Janene

My name is Janene.

I'm twenty-eight years old, from Australia. I have always been fit, healthy and strong, until now. I have scleroderma. One day in November, 1995, I happened to look down at my ankle and realised it was swollen. Then my legs swelled up. I went to a few doctors who managed to diagnose me with a range of different diseases, from kidney failure to acute inflammatory arthritis. Eventually my ANA gave them a clue - it was 1:2560. They suspected undifferentiated mixed connective tissue disease/scleroderma.

I'm employed in a laboratory where I analyse samples from people with these diseases every day, so I was not ignorant of what the diagnosis meant. I knew in theory how these patients were affected, but it was so different when it happened to me.

I was appointed a rheumatologist. He put me on 7.5 mg of prednisone per day and sent me home. By this time, my feet and lower legs were swollen, my hands were going hard and my fingers were curling up. My hips and knees hurt terribly and I was having difficulty in moving around. Family and friends were worried and caring. I continued to go to work and I think I managed to hide most of my difficulties because I thought of work as a place to try and be normal.

Prednisone wasn't helping a great deal, so penicillamine was prescribed as well. Because of the horrible potential side effects of penicillamine I had to monitor my blood counts. I felt even worse. My hands were close to bursting point and the itching drove me crazy. I couldn't sleep because of the itching and the pain in my joints.

My mum, being an Internet junkie, was contacted by a founder of the Road Back Foundation. She was given details of a treatment with antibiotics which was carried out by Dr. Thomas MacPherson Brown. It made sense. Nothing else promised a cure, only suppression of the symptoms, which wasn't working anyway. The antibiotic treatment was simple, inexpensive and certainly sounded a better option than penicillamine or the other drugs in common use.

So I started on the antibiotic treatment.

At this point I've been on the antibiotic treatment for nearly two months and I know that the treatment is long term. I've noticed small improvements already. My hip joints hurt less and it's easier to walk. Instead of the facial rashes that plagued me, my skin is clear and my colour has returned. But, most importantly, I now know of so many people who have returned to health through this treatment that it has given me hope. It is very depressing to know that you have a disease that modern medicine claims cannot be cured.

I will keep this page updated to let everybody know what is happening as I continue to improve. My boyfriend Darren has supported and comforted me every day and still makes me feel beautiful even though at times I felt ugly. Even though I complain and cry sometimes, he still smiles and makes me feel happy.

I am forever grateful to the Road Back Foundation, to the people I have never met but who have made such a difference to my life. To them I say "Thank you".

UPDATE October 31st, 1996

It's now been four months since I started antibiotic treatment.

I have far less joint pain. I used to wake in the night and be in so much pain that I couldn't sleep at all. Now I wake and feel some pain but then go back to sleep again. Last weekend I got up on my horse and rode him. My family remind me that three months ago I couldn't get up from my chair.

I have been warm for a long time now, and don't feel that terrible internal chill from the disease as long as I take my minocycline. About a month ago, I developed a tiny red rash and was worried, unnecessarily, that it might be a reaction to the antibiotics. So I stopped taking the minocycline for a few days and that awful cold feeling came back immediately.

My hands are always warm now and, if I pinch my fingers, the colour comes back straight away. Dr. Brown's notes on one of his patients said that was a very good sign. They are still bent over at the fingertips and I am starting to do finger exercises to encourage them to straighten. Some areas of skin on the back of my hands are softer than before.

On the other hand, I have developed more patches of hard skin. This worried me until some of the other patients on this therapy sent messages that they had experienced worsening of some symptoms while seeing improvement in others, just like me. The patient network is extremely helpful. As this treatment takes a long time, and sometimes you get worse before you get better, it's good to be able to get support from people who have already been through it.

In myself, I feel a great deal better. I am getting on with my life and some days, I even find that I forget that I am ill.

I intend staying on this therapy.
UPDATE June 25th, 1997

Eleven months has now gone by since I started antibiotic therapy. I had a promotion at work and am coping with my life and my job pretty well. I have three months' long service leave due shortly, which I am looking forward to as my first long holiday in years and the opportunity to rest and relax.

When I first started the clindamycin injections, I had a regular pattern of pain and depression a day or two later as the antigen travelled around my body. For the last three months I've had no reaction to the injections at all, which is a very good sign. There is not enough infection left in my body to stir up sufficient antigen to provoke a reaction.

About two months ago my joint pain decreased to the point where I felt I no longer needed the 5mg of prednisone that I was taking. So I tapered off slowly with no side effects and no increase in pain. I am now only on the antibiotics and the vitamin supplements, acidophilus/bifidus etc. with no other drugs at all. It is winter here and the cold weather has brought me more stiffness than in the warmer weather, but I feel much better without the prednisone. I had been having small memory lapses which worried me, but on discontinuing prednisone my memory came back as sharp as it was before. My legs swelled slightly shortly after discontinuing prednisone, but that is now much better. I realise now that my face had become round while on prednisone, because I now look the way I used to and my face is its normal shape.

The thick skin has spread over many areas of my body - it is darker in colour and slightly shiny. Recently the tops of my arms have begun softening and the first joints in my hands are loosening, with the fingers appearing to be straighter. My fingers are still curled over and some of them are still very inflamed and hurt if I touch them. My finger ulcers haven't gone completely but are no longer open sores. I sleep and eat well.

I have recently paid more attention to diet modifications - hardly any sugar, eight glasses of water every day, plenty of fresh vegetables and fruit, no fatty junk food. It was after I started the diet modifications that my upper arms started softening and I've also noticed other improvements, such as not having low blood sugar episodes.

I walk long distances to and from work and, with my holidays coming up, I am now going to start to swim and do more exercise to build up my muscles and general strength and to further free up my joints.

This therapy takes a long time, and it also takes a lot of patience. Progress is very slow with many ups and downs and my family often have to remind me of how far I've come since July of last year. The only thing that really frightens me is what would have happened to me if we hadn't found this antibiotic therapy. I'm profoundly grateful that we did.

Janene.

You can reach me at: cadlard@chariot.net.au

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