Positive ANA, SCL-70 but no symptoms - are other people in the same situation?
Posted 17 April 2009 - 08:20 AM
After a battery of blood tests by an over-eager, new family general practitioner last October, my ANA panel came up positive with a Scl-70 of 1.6. My general practitioner immediately 'diagnosed' me with an autoimmune disease, but did not specify which one - it was left to me to find out when I went online after my visit to him. To say that I was horrified would be an understatement! :-(
I had initially visited my doctor regarding anemia (due to heavy periods), occasional muscle pain and anxiety. It may be worth noting that a year earlier, I had nearly died from an anaphylactic reaction to antibiotics, which left me in hospital for 5 days. I was tested at that time for ANA, etc and came up negative for everything. Obviously, the current antibodies have developed since that episode.
I waited 3 months to see a rheumatologist, who is fortunately a specialist in scleroderma, and she could find no symptoms or clinical evidence of the disease. She urged me to not worry, and - after some serious prodding from me - guesstimated my chance of developing the disease as 1%. I'm not entirely this optimistic, however, having seen many different values assigned to the positive predictive weight of the Scl-70 test.
I have read that some research conducted in Oman, Canada and Poland using blood donor samples that Scl-70 can occur in healthy individuals who do not show any signs of the disease. (The other side of that argument, as some rheumatologist hazards, is that they may develop the disease at a later point.) I also gather that a proportion of individuals who test positive for ANA/Scl-70 but are absent symptoms - even though the SCL-70 test may be 99.5% specific (!!) - will NOT develop the disease. This apparently happens when we take into account the sensitivity of the test (e.g. the number of diagnosed individuals who test positive), the specificity (the % of negative results that are 'true negatives') with the incidence/prevalence of the disease in a given population. It involves a bit of math, which is not one of my strengths, but seems to make sense regarding the prognostic value of rheumatic testing.
Five months after the fall blood tests, I was tested again and my latest results are still positive for ANA, but the Scl-70 has dropped a bit from 1.6 to 1.3. I gather antibody levels can fluctuate.
I'm very much interested to know if anyone else on this board has also had a positive Scl-70 but has no clinical signs of the disease? Or, if people tested positive and then - at a later point - developed symptoms?
I'm a mother, a wife and a very busy university-based researcher. It's a daunting time in my life, and unfortunately - as I gather is the same for many other posters - we rarely have the opportunity to meaningfully connect with our doctors or rheumatologists, or to receive the information or guidance which is essential to helping us maintain hope or optimism, regardless of the current state of our health.
With best wishes to everyone on the boards!
Posted 17 April 2009 - 09:04 AM
First of all, welcome to the Forum. Besides having a great group of Forum members willing to share their experiences, we also have amassed a great amount of reliable information. This site complies to the HONcode standard for trustworthy health information: verify here.
We have a good page on Antibodies and several articles on Scl-70 in particular.
I am on the opposite end of the spectrum from you - I test negative for Scl-70, but have a high titer level of antinuclear antibodies in the nucleolar pattern. I was confirmed as having systemic sclerosis sine scleroderma on the basis of many clinical indications.
It's my understanding, and bear in mind I'm only an informed patient, that taken absolutely, strictly alone, in the absence of any other sign or symptom of scleroderma, that a positive Scl-70 and/or other associated antibodies, particularly in a low titer, is not a reliable indicator that one will progress to the disease.
One thing we do know is that stress is bad for you, no matter what. We have a very good section on Anxiety and Attitude. It offers some good tips and advice for dealing with anxiety that many of us have found helpful. You're in an uncomfortable position right now - faced with the unknowable. It's hard to shut off the fear long enough to look at the actual odds objectively. Been there, done that.
You were so lucky to have found a scleroderma specialist right off the bat. I'd be inclined to trust her and just keep a watchful eye out for other symptoms and, of course, have regular health checks.
Truly, welcome to the Forum. I wish you all the best!
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Posted 17 April 2009 - 09:54 AM
Thank you so much for your fast reply; it does my heart good to connect with other people in this community. You're very right about my being in a kind of 'limbo' - at-risk, but not necessarily clinical affected. It's hard to know where to place my thoughts and hopes, or fears, at such a point.
The first few months, especially while waiting to see the rheumatologist, were the worst. Every ache or pain - no matter how transient, left me so worried. It took a lot of help from a therapist to get me through the worst of the anxiety and fear; meditation helped, too. At the very least, it gave me a break from the nervous activity in my head! I do agree that stress can only compound whatever situation we're facing; the last year for me has been the most stressful of my life, and it's only now that I've taken the time to slow down and care for myself - in response to the blood tests - that I'm finding some peace and calm. I just wish it hadn't taken such a potentially big issue to make me slow down! ;-)
My husband has a chronic illness, too, which means our home situation is more fraught with health scares and crises than we can easily handle. My family is a huge support - his lives very, very far away - and we are new to the city we live in. We end up having to comfort each other through a lot of ups and downs, which is good for our marriage in some respects, but also a very sad reality at times. I often find myself nostalgic for the days before we found out about his illness, and then I had my blood test results.
I am very attentive to what may, or may not, be happening with my body on a daily basis. I find this exhausting, however. I wonder how many other people may be enduring the same thing? Some days I'm convinced something must be wrong, and whatever it was that was bothering me goes away, never to return. I also wonder about the role of fear in causing pain, or physical discomfort.
Ah, it's all so complicated!!
Thank you, Jeannie,
Posted 17 April 2009 - 10:09 AM
Jeannie, who is very knowledgable, in her own right ... has shared some great links/information which should provide you with some answers.
I was (clinically) diagnosed in 1995, with Scleroderma, four years after my symptoms first began.
I also endured more tests than I care to remember, the year I was (finally) diagnosed.
Although quite ill for some time, I never had a positive ANA panel. However, the evidence was strong, in my case, that I had/have Scleroderma, where my docters were/are concerned.
However, their opinions have changed over time, as to whether mine is limited or diffuse... the latest being diffuse.
Although my case demonstrates the "other side of the coin", I do want to say that I've also been fortunate with having the knowledgeable doctors I've had over time.
I hope you will keep us abreast of any new information/changes that may come to light, Elizabeth.
In the meantime, I'll keep good thoughts about you!
Posted 17 April 2009 - 03:46 PM
I, too, tested normal ANA, and yet systemic scleroderma is my diagnosis.
Posted 17 April 2009 - 05:11 PM
Welcome to ISN! I'm sorry to read about all that you and your husband are going through right now. Thank goodness you have a strong, supportive family and good doctors. Both are so very important as you already know. It does sound like you have a good doctor that is staying on top of things.
Please know that I am not a doctor. I can only relay what I learn from reliable sources such as ISN. In reference to blood tests, they aren't 100% accurate. There are false positives and false negatives. Positive blood tests indicate that you have a predisposition for something. For example, in the antibodies link that Jeannie provided you'll find a section on ANA. The MedineNet.com link states that "ANAs indicate the possible presence of autoimmunity. " The same can go for other antibodies. I have a positive ANA but negative Scl-70. My diagnosis of SSc was made based on my symptoms and nailfold capillaries.
It sounds like you have a great awareness of your body, but like so many of us it's hard not to read more into something that we feel. It's important to just relax, enjoy all the little things in life because they are just as important as the big things.
Please stay in touch and let us know how you are doing. We're so glad you've joined us.
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Posted 17 April 2009 - 05:59 PM
Welcome to the forum. You will find lots of support and knowledge here. Never fear to ask a question. I am also newly diagnosed in February. I had a positive ANA and ACA but negative Scl70. I also had weird symptoms that just finally reached the threshold of interfering enough with my life that I mentioned them to my doctor. I know how maddening it is to have a healthy body one week and then given this diagnosis the next week. It is a strange beast for sure. That is the struggle with this thing - no one knows what it will do, when it will do it or why. So the best you can do is take the best care of yourself and husband and live every day to the fullest.
Posted 18 April 2009 - 04:56 AM
I wanted to join in and welcome you to the sclero forums. My situation is different than yours, I do have symptoms. Jeannie provided excellent links that I hope will shed light on our situation. I'm really glad you've joined us and I truly look forward to knowing you better.
Posted 18 April 2009 - 06:43 AM
I wanted to jump in here and join everyone in welcoming you to the forum.
The diagnosis limbo dance is something many of us know well, with a very rigid "bar" to try to fit under and endless confusion to the tempo of the conditions.
When it comes to autoimmune conditions, I think that the world will be a better place when some day in the distant future we are living in a "Star Trek" existance and they simply pass a little box over us and it reads out exactly what is going on with us in seconds.
As an example from my own family as to just how confusing it can all be, all my Aunts have SLE (lupus) and the one with the largest battle against it and the most severe symptoms has a titre that is high normal, yet her brother (my Uncle) has an extremely high titre and has for over a decade, yet has never had a single symptom.
As you look around the forum you will find that we are a very huggy bunch, prone to spontaniously break into a group happy dance when good news is shared and tickle each other's funny bones without warning.
So, pull up a chair.... the hats for the happy dances are kept in the corner, spare hugs can be found with every member and you will find laughter likes to sneak up on you when you least expect it.
Posted 18 April 2009 - 08:25 AM
Thank you for your note - and thank you, too, to everyone who answered my post. It is hugely comforting to know that I am now a part of a community of people who are at all stages of their experience with autoimmune issues, disorders and also disease. It's also encouraging to know that, despite peoples' own struggles with scleroderma, that they are still there to participate with the community, do their happy and diagnosis limbo dances, and share a joke every now and then. That's a sign of health even unto itself! :-)
It is also very interesting to hear about your aunt and uncle's experience with lupus; obviously, titre can't easily be matched up to the stage of a disease or its manifestations. As you say, it would be much 'nicer' if we could be diagnosed - a la Star Trek technology - and then left to cope with the answer, whether good or bad. This being-in-the-middle is a very stressful experience. I'm learning better to cope, as I said, thanks to meditation at home and at a local meditation centre, and there is a wonderful expression my mother uses to help coax me through the worst of my fears. It was a saying of Julian of Norwich, a 13th century English mystic who nearly died due to some ailment in her mid-teens, and after surviving shared a number of her mystical visions and insights into the nature of health and a greater power.
All shall be well
And all shall be well
And all manner of things shall be well.
I say this to myself when things get really overwhelming, over and over, and after a while, it allows me to pull out of my fixation with my body, feelings, possible symptoms, and focus back on the world I live in - complete with family, friends, actitivies, goals, passions. But it's a hard slog, and I'm not anywhere really treacherous yet in my journey, so I do realize that it's a process that requires additional work and support. I'm just hopeful that I can maintain my health the way it is, notwithstanding the scl-70 titre.
Many thanks to you all - these postings do me a world of good.
Posted 18 April 2009 - 09:40 AM
According to my blood tests my ANA is negative and alsways have been, the raging symptoms caused the diagnosis. I have no idea what my SCL-70 is!
It won't be easy to find the fine line between thinking every twinge is the beginning of sclero and carrying on regardless whilst being aware of any radical changes.
Having sclero is unpredictable, you never know what's coming next so you're in good company!
As you may never develop a symptom and you have a good life pack sclero off to the back of your mind and live your life. At first it will obsess your thoughts, a lot of us when first diagnosed immersed ourselves in all things sclero, but this phase will pass.
Even if you did develop sclero it's by no means the end of the road, there's good life to be had after sclero it just looks nothing like you thought it would but that doesn't have to be a bad thing.
Keep posting as it helps to bring the fears out into the open so you can release them.
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Posted 20 April 2009 - 04:31 PM
I also have a positive scl-70 and no diagnosis. I tested positive about 8 months ago. It is hard to describe how difficult the past months have been, but the truth is that like Amanda said it does not have to be the end of the world and it doesn't necessarily mean you will develop the disease.
I recently went to the scleroderma center at Johns Hopkins and while my doctor recognized that we have to keep an eye on things, he told me that as long as I don't present any symptoms; I should go on with my life as I would without the positive result. The scleroderma diagnosis is clinical not based on a blood test, some people just have these antibodies for no reason.
I do have little aches that come and go, and recently I have developed really sore elbows, which hasn't gone away. It is very scary and I totally understand what you are going through. My advice to you is to find a specialist and to follow up; but don't feel or think like you already have the disease. I did and made some very poor decisions out of desperation and anxiety. Here I am 8 months later and no major symptoms, and hopefully I will never develop it.
One thing you might want to get checked is your vitamin D. This is the first and only prescription I got at the scleroderma center for my "symptoms". My levels were extremely low. I have been taking (at my doctor's recommendation) 50,000 IU weekly for the past 3 weeks.
Hope you feel better, warm hugs to you
PS: what was the normal scl-70 range from your lab? My highest scl-70 level was 152 with anything over 99 considered positive.
Posted 30 April 2009 - 01:50 PM
My rheumatologist wants me to be retested in a few months to see if it could have been a false positive.
Posted 01 May 2009 - 03:59 AM
Thank you for writing, and I do want to reassure you that simply having a positive ANA/scl-70 does not always mean you have a disease. I've had my own serious scares about this subject, and done a LOT of background research into the prevalence of auto-antibodies (ANA) and antigen-specific antibodies (e.g. scl-70) in different patient populations across Europe, North America, the Middle East and South-East Asia. There is sometimes incredible variation in the numbers of people who test positive for these auto-antibodies - even when research units use the same methods to determine the antigen titre/level (e.g. ELISA).
I'm also in the same situation as you, so do urge you to write to me, whenver you feel like it, to talk more about the issues we're facing. I've heard from several other people on these boards who are also positive for both antibodies and present with no symptoms.
I'm not sure how correct I am with this (I'm sure one of the moderators could clear this up), but I had thought a false-positive is typically someone who presents with the antibodies but does not have symptoms of disease. A false-positive, therefore, stands opposite to a true-positive, where you have both symptoms and the disease.
I am also taking Vitamin D - and was lacking in this. I'm prescribed 63,000 IuI/week. Remember to drink lots of water, too!
Best wishes to you,
Posted 04 May 2009 - 08:55 AM
Anyway, my doctor took blood again today with a retest of the Scl-70 being one purpose. He wasn't really all that clear, but I assume this could mean the results were a fluke or a lab error. I'm not too into speculating on that, but not sure why else he would retest right away. He did ask me several questions, and confirmed I am really not showing the symptoms.
Any interesting aside, which was brought up a few times on this thread, is that I've had a vitamin D deficiency for a few years. Lots of people here mentioned they are now taking it, but I don't yet understand how this is related to scleoderma, and especially for those who are showing no symptoms. Is this just a precautionary measure? Did any of you have low levels, and is that a known indicator of scleroderma?
Just some other history as an aside. I have been diagnosed with fibromyalgia several years ago, and more recently with GERD and osteoperosis. The interesting part is that I'm a 30 year old male, so none of these things are really too common in my demographic.
Sorry for the rambling, and I look forward to any insight you can provide on the vitamin D aspect and my situation in general.
Posted 04 May 2009 - 10:24 AM
Here is our page on Vitamin D Deficiency, Sunshine, and Scleroderma. Hopefully it will fill you in. In the meantime, browse around and get to know us. Hopefully others will be able to shed some light on your other concerns.
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Posted 04 May 2009 - 10:59 AM
It's really hard to say what's up with the Scl-70, isn't it? Have you thought of asking your doctor why they ran an Scl-70 on you, if you didn't seem to have numerous or significant symptoms of scleroderma?
I'd be curious as to whether or not your doctor is noticing some signs or symptoms that you are not. I've been very surprised in reading over my medical records how many items were noted by doctors but never even mentioned to me, including things like periungual erythema, livedo reticularis, etc.
In any event, I hope it all turns out to be lab error and you are set free and clear of any concerns regarding scleroderma. Please let us know how it turns out, either way.
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Posted 04 May 2009 - 11:11 AM
I wanted to quickly answer Shelley's question regarding why the test was run. As I mentioned, I was diagnosed with fibromyalgia some time ago and some of my main symptoms are fatigue and a burning sensation throughout my body. I also rarely have a feeling of weakness, which has been going on for 10 years. I believe some of that had to do with the test being run. However, the most recent trigger was some irregular results in an EMG. I have some nerve damage in half of one of my arms not attributed to a pinched nerve. The neurologist seemed fairly confused about the cause, and ordered a bunch of blood tests at that time. I guess this was one of them. I am not really sure if there is a direct link between the nerve issues and scleroderma. I don't appear to have any of the other symptoms I've read about, aside from GERD.
I'm with you - I hope the test was a fluke. I have enough other chronic illnesses to deal with at this point.
Posted 04 May 2009 - 11:37 AM
I am so sorry that you are going through this. So much worry and anxiety seems to accompany these conditions, doesn't it?
I seem to be opposite of you in that I tested negative for Scl-70 and my ANA is normal but I have sclerodactyly (skin tightening on hands and feet) and morphea (non-raised red rash) on my legs. It seems to affect everyone so differently that one may think we are talking about different conditions.
I wish you luck in your journey.
Posted 05 May 2009 - 05:09 PM
I came on this site because I saw your post. I too tested positive for scl-70 autoantibodies, but do not have symptoms. About a year ago I developed iritis and my doctor ran some tests to see if it was related to an autoimmune disease. My ANA was positive, as was scl-70. I went to a rheumatologist who did more tests and he said that I did not have scleroderma. He also said that he has seen quite a few people in the last few years who, like us, get a positive scl-70 but do not have scleroderma. Like you, I am still concerned and I notice every little skin change or joint pain. I had Guillain Barre Syndrome, which is also considered an autoimmune disease, over 30 years ago and I have neurological problems related to that. I had a doctor tell me recently that the autoantibodies are still not totally understood and that I shouldn't worry about it, but I do.