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SCL-70 and Sine


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#1 Sticky

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Posted 18 November 2012 - 09:42 AM

Greetings,
I am new here and have been on a six year journey that thus far indicates Sine Scleroderma. However according to my rheumatologist I do not have scleroderma because I have no hard skin and he tossed out the test results.
He may have a valid reason for saying that or maybe not so valid, but I'm sure those here would agree that the subset Sine would apply here.

Now I have had a comprehensive immune test done at a major medical centre on Nov. 8th and am set to see one of their doctors next month. However I am trying to get a second opinon before going there (long story)
Here are some hightlights of that test with my results in the first column with normal ranges to the right.
Thoughts any one?

ANA 10.1 units (0.0-1.0)
SCL-70 3.7 units (0.0-0.9) positive

Sed rate 50.0 mm/hr (0-22)
CRP Quant 46.8 mg/l (0.0-8.0)

#2 judyt

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Posted 18 November 2012 - 03:23 PM

Hi,
Sorry to hear that you are having difficulty getting a diagnosis. I don't understand your blood test results, they are shown in a different from what I recognise but from my experience your symptoms would be more useful as a gauge.

I have had symptoms since 1966 and didn't get a diagnosis until 2003 when damage to my organs was well established and too late to do anything to help except surgery.


Do you have Raynauds,or Esophageal dismotility, or Calcinosis (even a little bit) or Telangectasias on face and hands, or deranged cuticles and fat fingers called Sclerodactyly? I have all those things as well as damage to my bowel BUT I have NO HARD SKIN. As well I have dry mouth and eyes as in Sjogrens, Migraines and poor vascular health leading to extreme varicous veins and varicose ulcers. Some Researchers say Scleroderma is a vascular disease.

I sometimes wonder if it took so long to get a diagnosis because I have no skin or joint involvement. Everybody is so different. When I was diagnosed my ANA was 1:1280 with a Centromere pattern and that is the sort of result I would recognise. I have a re-test from time to time and the ratio can change but the pattern stays the same.

Best of luck with getting a helpful diagnosis.
Best wishes
Judyt

#3 Sticky

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Posted 18 November 2012 - 07:43 PM

Thanks Judy and here are my symptoms
I do have serious esophageal issues, very inflamed but not yet informed of actual motlility, however I'm still wondering about my current doctor. I also had 3 pre-cancer poylps removed a year ago, colonosocopy. I did pass a barium scan but was told I had acid reflux regardless due to my weight (250#) at 5'10" I also have sleep apnea.

At first it was thought I had Psoritic Arithritus, at onset I was hit in lower and upper back, severe neck pain, sausage digits (sometimes puffy now), feet and calves stiff and extremely painful when walking at work. My feet would make popping noises like silly putty after a shift at work. Very painful to the point of not able to walk. Hands, fingers stiff but joints feel okay. This was a year ago but I have had problems for the past six years.

I have morning stiffness; its two hours before I can move around. Once I get going I have to be very careful to not over do anything else or I'm stiff all over that night and cannot move. I also cannot sit for very long without becoming stiff. Basically, if I watch TV I need to move about during a commercial. I cannot stand longer than 20 minutes or my feet feel like its 12 hours of standing.

There are some vascular issues, legs mostly. I have flare ups in my elbows, nasty ones from any over activity. Fatigue and malaise. Chronic sinusitis.
I was on methotrexate (MTX) which cleared the psoriasis but led to transient ischemic attacks after 24 hrs of taking it. I also tried Humira which helped a little. NSAIDS were not effective so all have been stopped.

I have a recurring infection, why or what we do not know at this time, but suspect its from my esophagus issues. About every six months the last six years, but now every 3 months the last year.

The SCL-70 range for their lab is 0.0 to 0.9 normal, 1.0 to 2.9 weakly positive, 3.0 to 5.9 positive and 6.0 and above strongly positive for Scleroderma. Mine is 3.7

My ANA is considered extremely high as are the last two tests for inflammation.

As for any skin issues you spoke of, none that I can tell.

#4 judyt

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Posted 18 November 2012 - 10:04 PM

Lots of people have a positive SCL-70 and it never comes to anything, I think the appropriate symptoms are more of a guide.

However, remember I am not medically trained, I can't even boil potatoes without burning them!! So getting another opinion is important and you seem to be doing that.

Judyt

#5 Kathy D

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Posted 19 November 2012 - 01:41 AM

Please see a new doctor if you can. I am in the US and don't know where you are and if you can, but a second opinion is always a good idea if you question your care.
Diffuse Scleroderma Diagnosed March 2009

#6 Sticky

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Posted 19 November 2012 - 06:42 AM

Thanks for the advice.

I visit a major medical center next month and still trying to see another doctor. Its hard as I live in the state of Florida and this time of year, any and all is booked solid till season is over. What I do is call each day for a cancellation. That's how I went from February 1st to next month for my appointment. ;)

#7 Joelf

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Posted 19 November 2012 - 01:09 PM

Hi Sticky,

Welcome to these forums!

I'm sorry to hear that you're suffering with so many unpleasant symptoms. Unfortunately, Scleroderma is notoriously difficult to diagnose and as Judy has pointed out, it's more reliably diagnosed by clinical symptoms, rather than blood test results alone. This is because one of the variables of this complex disease is that people can have positive blood tests and yet never go on to develop full blown Scleroderma and vice versa.

I've included links to our medical pages on Gastrointestinal involvement and Fatigue to give you some more information. It's a good thing that you're visiting the Mayo Clinic; we do recommend that if possible our members consult a Scleroderma expert, as it is so difficult to obtain a firm diagnosis, not less because Scleroderma presents in so many different forms. I have lung involvement, joint pain, Raynaud's, swollen fingers etc., but very little skin involvement (merely the tips of my fingers).

I do hope that you are successful getting to see a specialist at the medical center and that they will be able to give you a diagnosis and a treatment plan to hopefully make you feel much better.

Kind regards,

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#8 winnie97

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Posted 19 November 2012 - 01:55 PM

Hi, I am glad you have found us; unfortunately diagnosis can be a long and difficult path.

I was finally diagnosed in 2008 only after I moved house and had a new general practitioner who decided that there had to be something wrong with all my symptoms. My other doctor had dismissed them; after 9 months of tests and to and fro to the hospital I had the answer; even though I had never heard of it until then. I knew it was something out of the ordinary as the consultant leaned over as she told me and put her hand on my knee and said sorry !!!! I don't have any of the skin problems but have Raynaud's, Sjogrens, extreme fatigue, throat problems, bowel problems and am on 40 tablets a day .

Seek a second opinion and get as much info as you can on our condition; my consultant openly told me she had never treated anyone with this before so quite often I give her information that she doesn't know. Information is key and don't be fobbed off ,

Hope your trip to the medical center gets an answer for you.

Good luck,

Diana

#9 Sticky

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Posted 19 November 2012 - 07:57 PM

Thanks all!
And glad to be here :)
One of the things that has me concerned, and I'm just going by tid bits, is that its crucial that a systemic scleroderma patient not be given predisone (read that here).

My doctor prescribed 20mg predisone per day with a 4 month supply. When told I could not have it (scleroderma) because there was no skin involvement which I knew, there are cases where there is not (talk about having my poker face on). Really piqued my curiosity.

At first I felt it was just a 21 pac but when picked up my prescription I was like "huh" sheesh enough to supply a pro football team.

Now I can see the inflammation angle and shutting down the immune system, but man oh man just don't know.

I'm still calling for a local second opinion and mid next month is not that far out for the major medical center.

I did get some steroid rage and really done a number on my legs and feet, I was up to 4AM each night so I weaned it down to .5mg and may stop all together until this gets sorted out.

Hope I'm not coming off as a whiner, it's just I have no one else to talk with about it.

#10 Joelf

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Posted 20 November 2012 - 02:36 AM

Hi Sticky,

We do have a warning for Glucocorticoids, Steroids (Prednisone) when prescribed for Systemic Scleroderma; having said that, I have been taking Prednisolone for the last three and a half years (since I was first diagnosed with Ssc). I take 10mgs/9mgs/9mgs on consecutive days (although I'm trying to reduce them at present which is why it seems a peculiar amount! ;)) and I'm monitored very regularly with blood tests etc. I'm afraid that without the steroids, my breathing and joint pain would be substantially worse. I would emphasise, however, that every case is different and what medication suits one person, may not do so for another. This is why it's very important to be dealt with by a specialist who knows the idiosyncrasis of this bizarre disease. Obviously I would rather not be taking them at all, but.....c'est la vie!! ;)

Unfortunately, they do have side effects, some of which are not apparent for quite a long time (I was very smug about the weight gain in the beginning, believing that if I reduced my calorie intake and exercised enough, I wouldn't put on weight.....not so!!! :P ) I also spent a while on a steroid high (they had me swinging off the chandeliers at first!) but thankfully for those around me, that's settled down a bit now!

Please do let us have any queries that are worrying you; we'll do our best to advise you! :)

Kind regards,

Jo Frowde
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#11 Sticky

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Posted 20 November 2012 - 08:05 AM

Thanks Joelf and Hi!

To post my whole story would be book length but they prescribed prednisone along with antibiotic and that has been every 6 months for the last six years. At the time it was due to lung issues (ex-smoker). However during my first visit at the Mayo they removed the COPD label. Surprised at that after three lung doctors went with that for so long.

Anyways my point is, I can relate with the weight gain, each time it was five pounds gained. Doing the math I can show where that attributed to my current weight.

On a side note, I find cutting carbohydrates to a bare minimum and no sugars really helped me. I've been on a diet since mid Sept and lost 25 pounds so far! Six years ago my weight was 200, mid this year I was 277, and now its at 250 after starting a diet! But will see what happens now. :angry:

No bread, rice, pasta, nothing white!

I have meat and eggs mostly, and pork rinds for snacks.

Yes, I know all the fat issues but hey one thing at a time!

#12 Amanda Thorpe

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Posted 24 November 2012 - 06:01 PM

Hello Sticky

Welcome to the forums!

What a journey and hopefully you will get your Sine diagnosis confirmed next month. Please let us know what happens!

Take care.
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#13 miocean

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Posted 24 November 2012 - 07:32 PM

Dear Sticky,

When I was diagnosed in 2004 my scleroderma specialist told me I should not ever take over 30 mg of prednisone. I have been on steroids ever since then, mostly 2 1/2 mg of prednisolone but after my kidney transplant it was necessary to take 60 mg of prednisone, over months weaned down to 5 mg which will be forever.

Like Joelf I was a little cocky about not having the weight gain as there was not problem for a year and the gain began! I also have trouble sleeping and anger issues from it. THEN I was angry because my doctors said 5mg wouldn't cause anger issues!!

All in all, sometimes you just have to deal with things. As much as I dislike the weight, it being an issue for most of my life, I like having a working kidney even more and am going to a great therapist who is giving me tools for dealing with the anger issues.

Good luck to you!

miocean
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#14 Sticky

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Posted 25 November 2012 - 04:42 AM

Hi miocean, :)

Thanks for your support and words of advice. I am struggling with the steroids. I'm at .5mg per day I just could not handle 20mg. :(

The weight in a way does not bother me, but I was chastised by a lung doctor who is world renown and really put a dent on my esteem. At the time scleroderma was not in the picture so I am the better man for it. :)

Two more weeks for my consultation! And will see what's cooking with that SCL-70 test!

I also have an amazing find for not only me but my family as well!

Low and behold I just found my great-great grandmother on the Choctaw of Oklahoma rolls! The recent brush with scleroderma put me to thinking and is why I researched my geneology.

The Choctaw of Oklahoma are 20 times more likely to develop scleroderma!

I solved a 156 year old family mystery and helped my diagnosis in one shot! :D

#15 Shelley Ensz

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Posted 25 November 2012 - 06:13 PM

Hi Sticky,

It is very interesting that you are of (partial) Choctaw descent. In fact, that alone might even explain your SCL-70.

What is going to matter, even more enormously, to the doctors, is your constellation of symptoms and whether or not any of them are specific for scleroderma, so things such as tight skin and pulmonary fibrosis go a long ways towards enabling a diagnosis. A great deal also depends on whether or not you are seeing a scleroderma expert; and the center you are going to, although it is a very major medical center, they are not listed as being a scleroderma expert center.

That's not to say they've never seen it, as surely they would see more than smaller medical centers. It's just to say that it's possible your doctor may not have yet seen a very wide variety of scleroderma cases. And what we typically seem to find is that the less doctors know about scleroderma, the more hesitant they are to even attempt to diagnose it. Of course you may be lucky and be such a standard textbook case that they can't miss it -- but most of us don't manage to be that glaringly obvious until we are well into the disease process. Typically, the fastest/easiest diagnosis is for people who rapidly develop unmistakable sclerodactyly. Thankfully, most of us do not fall in that category, however, that is the one big thing most doctors remember from medical school, so when they don't see sclerodactyly, they can quickly (and often, wrongly) assume that it means an absence of scleroderma.

So don't be too terribly surprised if they diagnose you with something else, or put you on an observational call back. And please be mentally prepared, just in case you might still need to go out of state for a scleroderma expert consultation.

It's a difficult thing to do, to hang our hopes on an upcoming medical consultation, but not so high as to be hugely disappointed by it. I developed a mental trick to handle all events, which is, no matter the outcome of the visit, it is "all good". It is good to be diagnosed; it is also good to not be so sick as to be quickly or easily diagnosed. It is good to garner another opinion, even if that opinion turns out not to be accurate. It is good to find out that that doctor is not suited to be our permanent provider. And of course it is always good to find a great doctor with an apt diagnosis and a good possibility for a long term relationship.

Here's hoping that your upcoming visit, come what may, will be "all good" for you.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#16 Sticky

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Posted 27 November 2012 - 06:55 AM

All true Shelley, but they are going to have to explain ANA 10x higher than normal along with very high inflammation. Keep in mind I was on Humira and MTX at the time ;)

For me it's not about what it is, only that it is. Folks don't want to believe something is wrong when you're very sick all the time. They believe it's all in your mind. The past six years was spent knowing something was wrong, very wrong.

For example, when I had a torn ACL and meniscus I was sent to PT with out so much of an X-ray. Could not hardly walk and trying to do ridiculous very painful exercises. Ultimately having an MRI was when the problem was found.

#17 Shelley Ensz

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Posted 27 November 2012 - 01:54 PM

Hi Sticky,

I know exactly what you mean. I went through a very long diagnostic process myself -- even at a very major world medical center.

It's from that experience that I can say, no matter how major the center is, if you don't happen to encounter the right doctor, they will very likely merrily conclude that it is all in your head, or you have another illness that they are more familiar with (RA, lupus, chronic fatigue syndrome, etc.)

I am *not* saying that you don't have the facts, the tests, the symptoms, the genetics, and the statistics on your side. I *am* saying that none of that really matters, if the doctor is not very familiar with systemic scleroderma and its myriad -- and often rather subtle -- presentations. Sometimes, even with all of that, it is *still* a waiting game for a diagnosis. However, there is one thing in your favor, and that is that males on average get diagnosed twice as fast as females with systemic scleroderma (3 years versus 6 years), which does put Hope back in your corner, especially as you've been at it six years already.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#18 Sticky

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Posted 14 December 2012 - 11:47 AM

All righty then sports fans! :)

Sine Scleroderma and Psoriatic Arthritis is the official word. Not that its great news but it sure means a lot that the guess work is over.

Having some endoscopy done on Monday and GI on Tuesday. Blood tests were funky at first glance but most likely due to current meds which has just changed. I'm going to let the doctor sort that one out . :P

Different type of biological and no more DMARDs for now, thank goodness, due to TIA's.

Peace. Out.

#19 Amanda Thorpe

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Posted 14 December 2012 - 05:27 PM

Hello Sticky

Congratulations on achieving a diagnosis and a double barreled one at that! Show off! Also I only know of one other person with sine scleroderma so, again, you're a show off!

Seriously, you can now get on with the business of treatment and hopefully getting better. You know what you're up against and that's half the battle as you have discovered.

Take care and keep posting.
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#20 Sticky

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Posted 14 December 2012 - 06:42 PM

*chuckles*
Yes, two for the price of one!

Thank you Amanda and yes it feels like 200 pounds -- er, kilos that is in your neck of the woods -- has been lifted off my shoulders!

No more fretting about what and hopefully finding some balance and with these two its up on a tight rope. :D

Cheers!