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Early Diagnosis - what difference does it make?


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#1 aka79

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Posted 30 October 2008 - 10:03 AM

Hi everybody; I am still going to doctors and doing all the tests. I just had my first PFT and echocardiogram and am waiting for the results. I am positive that I am on the early stage because I don't have Raynaud's or skin involvement. Only GI problems, a few facial telangiectasia and a "low positive" (my rheumatologist loves saying that) SCL-70. Also some little aches (knuckles, wrists, fingers) that come and go and are not too bad.

My question is regarding disease progression; what do you think? Can we really affect it with medication or will it go it's course regardless. If I'm supposed to have skin involvement will this happen no matter what and then subside after a potential plateau?

I am so worried about being disabled; I know everybody is different; but I just wanted to know your opinion. I have heard Cellcept or cyclophosphamide can keep it under control if it's early. I have not started treatment yet and have no clue what they will put me on.

My rheumatologist doesn't seem too worried; I asked if I should have a CT scan based on information from this forum and other scleroderma patients. She didn't think it was necessary yet. Can I assume if the PFT is normal that a CT scan is not necessary?

I am so scared; this journey has just started for me. I just want to stay active and continue to do the things that I love to do. Including work and staying active.

hugs

Ana



#2 Shelley Ensz

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Posted 30 October 2008 - 10:27 AM

Hi Ana,

I think most of us can relate to the challenges you are going through, waiting for a diagnosis and worried about getting treatment in time. One thing to keep in mind is that it is not necessary to be diagnosed in order for treatments to begin; and even with diagnosis, aggressive treatment may not be necessary.

The most important thing is that you have testing to determine whether you have any internal organ involvement, and, if so, whether treatment for it is appropriate at this stage.

Many of us were put on disease-modifying drugs (often, plaquenil), sometimes years before a formal diagnosis was made...based on our symptoms at the time that needed treatment; not just because scleroderma was suspected. The best approach is to make sure you are seeing a top notch rheumatologist (preferably, a scleroderma expert!) to be monitored and treated as necessary.

A fair number of us aren't on any disease-modifying treatments, but rather, only treatment for specific symptoms, as they arise. It is understandable to be worried that you, or your doctors, are doing something wrong by not treating things aggressively at this early stage. But quite often, no treatment at all is the best way to go. Scleroderma doesn't always fully develop! In a fair number of people with initial symptoms, things settle down on their own and may even go away. That is why "watchful waiting" is an important component of a scleroderma diagnosis.

Just think, you may be lucky enough that your body just naturally gets things under control...and thus entirely escape a lot of expense, and often very toxic, medications!

The most important thing is that you are monitored and watched right now...and that you take advantage of this interlude, like you are, to learn coping techniques for dealing with chronic, or just plain unpredictable, illnesses. That is very wise of you, and will serve you in good stead, whether your health worsens or improves, over time.
Warm Hugs,

Shelley Ensz
Founder and President
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.

#3 Amanda Thorpe

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Posted 30 October 2008 - 12:37 PM

Hello Ana

Yes I think treatment can slow disease progression. Initially my skin involvement moved like wildfire but now I am into a year on Cellcept and it has slowed with no discernable side effects.

At present the important issues as Shelley said, is that you're carefully monitored by a doctor profecient in scleroderma.

Just think you may never need medication so mayl never have to take 2 horse size pills twice a day!

Take care.

Amanda
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#4 Margaret

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Posted 30 October 2008 - 02:07 PM

Hi Ana ,

I, too, believe that meds help slow the disease in many people. My son started Plaquenil 9 months after the first symptoms (his were all internal) and within 2-3 months was feeling his normal self again. He's been on it for over a year now and is still doing fine....except for the reflux.

Take care, Everyone.
Margaret

#5 aka79

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Posted 31 October 2008 - 02:21 AM

Thanks for your responses. So it seems like medication can help "slow" the progression but not neccesarily reverse it. I guess I am cool with that; at least is something; maybe it can buy us some time while new treatments are developed.

Margaret, what is your son taking for the acid reflux? This seems to be the most annoying problem for a lot of us. I am taking Omeprazole and something for motility. I don't know if it helps me or not.

Thanks!
Ana

#6 smurfette

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Posted 02 November 2008 - 08:28 PM

The one thing my rheumatologist believes in is testing - he believes in checking on things and making sure that I am closely monitored so that if anything does change or start to develop it can be dealt with in the earliest stages. That is probably the best approach I have found. I left another doctor because he was too laid back. He tested only once every 2 years. I was concerned that things could go awry and they would be way too advanced before he would have gotten a grip on the situation. So, I think that the "watchful waiting" approach is best if it means that you get tested regularly and all changes are noted and followed. If those changes are indicative of a problem that should be medicated or treated in some other way, then obviously the doctor must step in and no longer just watch.

But if your doctor is not getting baselines then I think you need to see a specialist who will at least do a battery of tests to be able to establish where you are right now. Then you know where you are now and what tests in the future will be using as a comparison. Lung functions do have a normal, but if you test a little out of range now but not much and then test a little more out of range you are establishing a progression. Both figures may not be that far out of range, but you may be showing that your lungs are starting a pattern that is indicative of a problem. If there is no test now but only one in a year that pattern will not be clear for another two years. It is something like that they can catch earlier if you test early. It could be insignificant or it could be important, but it is up to the pulmonologist and the more info that you provide and the earlier, the better off you may be.

Good luck. We may not be able to cure this disease, but the sooner you treat problems, the better.
Smurfette

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#7 Looking4answers

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Posted 03 November 2008 - 04:45 AM

Good Morning...so sorry to hear that you are also going through this. All of these test, it seems like a never ending process. Question, for you, can you please let us know what your SCL-70 number is....I am trying to figure out what is low and what is high.

Best of luck to you - hang in there!

#8 susie54

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Posted 03 November 2008 - 06:00 AM

Hi,

Sorry of your diagnosis but I am in complete agreement with Shelley. Don't over treat something that is not even there. Scleroderma can be so different in everyone. I have had Mixed Connective Tissue Disease for 10 years now. I have been on Plaquenil for 6 years and have treated symptoms as they come up. I have had flareups where I treat with prednisone. Only lately have I had symptoms that require more aggressive treatment. Ten years is a long time and I am the better for not over treating.

Having the best doctors is the best way to make sure this does not happen. It took me awhile to find all of them but I have a good team on my side. Good luck with everything and take it easy on yourself. Its a lot to take in at first.

Susie54

#9 aka79

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Posted 03 November 2008 - 06:04 AM

Sure, my SCL-70 result was 127. It went from 95 to 127 in a one month period. According to the test range 120 is considered positive while anything below 100 is considered negative.

Today I got my results for the PFT and I am very confused and scared. It says my FVC and DLCO is normal (they did not give me the values even though I asked for them) but then it says I have mild obstructive ventilatory impairment with air trapping. I wonder if this is normal in a 28 year old or if it's a sclero beginning problem.

An EKG also showed marked sinus arrythmia; but my Dr said that was normal :(

I was hoping my tests would come out all normal, apparently not the case.

Really really scared and depressed...

Ana

#10 smurfette

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Posted 03 November 2008 - 08:27 PM

Don't worry too much about each and every test result. Sometimes they say things other than "normal" but our doctors are not concerned and that means you have to ask for more clarification. I often have blood work where one or two tests are out of range a bit and they frequently mean something as meaningless as I was a bit dehydrated or I was particularly allergic that day when the test was taken.
Not every result that is not quite normal means it is a very serious problem or even a problem at all. As long as you have good communication with your doctor and you ask questions about any results about which you have questions, then you are more than half way there. The most important component of the doctor-patient relationship is good communication. If you cannot get your questions answered to your satisfaction then you will not feel like an equal partner in treating your disease. You will also have all kinds of unnecessary anxieties about the course of treatment, including test results.
I understand how you would be concerned about that test in particular so if I were you, I would call him, if you are not going to be seeing him soon, and ask about those results and ask for a more explicit explanation. Or, get a second opinion from a cardiologist that you trust. If you do not know one, after speaking to this doctor, ask him if he thinks a visit to a cardiologist is a good idea and if so, ask him for a referral.
Our disease thrives on stress. If you allow the lack of an explanation to stress you, you are putting yourself in a position of being more stressed. That is the last thing you need. Take care of yourself and stand up for yourself at the same time. Demand to have the results explained. Be forceful but appropriate. You will get the information and not be so stressed and therefore will be benefitting yourself.
Good luck and feel better. Remember tests are not always right. Don't be upset. It is probably just as your doctor said from the beginning - a big nothing to worry about. Just get what you need to stop stressing and get on with taking care of yourself.
Smurfette

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#11 shennen0820

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Posted 07 November 2008 - 04:36 PM

I was recently diagnosed also...the literature I have found suggests getting baseline testing...so if I were you I would push for the ct scan. This way you have a baseline...meaning from year to year when you have a ct scan they can compare it to this one to see if there are changes. I have found the John Hopkins website extremely helpful with this diagnosis. It has a lot of really good explained information. See Johns Hopkins Scleroderma Center.
Shennen

#12 Margaret

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Posted 08 November 2008 - 04:19 PM

Hi Ana ,

My son was is taking Zantac twice a day (breakfast & suppertime) and his primary care physician just added Prilosec for him to take at bedtime because he has been complaining about his throat being sore and his 'stomach on fire.' You are new to the group, but my son is 20 years old with DS/Autism, so it is a bit difficult trying to figure out just what exactly is going on. His primary care physician wants an endoscopy to be set up. His blood work came back negative for the most common stomach ulcer bacteria...helio?.....that is good!!! He has been on GERD meds since he was 10 years old......something that is common in DS kids.

Take care, Everyone.
Margaret

#13 canon

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Posted 09 November 2008 - 05:59 PM

Ana,

Sorry I missed your post till now and sorry you are going through so much. Have been out of sorts myself. The hands don't work well enough to type sometimes.

Doctors think out loud sometimes and they should really watch that. It adds to any confusion or doubts we may have.

With gentle thoughts.

Judy
A happy heart is good medicine.