I am Sajjad, a 22 year male currently living in Brisbane, Australia on international student visa originally from Pakistan. I am being diagnosed with Limited Scleroderma for last 2 years but the skin tightening problem is been there for more than 3 years. I will share my story from beginning and I hope that I will be able to get some advice, learn from experiences of other members and will be able to share some advice with members here. My problem started in late teenage when I felt that left side of my face was getting bit hard and I also lost hairs on my back. After few days I also started losing hairs on the hard skin of face.
I consulted dermatologist there in Pakistan, did some blood testing for scleroderma but found nothing. It was strange that I was getting hard skin and there was no sign of scleroderma in my reports. Later one doctor said to me maybe it was because it was very initial stage of your problem. As it was not diagnosed, I was given treatment for Alopecia (Hair loss), I even got the injections for hair recovery on my face but was not recovering and it was becoming worst day by day. After struggling with alopecia treatment I was finally diagnosed with limited Scleroderma in blood tests by one lady dermatologist. From January 2011 till now I am only using one cream on my face and nothing else, its because I was given a lot heavy doses before so the doctor put me on mild treatment.
I also consulted a rheumatologist in Pakistan and she suggested me to take Methotrexate, but I have not taken any methotrexate till now. The reasons behind not taking methotrexate is 1) My uncle advised me being a doctor not to take it at this stage 2) I am improving slowly with only medicine methylprednisolone aceponate cream. My specialist said to be on this cream till I get any more symptoms and luckily I have not got any new symptoms for last 2 years and I am improving on very slow percentage. My skin is getting a little softer on face and I am also recovering hairs on that part of face. Same thing a dermatologist in Brisbane told me that you can choose not to go on methotrexate treatment if you feel that you are improving.
I was very worried when it happened to me, I lost my confidence as it was my young age but I had a lot of support from my family and friends and its because of their support I am fighting with this problem. I believe that every human has capability to do anything and I am still up with this spirit because I am still young and I have to do many things in future so why should I worried with just this problem. I would really appreciate if someone can share any home remedies or any exercise they have done which can improve mobility of skin or anything that can be useful to me. I also hope that I will learn and share many things on this blog.
Posted 31 March 2013 - 06:46 AM
Posted 31 March 2013 - 09:05 PM
What a wonderful uplifting story you have. So pleased that you felt you could share it with us.
It seems that you have had such great support from your family in this journey. I am pleased to hear that your skin seems to be softening and you have not needed to take methotrexate. Very good.
I see you live in Brisbane. At the moment Scleroderma Queensland are preparing for a Seminar and this information will be on their website. You can also contact scleroderma Australia on www.sclerodermaaustralia.com.au for further information. They would be able to send to you information Booklets and other literature.
You don't say how old you are, but as you are a student I think you would be quite young. I wonder if this skin problem is on one side of your body. Another term for your problem is morphea, and when one side of the body is affected is is called linear morphea. It can take a long time for a diagnosis to be made, this is not unusual. Until some tests come back positive it is a wait and see situation. I can understand your distress at the time.
Thank you for posting here. It was a pleasure to read your story.
Posted 01 April 2013 - 07:45 AM
Welcome to these forums!
I'm sorry to hear that you've been suffering with such unpleasant symptoms on your face and I've included a link to our medical pages on Morphea to give you some more information. Unfortunately, as Robyn has stated, it can take a long time to diagnose such a complex disease as Scleroderma, not least because it manifests itself in so many different ways and affects everyone very differently. Also blood tests, although useful, are quite often inconclusive, as it is possible to have the autoantibodies for Scleroderma and yet never develop the full blown disease and vice versa, as many of our members can testify. The diagnosis should really be made on the clinical symptoms as well.
Methotrexate is one of the medications that can be used for Morphea; as it's quite a strong drug it's obviously not something you want to be taking, unless you have to! ;) We don't recommend that our members try home remedies, but we do have a page on alternative therapies which I hope you'll find interesting and helpful. I've also included a link to Skin Fibrosis which does include a section on Physical Therapy.
I'm very pleased to hear that you're receiving help and support from your family and friends and now that you've joined our community, you will find a wealth of help and support from our members as well.
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Posted 01 April 2013 - 04:59 PM
Welcome to Sclero Forums! I'm sorry you have scleroderma and send my best wishes to you.
On top of the many friends you can make here on the forums, and our excellent medical info as well, I am sure you will find our Australian affiliate to offer great resources for information, doctor referrals, and meetings.
It is my understanding that the most recent recommendation is for the first-line treatment of morphea to be UVA1 phototherapy. Over 77% of people with morphea have a marked improvement with treatments. A pleasant thing is that the treatments involve simply standing, for a very few seconds, in a special light box. It's similar to a tanning booth, but with special light bulbs. In the U.S. it is still rather hard to find dermatology clinics that have the units, although they seem to be quickly expanding in many areas. It usually takes a course of treatments several times a week for a few months.
Anyway, welcome again to Sclero Forums!
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Posted 02 April 2013 - 11:03 PM
Thanks all of you for motivation and tips. Shelley, can you please give me some more details of UVA1 Photo therapy, I could only find the details of UVA and how it works.
I want to know how much does it cost in US? and apart from US, is this service available in any other country?
I would be very thankful if I can get more information about it.
Posted 13 April 2013 - 07:01 AM
You can find additional information about UVA1 phototherapy on our site here.
I would suggest that you contact Scleroderma Australia on www.sclerodermaaustralia.com.au to see if they know of dermatologists offering this therapy.
I am based in the UK and can advise that as at 2012 there are only 3 centres here that provide UVA1 therapy and as at 2012 there were no centres in New Zealand. I can advise that Johns Hopkins Dermatology in the US provides this therapy, I have no idea about cost, and I am sure there are other centres but I don't know of them. I am afraid you'll have to do some searching yourself.
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