things can effect this measure. In the one published case report, we did see gradual reductions in ESR over time, suggesting that RBC aggregation levels were dropping, but the initial ESR values were in the normal range so this measure is also mostly useful to look at changes in a clinical trial.
NOEL TOWLEY
August 4, 2020 at 8:47 pm
Hi Ed, Regarding TPE, Is there a blood lab that can be drawn from a scleroderma patient’s blood to confirm whether they currently have elevated “red blood cell clumping”?
Ed Harris
November 2, 2019 at 1:26 pm
Thank you for bringing up this issue. This has occurred before and we sent out a notice manually and can do that in this case. You can contact us at info@sclerodermainfo.org with the information and we will send out a notice for you.
We will have our IT person look into changing the donation page to allow this.
Patricia Blackman
November 2, 2019 at 12:37 am
I want to make a donation in memory of a friend who passed away, as this is my charity of choice. There is no way to do this as in other charities, wherein they would receive a confirmation that a donation has been made in their spouse’s memory. Can this be done? I can provide an email to let them know a donation has been made in memory of their spouse? Can you do this so I can make a donation in their memory, and a confirmation that a donation was made is sent.
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?
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?
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 eharris@sclerodermainfo.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?
Thank you. Our goal is to provide detailed but understandable research-based information to help to educate people so they can work more effectively with their team of clinicians.
Thank you so much for presenting a website to help inform others. Yes it is scary when you find out you have an autoimmune disease. I truly appreciate your contribution to help people learn about Scleroderma. I had Progressive Systemic Scleroderma and Dr. Burt did a Stem Cell Transplant that stopped the progression of the disease. Transplant was 2/22/2011. Thank God for people like Dr. Burt and you for educating all of us about Scleroderma. Keep up the great work. Thank you again Mr. Harris.
Thank you Ed. I will bring this to the attention of my Rheumatologist.
My immediate reaction is that you need to see scleroderma specialist at a scleroderma center for a more accurate diagnosis. For example, you would want to go to a place that can do high magnification nailfold capillary imagery to help firm up the correct diagnosis. Many general rheumatologists have little current training in this rare family of diseases, which is why I always recommend getting a referral to a scleroderma specialist if at all possible.
I am not diagnosed with Limited Scleroderma although I have a positive ACÁ, Raynaud’s, GERD, changes in my hands that the rheumatologist is calling RA ( although I am seronegative for RA), have had 3 episodes of iritis and very tight joints with constant pain if I do not stay stretched. My question or questions are 1) can PPE be used without a scleroderma diagnosis and 2) can it help the tightness and muscle pain?
I am interested in pursuing TPE treatment for my limited scleroderma. I am desperate. I live in northern Delaware. Can you help me find a doctor willing to order this treatment for me?
Rita Tattersall
Email.. ttatter@aol.com
pls set up a Registered Education Project in Canada…..to donate to…..
pls confirm that this has been done…..thx.
Thank you for your kind words. I felt exactly the same way in 1990 when I was first diagnosed, but this was before the Internet and it was impossible to get information outside of medical textbooks. My goal for the website is to provide understandable, up-to-date information on this complex family of diseases, so people can work more effectively with their team of physicians. I am glad that you are finding it helpful and reassuring.
Thank you for all of your efforts, your time and your passion to help! As a mother of two, a wife, a daughter….you have brought hope in one of the most terrifying times in my life. With infinite gratitude, THANK YOU! Karina
Ashley,
First, it is important to realize that systemic scleroderma is a clinical diagnosis supported by lab tests, NOT the other way round. ANA and antibody testing is very important and useful, but not required for a diagnosis. Generally, if you have a positive Scl-70 done by a typical testing method but the ANA/IFA is negative, that strongly suggests that the Scl-70 is probably a false positive. However, it is a but fuzzy when the lab uses a 1:80 ANA titer cutoff rather than the lower 1:40 cutoff. The easiest way to find out if the Scl-70 is a false positive is to retest at LabCorp using order code 520012. This is a two step testing method that will give you much more reliable results than the type of testing that you had done previously.
Hi. I had a positive ANA last year and they referred me to rheumatology. I tested high/positive for scl-70 but no other tests came back bad in coordination with scleroderma. They retested my ANA because it didn’t have what it was just that It was positive. My rheumatology office doesn’t test under 1:80 titer… the rheumatology ANA was negative. I’m so very confused on whether I have scleroderma or not based on all this information.
All other tests they done is as follows
Rdw: 13.2 (slightly elvated based on their scoring system)
Neutrophils 67.8 (slightly elvated based on their scoring system)
chloride 98 ( slightly low based on scoring system)
B/c 24 (slightly elvated based on their scoring system)
Gfr 90
Sed rate 22 (slightly elvated based on their scoring system)
Scl-70 Antibody-my Value2.5 [IU]/mL( standard Range0.0 – 0.9 [IU]/mL)
Additional information : I have factor v and MTHFR blood clotting disorders.
Medication currently taking: celexa, ativan, lisinopril
Since this changes frequently, I would consult the CDC website for current guidelines.
Is anymore known what those of us who have had the two covid vaccinations and had a negative antigen test (spike) can do.? With restrictions being lifted we are even more vulnerable. It’s like March 2020 all over again!
The current guidelines from the American College of Rheumatology for people with autoimmune diseases is a good place to learn about this important topic: https://www.rheumatology.org/Portals/0/Files/ACR-COVID-19-Clinical-Guidance-Summary-Patients-with-Rheumatic-Diseases.pdf. Also, each vaccine has its own list of recommendations for people with various risks, e.g., previously allergic reactions. Ultimately, this is an important topic to discuss with your physician.
do you advise people with sleraderma to get the covic vacine
It can be a false positive, even at that relatively high level, but it is less likely than at a lower level. There is now an easy way to find out. Ask your doctor to order an Scl-70 antibody test through LabCorp with an ordering code of 520012. That initially tests by ELISA and if positive, it is re-tested using double immunodiffusion, which doesn’t have the false positive problem.
I was tested 2 years ago and came back Ana w/reflex positive positive and antiscleroderma-70abs of 4.2. Was sent to a rheumatologist and they said I did not have it due to no symptoms other than muscle/joint pain and numbness. Within the last few months I have had an mri and ct scan that show enlarged liver, spleen, uterus, ground glass opacities in my lungs and white spots in brain along with swelling in hands. Are the blood results possibly false positive or misdiagnosis?
It is actually very tricky to directly test for red blood cell clumping. No commercial labs in the US offer this test, to the best of my knowledge, just some research labs. The instrument that can measure this costs more than $60,000 and you have to be close to the lab to get the specimen tested quickly or do very expensive overnight refrigerated shipping. Even whole blood viscosity is difficult, but there is one lab in Seattle that does offer this testing. It turns out that there is a simple formula for estimating whole blood viscosity using just hematocrit and total protein. This is useful in clinical studies to look at changes in whole blood viscosity. Sed rate (ESR) is actually highly correlated with red blood cell aggregation, but many things can effect this measure. In the one published case report, we did see gradual reductions in ESR over time, suggesting that RBC aggregation levels were dropping, but the initial ESR values were in the normal range so this measure is also mostly useful to look at changes in a clinical trial.
Hi Ed, Regarding TPE, Is there a blood lab that can be drawn from a scleroderma patient’s blood to confirm whether they currently have elevated “red blood cell clumping”?
Thank you for bringing up this issue. This has occurred before and we sent out a notice manually and can do that in this case. You can contact us at info@sclerodermainfo.org with the information and we will send out a notice for you.
We will have our IT person look into changing the donation page to allow this.
I want to make a donation in memory of a friend who passed away, as this is my charity of choice. There is no way to do this as in other charities, wherein they would receive a confirmation that a donation has been made in their spouse’s memory. Can this be done? I can provide an email to let them know a donation has been made in memory of their spouse? Can you do this so I can make a donation in their memory, and a confirmation that a donation was made is sent.
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.
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.
Could you clarify your question? What are you referring to?
Does this have any effect on neuropathy or just Reynaud?
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!
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.
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.
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).
My doctor started me on cellcept, is this the right med to be in. I was diagnosis with crest syndrome.
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.
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
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?
Who can I talk to about getting more info on labs?
Hurrah! At last I got a webpage from where I be capable of truly get useful facts concerning my study and knowledge.
Thank u for this. -Kelly Knecht.
This is a lot of great information.
Anyone can email me directly at eharris@sclerodermainfo.org.
Ed
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?
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.
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.
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.
It seems to be working OK. Perhaps my website was down for a time. Please try again and contact me directly at eharris@sclerodermainfo.org if you still can’t access it.
I cannot access Scleroderma Antibodies page of FAQ.
I just found this site ,I too have this disease, I call it a curse,writings to follow
I would suggest you go to the Scleroderma Foundation website (scleroderma.org). They have a section that lists scleroderma clinics around the country.
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.
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
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.
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
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?
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.
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!)
Lynne,
I just sent it directly to your citenet email address. Let me know if you get it this time.
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 am doing well. I responded to you in a separate email and sent you Susan’s paper on the AP paper.
Ed
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
What a great site! You have dedicated yourself to this informative site and I am truly grateful.
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
Thank you – much appreciated.
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!
Happy Thanksgiving ,Ed. I am grateful for your dedication and generosity.
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.
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!
Thank you Ed for creating this website.
Jill
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.
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
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!!!
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.
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!
Thanks for all you do Ed. You have much to be proud of!
lumi
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.
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!!!!!
Ed where have you gone.. See you are inactive.. want to talk re: Your information to Doc.. please contact me.
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.
Who has reviewed this website for medical accuracy ? Do you have doctors on staff helping with this information?