My name is Sujatha. I am thirty-six years old and hail from Bangalore in the Southern State of Karnataka in India. I am ailing from diffuse systemic sclerosis and I thought that sharing my experience would be handy to those going through the same phase in life.
It all started out in January 1992 when the fingers of my hand used to turn blue occasionally. I consulted a reputed physician in Bangalore and I was told that this symptom was called Raynaud's phenomenon. I was advised that a cervical spine x-ray showed slight constriction in blood supply originating from my right collar bone. I was told to consider surgery but I opted out. I was not put on any medication but was advised to avoid extreme cold conditions.
In July 1992, I observed a slight swelling in the neck region. Routine thyroid tests like T3,T4 and TSH were done. No conclusions were reached. The thyroid was more or less functioning normally.
We moved over to Muscat towards the end of 1992. I was not having any major problems as far as diffuse systemic sclerosis was concerned. However the Raynaud's problem still persisted. We moved to Dubai in 1994 and by mid 1995 I started developing frequent joint pains. I was advised to exercise regularly. I was also put on Naproxen 250 mg. (thrice daily) for a period of 4 weeks. This reduced the joint pain.
By mid 1996 my fingers were swollen, my face was tight, my nose was pinched and my lips were drawn. Raynaud's was now affecting my hands and feet. This was when I was diagnosed to be suffering from diffuse systemic sclerosis. I was put on Betnesol Forte 2 mg. twice daily for one year along with Nifedipine 10 mg. (retard) twice daily.
By December 1996, the Betnesol Forte however had some severe undesirable side effects. My face started swelling, I gained a lot of weight and started feeling a kind of pressure in my eyes. I tapered off on Betnesol and discontinued it. However I continued Nifedipine and added Trental 400 mg. thrice daily to my routine medication.
By August of 1997, there was sporadic pitting of my finger tips owing to reduced blood circulation to the nerve endings. I was advised to regularly massage my hands and feet with olive oil and wear warm clothing. I was also told to add cyclophosphamide 50 mg. (once daily) and colchicine (thrice daily) to the other Trental and Nifedipine that I was already on.
By 1998 October, we had moved to Kuwait where I was being seen by doctors in the rheumatology department of a government hospital. I was told to step up the cyclophosphamide to 100 mg. (once daily) plus D-Pencillamine 500 mg. (once daily) along with Trental and Nifedipine. I was also advised to have regular blood tests and PFT (Pulmonary Function Tests) tests. However, the cyclophosphamide medication gave me all sorts of problems. I suffered from acute nausea throughout the day and could hardly eat anything. I started losing hair on my head and my menstrual cycles totally stopped. I was told that I had gone into premature menopause on account of the side effects of cyclophosphamide, which incidentally were never told to me in the first place.
Now I had to deal with yet another problem, in addition to diffuse systemic sclerosis. Owing to premature menopause, I started getting regular hot flashes. In fact it continues to this day and is one of the most daunting and depressing of all the symptoms. In fact, at times I get the feeling that this has precedence over all other scleroderma-related problems.
Because of my low WBC (white blood cells) count, the cyclophosphamide and D-Pencillamine medication were stopped totally.
We returned to India in November 2000. Unfortunately I hurt my left toe in one of the social gatherings. I had to take an array of medication ranging from pulse therapy (cyclophosphamide in IV form), tryptomer, and various pain killers like Nimulid. I was feeling the wound area acutely itching because of the local anesthetic, Xylocaine gel, which the doctor had prescribed to relieve me of the pain.
Nothing worked eventually to cure my toe. I simply stopped all medication (apart from Trental and Nifedipine) and stopped pouring water over my toe while having a bath. Simultaneously I started consulting a homeopath doctor. Ever since then, the toe, although not totally healed, is at least dry now. The pain still persists. Now, one of the toes in my right foot has started exhibiting similar symptoms to their left counterpart!
The pitting or ulceration on the fingers of my hands is slightly more now. I totally avoid chopping vegetables now and get my maid to do it. Though there are times that I need to do it, I just ensure that I do it carefully.
I am presently on Nifedipine, Calcium, and Evista to care for both my DSS as well as prevent osteoporosis in the future. I also regularly massage my hands and feet with Vaseline Intensive Care lotion (with Aloe Vera). This keeps my hands and feet free from feeling so dry.
I continue to see my rheumatologist and homeopath regularly. I hope and pray that I at least continue to stay the way I am and that I will be in a position to continue with my routine chores.
Story posted 3-26-02
Story Artist: Shelley Ensz
Story Editor: Kishori Mundargi
The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.
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