Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About Timo

  • Rank
    Bronze Member

Profile Information

  • Location
  1. Thank you everyone for your replies. It really helps to know there are people who understand. In answer to some of your questions, my doctors does want to put me on an immunosuppresant. I am very lucky to have found this doctor. He is involved in a scleroderma screening program for lung problems so I'm sure he knows what he is talking about. I think we just need to look into the ribs and skin a bit more before I make such a big decision about the immunosuppresants. I have been on them before, methotrexate that time and they are the reason that my weight is so low. I did have a few side effects on them but is immunosuppresants are what's going to work I will try them. I just want to figure out whats really going on and my doctor just wants to go straight for the immunosuppresants. I have never heard of the cat scan for the lungs but when I went for the MRI they did scan me both lying on my back and my front. I will have to talk to them about the cat scan. Everything has been delayed at the moment because I am on the waiting list to get my wisdom teeth out and we want to sort that out before anything else. So I still have a bit of time to figure out what I am going to do. Thank you for your advice. I am sure it will help in my decision making Love Jess
  2. Hi all, I have a dilemma right now and I am really unsure of what to do so any advice would be much appreciated. I have recently discovered that my lungs are working at 50% but MRI's indicate no fibrosis which is good, but then why do I only have 50% lung function? My pulmonologist wants to treat me as though I have fibrosis because he believes I have it, but that we just can't see it on the MRI. I am really concerned about this for a number of reasons. Firstly, it will lower my weight which is already dangerously low, and it will also lower my immune system. Also my ribs are a definate influence on my lungs. They are horizontal instead of turning slightly downwards and about a year ago they began to curve inwards restricting my breathing. My skin is currently so tight on my chest that I can feel my lungs expanding and not having enough room. I do not want to go on a medication that will have so many negative affects if there will be no benefit and at this stage my pulmonologist hasn't given me any, but am I risking big lung problems by not going on the medication. At this stage I am considering surgery on my skin on my chest to open it up and allow myself to breathe better, but I am having a hard time getting doctors to believe me that my skin and consequently my ribs are really causing that much problem. I just don't know what to do, and I don't know how much longer I can fight with them. I am only 20 years old and doctors think they know better than me. I just have a bad feeling about this medication, and really want to look into the skin graft. What do you all think? Should I trust my gut? And do you think a skin graft could work? Thankyou all for your time. I really am lost Love Jess
  3. Hi Birdman and everyone! I have been on high doses of prednisone for about five years now. While it has helped me greatly and allowed me to finish high school (i'm 20 now) it has caused a lot of damage to my bones that I am now fighting to repair. I have osteoporosis now with the bone density of a 90yr old. It really frustrates me that in trying to treat my illness I have added more complications, but I don't think I would be anywhere near this active if it weren't for the prednisone. Unfortunately, like many drugs available to us you must look at the risks against the pay offs.
  4. Hi everyone!! Just thought that I was share a funny story about something that happened to me the other day! I see a lot of different doctors in emergency and they all seem to have a fascination with my hands. The first thing they ask is, "Can I take a look at your hands." I am always quite amused by this and understand that it is not very often that general or emergency doctors see scleroderma. I nearly fell off my chair laughing the other day though when the dentist looking at my problem wisdom teeth asked if he could please look at my hands. I always like to see the funny side of this illness and the fact that I am slowly becomming an attraction certainly adds a lil sunshine to some of the darkness of this illness. Anyway take care all!! Love jess
  5. Hi Donna!!! It sure seems like you are going through a lot at the moment. I was diagnosed with mixed connective tissue disease 5 years ago when I was 15. I have arthritis, polymoyositis and scleroderma and with that comes the raynauds. You asked how to cope at the beginning and I guess the secret is just pushing through. The first year or so was the hardest for me. I felt so alone and didn't understand anything that was happening to me or what the doctor's medications were supposed to be doing. What helped me a lot was to educate myself. As I was 15 at the time my mum helped a lot with the research but the slero website is a great place to get info. When I was first diagnosed I had to stay home from school a lot, and I had a lot of problems with my hands and typing etc. I definately understand your frustration. I have had a lot of issues with doctors too. I have found that doctors are at first facsinated by my illness, and then lose interest. It is very annoying!! I hope that you can find help and support here and that your texts next week go well! Take care Jess
  6. Hi all!! Hope everyone is doing well. I just wanted to see how some of you deal with your loved ones in regards to your illness. I am 19yrs old and I am trying to work things out with my boyfriend of two and a half years. I find it a daily struggle helping him to understand what I am going through and the changes I am experiencing, as well as comforting him as he finds it very hard to deal with. I was diagnosed 5 years ago with mixed connective tissue disorder (sclero, arthritis and polymyositis) and while I have a very positive attitude I am becomming very drained having to support him. I have even gotten to the stage where I keep new symptoms from him in order to not upset him. Does anyone have any ideas on how I can involve him without scaring him? Thank u for all your help Love Jess
  7. I am only 19 so I don't really have this problem but it has been something that I have thought about since my fingers started to swell a few years ago. I am lucky at the moment as my fingers are very small to begin with so I can wear toe rings on my fingers and I find that works really well. My friends do laugh at me though. Take care everyone!
  8. Hi everyone! It's been a long time since I have been on here. I've loved reading all the posts, i've really missed them. Life hasnt been to good for me lately. I'm 19 years old and I have had scleroderma since I was 13... i also have arthritis and polymyositis. I am trying to finish university (education degree), work (at a kindy), see friends, find a nice guy that can support me through all the ups and downs that come with dating me.. and loving me... and it would be nice if I could save up the money to buy my auto car that I need, so I can get my licence and eventually move out. In the last couple of months I have been diagnosed with osteoporis (i have the bone density of a 90yr old) due to my long term prednisone taking... and have had a zometa infusion which caused me to be admitted to hospital... I have calcifications forming on my knees that are threatening to push through the skin, my mouth is shrinking and I can hardly fit a grape in my mouth anymore. I went to the dentist and I have to get all four wisdom teeth out... should be routine, not for me.... The risks: my wisdom teeth are running along the nerves, so I could lose feeling in my bottom lip, my mouth is so small that there is a good chance that it will split along the sides, and the with the zometa infusion I may get necrosis of the jaw... I'm just so sick of going around in circles... in treating one condition another one is caused. Life stinks! Thanks for listening everyone. I really appreciate it Hope your having a better time than I am Hopefully I'll be back on soon Love Timo
  9. Hi Sharon, I have been on Prednisone on and off, and at varying doses for four years now. I am currently on 20mg a day and have been on 50mg a day. The 50mg really knocked me around. I put on a lot of weight, I had nightmares and my mood changes were riduculous. My mum had to speak to the teachers (I was in yr 10 at high school) and tell them to let me just walk out of the room if I was angry and let me go. I am on a kidney protetor now so that's good. I think my doctor is looking at having me on it for a fair while. I also just had a Bone Density test as prednisone can affect your bones. A friend of mine has been on prednisone for several years for asthma. She is pregnant now and her pelvis is cracking from the weight of the baby and the brittleness of her bones. However, I swear by prednisone. It is the only thing that works for me. I have been on other drugs and I find prednisone to affect me the least. I am happy on 20mg a day but would not be comfortable going back to 50mg. I take endep to help me sleep because I find that I have restless sleep on Prednisone but the endep does the trick and I sleep through the night. I went off the prednisone for a year last year (I tapered down slowly) and I was good for a while but eventually had to go back on it. I always make sure that I talk to my doctor about the benefits and the risks, and you just have to weigh them up for yourself. No one else can tell you whether you should be on this drug or not, not even your doctor. If you feel that the benefits outweigh the risks, which they do for me, then take it. And also remember that this is not a forever choice. You can stop taking it. Slowly, but you can do it. Just remember that it is your body and you have the ultimate choice about what goes into it. Good luck Talk again soon Jess
  10. Hi Sharon, I recently started having problems with my itchy skin and I have found a few creams that work well for me. I use cocoa butter cream, which I love and I also use the shower wash as it doesn't dry my skin out as much as soap. But what I have found to be the best is topical vitamin E. I have pure vitamin E oil and also a high potency cream that I swear by. I guess the key is trial and error. Before I found these I tried all sorts of creams and lotions and none seemed to do the trick. Hope that helped some. Jess
  11. Timo


    Hey Kobi, I am 19yrs old and live in Australia also. My rheumatologist is currently in Melbourne or Sydney (can't remember which) at a scleroderma conference, and his big issue is scleroderma in young people so rest assured that there are people in australia looking at this illness. The probelm is that there are a lot of different opinions on what is best for scleroderma treatment in Australia. I started having symptoms 7 years ago (yr 8) and was diagnosed in yr 10 with scleroderma, polymyositis and arthritis. It is a very scary time at the start and doctors tend to leave you out of the loop a little because you are young. Really, what you are looking at in the next little while is tests, quite a lot of them. My best advice to you is, ask lots of questions, make the doctor answer every little query you have because that will allow you to feel more in control of what is happening. Secondly tell your doctor every little symptom you have because this will allow them to figure out exactly what is happening in your body. I remember that I felt awkward telling the doctor, this hurts, and that hurts, and I have this little mark here, but it all counts, and as much as you think you are being annoying the doctor needs to know. So yeah, good luck and let us know how you get on. Jess
  12. Wow Margaret, what a lot for you and your son to be dealing with. I definately know how hard school can be but I believe we are each given only as much as we can handle. That's really great that your son is getting ready to graduate and if you are anything like my mum you must be bursting with pride. Your son sounds a little but like me. Every single obstacle that I came up against only made me more determined to do what I wanted in life and succeed at my goals. Good luck for the graduation, thanks for sharing your story and I hope to get to know you and your son a lot better. Take care Timo
  13. Hi Elehos I was diagnosed with polymyositis about four years ago. My first symptoms were weakness in my shoulders, legs and hands. I got to the stage that I could not get up out of a chair or sit up from a lying position by myself. I was in grade 10 at this stage. But I was put in hospital and was given a alot of medication (50mg prednisone daily and methotrexate), and now I am a lot better. I will never be able to get full strength back, and I still have trouble with strength in my hands but things definately do get better. My rhem. says that you can't get back the muscle that you have lost, but I definately seemed to get some strength back, however that happened. So there is definately hope. Hope to hear back from you soon Timo
  14. Hi my name is Jess I am 19yrs old and I live in Australia. I have rheumatoid arthritis, polymyositis, scleroderma and raynauds. I was diagnosed 5 years ago while at high school. I'm really only now finding out the full extent of my illness and what may lie in the future. I was still a child when I was diagnosed so I have had to fight to be treated as an adult as I have grown up. It has been a huge relief to find this site! I am curently studing at university to become a primary school teacher. I am half way through my second year. I have an amazing boyfriend of two years who is a huge support, and a family that helps me every day. I love to paint and have recently been asked to place my paintings in a small shop to be sold which is really exciting. Thanks for listening!!!! Timo
  15. Hi Sharon, I also live in Australia.I am 19yrs old and have had raynauds for 7 years, long before I knew I had sclero. I know how hard it is to keep warm esspecially when so many places love to crank up the air con. I have found that I always, always have a spare jacket in my bag, just a light, but warm one. I also wear clozed in shoes pretty much all year. I have been using Nitrolingual spray for 4 years now and have not had an attack while using it. It is prescribed usually for heart patients to open up the arteries, and while they spray it under their tongue, we can spray it on our wrists. This open the capilleries almost immediately and stops an attack. Perhaps you could talk to your doctor about something like this, esspecially if you are getting frequent attacks. I hope that helps. Good Luck! Timo
  • Create New...