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About monika

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  1. Hi there I've tried several creams and lotions, and I came across one marketed for pregnant women to use on stretch marks, but if it works for other things :D I don't know if it is available where you live (I'm in Australia) but I found it to be a really good lotion which soothed my itching and really made a dent into the dryness. PM me if you would like the brand name. Monika.
  2. Hi James I'm 34 too and was diagnosed with limited scleroderma (initially) two years ago. At that time I didn't really take it all in until last year when things started to go downhill with a hypertensive renal crisis occurring (now diagnosed with systemic scleroderma). Yep things are tough to start with, but you learn to love the little achievements you make with great passion. Determination my friend is the best thing you can have on your side. Determination and positive thinking gets you a very long way. Like you I have two beautiful cats who are like my children. Don't know where I'd be without them. I may not be a regular poster on this website, but whenever I do log on, you can always guarantee to get a smile from the posts. This forum is a wealth of information and you realize you are not alone. Doctors speak a lot of jargon which can be very confusing and frightening- this is a great place to sound out your thoughts and get a better understanding of what is going on. Keep up your spirits. Monika. :D
  3. Hi Helen I'm on methotrexate as well as cellcept. It is a pretty low dose 20mg/week but still I find I feel yukko the next day and sometimes the day after too. I do find cuts and sores tend to heal a lot slower and I have regular blood tests to keep an eye on liver function etc. Cheers Monika.
  4. Hi Erin I've got issues with anaemia as well. Mine is to do with my kidney failure. Apparantly the kidney when not functioning correctly fails to produce a hormone called erythropoeitin which is the hormone that produces red blood cells. So now I have give myself an injection every week with the erythropoeitin to boost red blood cell production. I do feel a little better for it (i've only been on it for about a month). Cheers Monika.
  5. Hi Jenny I was 32 when I was diagnosed (now am 34). I'm methotrexate and cellcept, in Australia they seem to be more inclined for this type of treatment. But I'm open to alternative treatments, and like you am on the search for answers and a cure (as everyone else is :) ). Have heard IVIg works with some patients with their symptoms, but personally I haven't tried it. Welcome to the forum, hope you find it as useful and supportive as I do. Keep strong. Monika.
  6. Hi Sherrill Yes, thats the one, I actually came across its mention on an MS website forum, which had some members with MS being treated there, and made mention of patients with Scl. But as you mentioned, you don't know who has posted those messages, so yes I need to be very wary. But the scientist in me (I'm a chemist by profession) keeps on looking. If you PM me the link, to be sure we have the same one. Thanks Monika. :D
  7. Hi Hope I'm sorry to hear that your Mom has been diagnose with Scl. Well I'm 34 and was diagnosed when I was 32, I don't have children yet. All the literature you read is quite depressing, but then when you get a good specialist who knows their stuff, the realistic picture is on a brighter note. 10 years? I'm a fighter and I plan on being around a lot longer than that. Yes you have good and bad days, but you have to keep positive, and I think be open to many different ideas and theories. I'm with the others, I'd be looking for another specialist - one who is positive. This forum is wonderful and you'll find it has a wealth of information and support. Keep your hope up. Monika.
  8. Hi Pamela The name of the switzerland clinic is the Paracelcus clinic and is located in Lustmuhle. It is headed by a Dr. Rau. Cheers Monika.
  9. Hi All I am (as I can imagine you all are) am on the constant lookout for new ideas and places for treatment. During my research I came across a clinic in switzerland which specialises in autoimmune diseases. I know you have to be very wary of places that claim such things. Has anyone heard of it, or know someone who has been there? Keeping up hope Monika.
  10. Hi Liz I'm a neighbouring Aussie, so not too far away. I've got systemic scleroderma and was only diagnosed in Oct 2005. It took my doctors a while to diagnose me too at 33. My moto is to keep fighting and am always on the look out for treatments and techniques. I believe for every disease there is a cure, we just have to find it. Hang in there Monika.
  11. Hi Celia Maybe I have understood the whole immuno supressant theory. I would have thought that because we are supressing our immune systems we would be more prone to catching colds, flus and viruses? I've been told by my doctors to try and avoid people who are sick to minimise the risk of catching. Hope you are feeling better. Monika.
  12. Hi Has anyone had problems with their skin breaking out? I from time to time get a horrible breakout which almost is rash-like in appearance particularly concentrated around my chin/mouth area. It starts of being very dry and the skin flakes and then goes into the rash appearance. I'm on methotrexate and mycophenolate, would these immunosupressants be causing these? If anyone has experience with this, any suggestions on how to calm it down would be most appreciated. :unsure: Monika.
  13. Hi Celia I'm from WA. I saw a private rhumie initially, but have been disillusioned with him. He gave me info e.g. not to worry about the critical effects of scleroderma as they don't tend to occur so early in the picture - until my renal crisis occured, whoops too late. I now have been transferred to a public hospital immunologist and he is wonderful -open to all my suggestions and disccussions (most specialists I find don't really humour you undertaking research etc.). Hope you fare well with your rhumies. Monika.
  14. Hi Ced I'm no expert, and a new member to this forum. I've had a few echo's done as I am part of a study over in WA. I haven't had any issues such as that, but I believe that if it were a major issue the cardiologist would have referred you immediately. I tend to find that all my specialists (immuno and renal) confer together and discuss things behind the scenes. I know its not much help but I hope a little more comforting :) Monika.
  15. Just wanted to say a hello to you all - I am a new Australian member. A quick run down of my Sclero background: I was diagnosed with scleroderma in Oct 05, with just a diagnosis of 'scleroderma' i.e. no rundown of the different categories. In Aug 06 I had a renal crisis which came on very suddenly, so my specialists have now ammended the diagnosis to systemic Scl, after which I was told 'oh but we thought it was just limited' :mellow: . I have been researching this disease since diagnosis, but as I can imagine you all have done, found there are many theories but nothing really conclusive regarding treatments and cures. But I am open to all thoughts be it western medicence or alternative - which is unusual for a chemist/scientist (thats me :D ). I am looking forward to being an active member of this forum and sharing lots of ideas and thoughts. Monika.
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