I am fifty-one years old and in May 2011 my diagnosis of systemic sclerosis (scleroderma) was confirmed. I am studying for horse veterinarian and am in my last year.
I was having a number of symptoms such as Raynaud syndrome, smaller mouth, puffy fingers, coughing in the winter under the shower, couldn't drink just before lying down (then it would come out again as soon as I lied down), pain in my finger joints and sometimes it felt as if my fingers were locked, carpal tunnel syndrome, difficulty in remembering and concentration difficulties, dry mouth and eyes, too many extra dental fillings, feeling sick after eating fatty meals instead of healthy green meals, depigmentation spots on my arms and hands in combination with extra freckles, and perhaps most important I was very tired all day and extra sleeping did not help.
I did not go to the GP because any of these complaints, but I woke up when I couldn't see the thin lining on the back of my hands anymore (they got smooth). We learned that if you have that on a dog's nose (the only bit of skin we see as vets) in combination with depigmentation, that it was strongly indicative for Systemic Lupus Erythematosis (SLE). So then I searched the internet for symptoms of Human SLE. These symptoms did not agree with mine, but there were several other autoimmune disease listed, and the symptoms of SSc did agree.
So then I went to the hospital to have a blood test to see if I had systemic sclerosis (SSc, scleroderma). And yes, anti-topoisomerase I antibodies were found.
So I went to the university clinic in Genth, Belgium, where they are specialized in SSc, to see in what state my organs were at that time and for the start of my treatment. A nail-fold videocapillairoscopy (confirmation of SSc), HR-CT scan of my lungs (ground glass opacities at the basal parts), X-rays of lungs and hands, lung function tests (volume okay, but already less gas exchange), a 6 minute walk test (distance okay and oxygen saturation okay in my fingers). I wore a Holter monitor and had atrial fibrillation twice that week). My echocardiogram showed no deviations. And of course I also had conversations with a cardiologist, pulmonologist and rheumatologist.
My treatment was started with methotrexate (MTX) at 15 mg ones a week plus follic acid (1 mg a day, but not 24 hours before or after the MTX); acetylsalisylacid (80 mg per day; and Nifedipine 60 mg per day. In the winter once a day I inhale corticosteroids for the inflammation in my lungs, and vitamin D (cholecalciferol 25.000 I.U. once a week).
I noticed the results of supplementing vitamin D because in just two weeks my fatigue was totally gone!
The results of the high dose Nifedipine were quickly noticeable: I had no more Raynaud attacks (but also because of no more exposure to cold); my memory and concentration difficulties were gone, because I had more blood to the brain again.
I noticed the results of methotrexate (MTX) after three months, when the pain in my finger joints diminished and are nil now and my fingers aren't locked anymore.
Furthermore I take extra care of myself with the following:
Now it is March, almost a year later, and my condition has stayed stable. I am very happy that, with all my daily adjustments, I stay stable.
I hope this situation will last for a long time so that I can start working as a normal horse veterinarian within a few months. My rheumatologist says that changing my lifestyle is probably more than 50% responsible for the good result in my case, and that the medicines are doing the rest.
I personally think that, next to changing my lifestyle, the vitamin D (cholecalciferol) and the double dose of Nifedipine are responsible for my wellbeing, compared to a year ago.
Email: [email protected]
Story posted 03-19-12 SLE
Story artist: Nolan LaTourelle
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