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My Story with CREST and NEED your feedback

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#1 Abdul



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Posted 03 November 2009 - 02:08 AM

I was diagnosed with Scleroderma (CREST) back in March on this year. It started by getting darker skin all over my body. Then I had tightness on my forearm, face, stomach, legs and also swollen fingers. Then I started to lose my hair on my arms, head and legs and my fingers turn white sometimes. At that stage I started to lose weight ( I was 104 kg). I really did not bother to see a doctor as I was happy seeing the weight go off (in March I was 81 kg). Then I had difficulty swallowing food and I had to drink water with every food I eat.

At that time I decided to see a doctor and it took about 2 months before I was diagnosed March 21, 2009 with CREST. The only positive test was ANA (was +4) which the doctor said is the highest level (here we do not have ANA numbers as I saw in the all articles I read about the disease). The doctor prescribed medications for me. After taking the medicine for 3 weeks I started to get fatigue when I walk or lift stuff (I have to rest when I walk up the stairs or walk for 40 meters). The doctors also told me that there is no treatment.

I then decided to go for alternative therapy while continuing my medication. After 3 months, I started to feel better, the fatigue is gone since then. The hair has regrown in my arm, legs and little on my head. In June, I went for another check up and everything was OK except ANA (+3 this time). I saw another doctor back in September and he recommended stopping two of the medications I was on, since he saw improvement but he confirmed Scleroderma.

Since September I am seeing huge improvement. To be honest with you I attribute my improvement to the alternative therapy not the medications. I now look like how I normally looked like 3 years ago. The skin now is back to its normal color (white), the tightness is gone, the hair is back, the difficulty of swallowing is gone.

The question I have is: when I can say that I have recovered from the disease (if someone looks at me he/she will see normal person). I have never looked as good as I look now. I am planning to do another check up and I hope that the ANA test is normal (if that is the case can I say that the other therapy works since I will stop taking any medication).

I hope if someone can answer my question and also does the symptom of this disease come back again.

I know my story is long and really appreciate your understanding since I really did not edit it and I am sure it has spelling and grammar issues as English is not my first language.


#2 Jeannie McClelland

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Posted 03 November 2009 - 03:17 AM

Hi Abul,

It is my understanding that the disease symptoms may improve, but the disease itself never goes away and there is no cure. I am not a doctor, but I would think it possible that the various medications are responsible for the improvement. I think that in English we would call it 'being in remission'.

There are many reports of improvement of symptoms, some due to a good response to medication, and some occurring spontaneously. There are equally as many reports of the improvement lasting 'forever' and I hope that is what happens in your case. However the disease can also become active again and not only old symptoms come back, but the patient may experience new symptoms too.

I would think it important to have regular check-ups with your doctors, to tell them exactly what medication you are taking (or not taking), and also about any alternative therapy you are using.

Best wishes for your continued good health,
Jeannie McClelland
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International Scleroderma Network

#3 Shelley Ensz

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Posted 05 November 2009 - 05:40 AM

Welcome to Sclero Forums, Abdul! I'm sorry that you have scleroderma but I am delighted that you are doing so much better now.

Please keep in mind that I have no medical training at all, and verify or disprove everything I say with a reliable medical source.

As I understand it, there is a natural waxing and waning that occurs in scleroderma, which means that the disease often takes a natural course of getting worse, and then better, even without any treatment at all. Sometimes things return entirely to normal, and sometimes there is a respite and then it progresses again.

It is this very odd and unpredictable course of the disease -- plus a strong tendency for scleroderma to improve even with placebos -- that makes it extremely difficult to test proposed treatments for scleroderma. In the early stages of clinical trials nearly everything looks positive; it is only when they get to the large scale clinical trials and are certain they are on the brink of a treatment or cure as so many patients are doing so well -- that when they unblind the study they find patients equally improved both with and without treatment!

It also argues a bit for the idea that as patients, if we take anything we think might help, we might be predisposed to having our illness go into a bit of remission. I translate this to mean that being hopeful is helpful to us, somehow, perhaps by it relaxing us enough to let some natural healing take place on its own. But then again, I've seen very hopeful and relaxed people whose scleroderma continued to worsen, so I wouldn't lay it entirely at the feet of a positive attitude, either. Obviously there are still poorly understood physical forces at play, with the underlying cause of the majority of cases of scleroderma still either unknown or uncertain.

In any event, if I were you, I'd rejoice and give thanks every day for the improvement. Only a scleroderma expert could pronounce you "cured" and that is a somewhat dangerous thing if it causes you to let your guard down, as sometimes silent organ damage is accruing in the background. So no matter what, you want to always have any new symptoms examined by a doctor and always get a yearly physical exam, so that you can catch new developments early on, when they are most likely at a treatable stage.

Otherwise, too much optimism, with no reality check, could lead you to ignore symptoms, skip physical exams, and then perhaps get caught off-guard by troublesome complications.

It's a very fine balancing act, but one I am sure you will manage gracefully.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
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#4 debonair susie

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Posted 06 November 2009 - 06:51 AM

I would like to welcome you to the forum, Abdul.

I am very pleased to read that your symptoms have "settled down", so to speak.
However, please know that I only wish you the best with your health. Yet, I must
agree with Shelley and Jeannie, on the topic of "cure".
There are many of us who have experienced what you presently are....for me, though,
it took quite some time (8 years), before I started feeling any better.
As Shelley also pointed out, while some of my symptoms seemed to improve, I lost ground
in other ways. New symptoms appeared, setting me back, in "other directions".

It is SO important to keep regular doctor visits, as we tend to become more lax, which can put
us at a great disadvantage for staying on top of signs we may not even realize, as Shelley
also stated.

As much as we hope for cures, it's so important a patient does not "take charge" of their
medications by removing them. There can be serious health repercussions without consulting their doctor first.

It's so wonderful to feel well, but that has a tendency of changing, as many of us know, here on the forum.

We are so glad you joined the forum and we hope to hear from you OFTEN, letting us know how you are doing!
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)