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Everything posted by Kiwi

  1. Hi all The doctors want to start me on Azathioprine long term as my lungs are worsening again. I have had cyclophosphamide in the past which stabilized them for a while but knocked me around a bit. Which is the best option? Kiwi
  2. Eos, what did you have surgery for ? Thanks, Kiwi
  3. Hi Thanks for your replies. My hands are badly clawed over at the PIP joint (middle of finger) and frozen in the joint that is on the hand, and is still getting worse. I have been googling to find surgeons who have operated on Scleroderma hands and there seems to be someone in New York with experience. I am aware that some don't agree with surgery however there is so little movement that I feel it is worth a try! New York sounds expensive though! Thanks
  4. Hi everyone, My hands are still getting worse after 5 years and now my arms don't even straighten. I have been investigating plastic surgeons here in New Zealand who specialise in complex hand surgery and have found one guy who has operated on one finger of someone with Scleroderma. Has anyone had their fingers operated on? I'm aware that New Zealand is a small country so am hoping to find info on surgeons in other countries as well. Does anyone know of any or has had any operations on their fingers/hands? Many thanks, Kiwi
  5. Hi Mammagigi Thanks for your reply. I am very hesitant to go down the IV antibiotic track, but if I can't keep the next infection at bay then I might have to. That's if they can get a needle into my tough arm! What is IV Immunoglobin? I now take probiotics (that's good bacteria) on a permanent basis so I'm monitoring that at the moment. Antibiotics strip so much from our systems. Many Thanks,
  6. Thank you for your reply Shelley. I do try to wear the splints at night, usually one at a time though as I find it a real pain if I need a drink or to go to the toilet. One is a molded plastic with soft velcro straps and the other ones are a molded putty that plastic rests against and is strapped on. One goes to the wrist and the other two are just the palm. What do the daytime splints look like? And how do you function with them? I spend about 1/2 hour a day trying to stretch fingers and go to 2 stretch classes a week and 1 massage. Are there any pictures of splints on the site?
  7. Hi everyone Thank you for your replies. It would seem that I have one of the worse cases people have seen over here.... my skin tightening the worst in my hands, arms and thighs. My fingers are frozen at right angles and very stiff which makes it very hard to do anything really. I feel a bit sad that not much attention was really paid to my hands until now (4 years with scleroderma now) and fear it is too late. In saying that my elbows don't straighten anymore either so perhaps there was just no stopping it. I can only hope that the skin will soften a bit as can sometimes happen an
  8. Hi there, Can anyone give advice on exercises to stretch out the fingers. I wear uncomfortable splints to bed and use a "power web" elastic contraption to stretch them. I also try to squeeze grip matting under the fingers while sitting to try and give them a stretch. I simply can't keep up. Does anyone have any ideas to help straighten fingers? Thanks,
  9. Hi Sweet, So sorry for such a late reply and yes it has been a long time. I have managed to give up smoking, find an amazing guy and start a business with him so been a bit busy! I am living on the Coromandel Peninsular in the north island. I managed to stave off another full blown infection with more antibiotics and am now taking probiotics (good bacteria) on an ongoing basis. Next step dermatologist and ulcer specialist. Still can't get rid of the ulcers after giving up smoking and everything! What brings you to NZ? Cheers,
  10. Hi there I seem to be constantly fighting infection popping up in my wrists, knuckles and elbows. I take antibiotics (have tried many different brands)but they don't seem to work anymore. My body doesn't seem to absorb properly. Does anyone know how to help the body absorb better? Or know about infection? Thanks, Kiwi
  11. Hi there Not much of a funny subject in my opinion! My personal experience is very similar - overnight I started having problems but lookng back I was constipated as a child as well so go figure. The leakage in my opinion is the muscles trying to work out the stool - which is difficult if the walls/muscles are thicker. What works for me (and you have to keep a close eye on it) is a daily spoon of ground linseed on my cereal (flaxseed). Also if I get a build up I reinforce it with a natural herbal tea available here in NZ. Good luck! Keep it natural and avoid laxatives I say!
  12. Thank you all for your replies.. I'm afraid I have some sad news.. I had my Follicle Stimulating Hormone test (FSH) as I "sort of" got a period and so on the 6th day (supposed to be the third) which was a few days after the "period" had stopped I got the blood test and my result is 39.1. Now I don't know a lot but I know that's bad!!! Looks like I can forget having children... :( Does anyone know about FSH?
  13. Thank you for your replies - Lisa, yours was a bit scary! I have so many questions regarding my physical ability to have children - for starters I think the chemotherapy I had has put me into early menopause, but I also question my long term ability to care for myself let alone a child. In saying that there is a feeling of missing out if I don't. New Zealand is such a small country so it's difficult to find specialists who know much about Scleroderma. All I know is that mine is still progressing and the skin is getting tighter.... Here's hoping... Thanks again, Kiwi
  14. Hello, I'm curious to hear from any women who have been able to have children that have severe skin involvement ie. tight skin on arms and legs and curled over fingers. I am 36 years old and am in two minds as to whether I can have children for starters... and if I can then could I pass on anything or even be able to take care of the baby? My hands have very limited movement in them now after 4 years with scleroderma. Hoping to hear some positive feedback!
  15. I have had ulcers for years and it's not since giving up smoking and taking Cialis they've mostly cleared up. Unfortunately it's expensive in NZ!!
  16. Kiwi


    Thank you for all your replies - I guess it's just trial and error. I had about 5 doses of antibiotics to try and clear up infection in my finger ulcers so maybe my stomach is out of whack - must remember to take probiotic tab tonight... Is it just me or does it seem like one thing after another! Thanks for all the replies, Kiwi
  17. Not the best topic to bring up but I'm wondering if I have IBS or some sort of problem in the piping! I've been getting horrible stomach cramping - then either need to go to the loo, expel gas or just grin and bear it. Sometimes the cramping has me in a full body sweat and sometimes I'm on and off the loo 4 times in a morning... going bit by bit. Does anyone else have this issue? It seems to be staying longer each time now instead of just once every month or so in the middle of the night. Is it just a case of lots of water, fruit and vegies? Ta, Kiwi
  18. Hi there, I know we are all different and me being a 36 year old (single) girl who has been through chemo with this condition is somewhat disenchanted that I will ever have kids due to my egg numbers being reduced. In saying that I will probably see if I have any eggs left and in what condition they are..... if I ever meet a man! My question is: how does the belly cope with the swelling? Mine is quite tight. And how does one get down on the ground for a toddler and change nappies and fiddly little buttons on babies when their hands are immobile?? Ever hopeful, Kiwi
  19. Hi all I don't have "reflux" as such... sometimes it's a little hard to swallow if I haven't chewed properly and sometimes I need to burp and liquid comes up instead. I have also been getting a burning in my chest sometimes. Can anyone recommend foods to eat or not eat to keep this at a minimum? Thanks, Megan
  20. Kelly - good luck I have been exactly where you're at. They reassured me as well and who knows - miracles happen all the time right? It would be interesting to have this conversation in 5 years time! Peanut - wow, you are a trooper!
  21. Hi Sadie, I have diffuse also but fortunatley only a little lung involvement. My biggest problem is tight skin, lack of general mobility and ulcers !!!! I'm sorry to hear of your additional organ involvement. What do you do to pass your time? SpaceysChick (love the name) - when did you start noticing a "plateau" or even a remission to your condition? I'm 35 and have had for 3 years now. Still progressing but slower than first 2 years. Great to hear some positive! Love Kiwi
  22. Yes mine are curled over too - and as a result I don't work. Do you work and if you do, what kind of work do you do? I find just the simplest functions hard as you all must as well. Hopefully over time our skin will soften and our hands will straighten. That is my hope....
  23. Thank you all for your kind words. I still haven't done the FSH test - I'm waiting till I get a period to do it as this is when it's most accurate. unfortunately I could be waiting a while. I'm pretty sure I'm getting some major hot flushes as well so I'm not actually that hopeful.... Still trying to get over my Nana dying and am trying to get motivated but I just can't be bothered doing anything! I'm just not interested in finding work or hobbies. It is such a horrible feeling to watch youir condition get worse. Legs are starting to harden. Thought after 3 years it might plateau...
  24. I don't usually post much, although I do read other peoples but lately things seem like they just couldn't get any worse - I'm sorry for complaining but I really need help to get through the days at the moment. My father had a heartattack recently and then two days after my nana did too. She has since died and she was my rock in my life, I was very close to her. We have just cremated her and have had to sort out all of her belongings etc which was very emotional. I have also had a lot of trouble with not getting my periods for a couple of years now - which I thought was due to taking th
  25. I was very shocked to hear about Sherrill. She was one of the first to write to me and it was a comfort knowing that she was in NZ also. I will miss her ..
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