Jump to content
Sclero Forums

Nia

Members
  • Content Count

    9
  • Joined

  • Last visited

About Nia

  • Rank
    Newbie
  1. Nia

    Foot padding

    I can't reach my feet to pumice. I have my podiatrist debride a corn on the ball of my foot every 6-8 weeks, not painful, extremely helpful, every 6-8 weeks. Its just scraping off a corn with a blade, not invasive. He has helped my with spongy latex insoles too. I can't get by without very spongy insoles/shoes.
  2. Nia

    Uncontrollable Itching

    I had bad itch in the first 6 years of scleroderma, tried everything. In hot weather it was worse. I liked a moisturising cream with 'cooling menthol', which gave me a little relief from the 'prickly heat rash' kind of feeling. I'm in Australia but pretty sure you can get the brand over there, its not expensive and the products are soothing, based on oatmeal for skin irritation. worth a try. You can PM me for the brand name, if you want.
  3. Nia

    Exercising ?

    Exercise has so many benefits... go for it girl. Dancing in the lounge room (and yoga) is my preference!
  4. Nia

    World Scleroderma Day

    Hi All, I am the lucky daughter of Robyn Sims, who works tirelessly to support we who have scleroderma. I've had SSD for 13 years. Mum, this is just to thank you for your endless hours of work and to encourage people to post something on their Facebook Page about World Scleroderma Day to help raise awareness to the wider community! Nia
  5. Hi all, Ive been taking oral 20mg methotrexate weekly for 12 years. My disease seemed to stabilise after about the first 5 years. I trialled stopping the methotrexate in the third year of my disease because my lung doctor thought it may have been responsible for the mild lung fibrosis I was developing. The lungs stabilised, but the skin flared badly after about 5 months so I restarted methotrexate with good results. Now I've been stable for a long time. I stopped taking methotrexate about 3 months ago and have not noted any changes. Could others share their experiences around this? Are doctors advising to stay on it indefinately, or do they trial ceasing it after a period of stability? Thanks, Nia
  6. Nia

    Frustrated and Scared

    Hello Patti, How frustrating for you to be going from one doctor to another with no specific result. Even though you say you are not looking for a diagnosis, it is important for you to have validation of your symptoms. As Jo has already mentioned it is important to see a rheumatologist who is well versed in dealing with scleroderma. She has also pointed you in the right direction in regard to further links. We certainly welcome you to our forum and I am sure you will find the support from others very helpful. In the meantime Patti, be assured that we are here for you. Warmest regards, Robyn
  7. Nia

    Winter Holidays in Australia

    Hi Jeannie, Holiday in Australia, mmm, interesting question. I have seen on the news all the snow storms you are experiencing at the moment in the Northern Hemisphere. As a child and until quite recently my family celebrated this holiday season with hot roasted meats, plum puddings etc. and sweltered in the heat. However, now we are a lot more relaxed as the weather dictates. Seafood, barbaques etc. are very popular now. But today I had a family gathering of 18 children and 18 adults (our family has grown over the years) and one minute we were in the glorious sunshine with all the children opening their presents on the green grass. Next minute there was a huge downpour and a cool change and we went inside and lit the fire!! Only in Melbourne, Australia. Quite a unique weather pattern here. I can imagine "bringing light and warmth into the dark season" would be very appropriate, but we certainly don't need that Down Under. Looking foward to keeping in touch, Stay warm at the core if you can, Robyn
  8. Thanks everyone for your warm (get it?) responses to my question. I try to have a holiday in a warm climate every winter and that seems to largely keep the ulcers at bay. I too think that dressing warmly is the only way to deal with Raynauds - prevention, as always, is better than cure. Best wishes to everyone for the holiday season. Nia.
  9. Hi all, Just checking in to see how this new forum operates. ;-) At first I wondered why I couldn't post, then I realised I had to register (using an icon near the top RH corner of the page). Registration was easy and fast. While Im here..... Ive been toying with the idea of spending substantial amounts of time in a wamer climate over the Melbourne winter. I'm a nurse, so I could potentially work in Queensland in winter and return to Melbourne for the summer. But I have heard that after a while in a warmer climate you acclimatise somewhat, so that while you get relief from Raynauds at first, the benefit reduces over time. Any Queenslanders care to comment? Hooray for summer, its 33 degrees here today :-)))))) Nia
×