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Everything posted by summer

  1. Hi Helen, I only just received the form for the concession the other day, the form was sent from the Department of Human Services, maybe you could try them in Queensland (QLD). Take care Celia
  2. Hi Sharon, I'm sorry to read your post about your diagnosis with ILD, but at least now you know why you feel the way you do. I am in a similar situation except mine has been going on now for at least 18 months, maybe a diagnosis soon I hope. Did your specialist give you an idea what the treatment would be?. I have a leaflet at home about ILD, I am not 100% sure, and I don't have any medical training, but I think maybe Prednisolone is one part of the treatment they may trial on you. I'm sure some one else will chime in soon. If you want to PM me at anytime about anything, you are welcome to.
  3. Hi Georgette, I know with me, I am mostly active throughout the day, even if I have trouble breathing, I will do some chores then rest for 10-15 minutes and so on. I know the pain is there but because I am mostly busy, with a 4 year old , I don't dwell on it. The pain finally hits me around 4pm, most days, and I struggle to get dinner, bath done for my son. Around 7pm when he is in bed, I practically collapse on the couch and thats usually when I take my pain meds. Luckily my husband does the dinner dishes :rolleyes: for me. There is no way I could sleep with the pain, it is like a nagging to
  4. Does anyone know approximately what the normal or abnormal ranges are for you to be diagnosed with Pulmonary Hypertension? I had a rather extensive Echo done a few days ago it took the technician nearly 90 minutes to do it. It has been a debate now with my doctors whether I have had PH for nearly 1 1/2 years. My cardiologist refuses to do a right heart catheterization (RHC) unless it is extremely necessary. The technician at the hospital did tell me that she managed to get the PA pressure this time but wouldn't tell me what it was. I am due to see my cardiologist on the 23rd of December, s
  5. Hi Georgette, I also can sympathise with you, my pain and stiffness is also getting beyond a joke. I am stiff in the ankes,achilles tendons, feet, it has also progressed to my lower back and hips. I also get terrible joint and muscle pain, mainly in my legs. I take pain meds for this as well as amitriptyline (Endep in Australia) for depression. It also has a pain killer in it and promotes me to get into the deep sleep cycle. My rheumatologist mentioned that having Scleroderma, it can affect the way you sleep. I could have 12 hours sleep a night and wake up exhausted as my sleeping patterns ha
  6. Thanks for the info Georgette, I called the number you gave. I do think they are quite crafty though, 17.5% discount for 3 months only during the summer months. We don't need the heating on during the summer months only the winter. Oh well, better than nothing, they are sending me a form in the mail. Many thanks Celia
  7. I know I have read it somewhere on this forum, but does anyone know what the pressures should be if you have PH? Many thanks Celia
  8. Just wondering, has anyone know if Tru is ok?. I haven't seen her post for some time. Take care Celia
  9. Hi Sam, I also suffer from this problem, I have had it for such a long time. I wake up in the night and my hands sometimes feel dead or I have pins and needles. I have mentioned it to my rheumatologist, she doesn't seem to concerned though. take care Celia
  10. Well, I think it has only been 3 months since my last bout of Bacterial Overgrowth, It is back with a vengeance. I was on the toilet for two hours this morning with severe cramps, diarrohea and nausea. Luckily my GI doctor had given me a script of antibiotics in case I needed it. Does anyone have any suggestions with what I should eat or avoid at this horrible time. Many thanks Celia
  11. I have had numerous Echo's in the last 18 months, like the others It was an ultrasound of the heart. On one of my ECHO'S though, they did a bubble study to check I think for PH and to look more thoroughly at the heart. I had a needle put through my vein at the back of the hand and they injected something through. It was quite painless and was ok going home on my own afterwards. Take care Celia
  12. Thank you all so much for all of your suggestions, I am surprised at the response to this post. Shelley, I am still trying to find the right orthotic for my shoes, I know this will help a lot and of course money is an issue. Judy, My rheumatologist will not put me on anything like Plaquenil, there motto is, treat the symptoms if they can, watch wait and see. It is so frustrating, but what else can I do. I have tried a few Rheumies else where and their attitude is alot worse. Many thanks and I will keep you updated. Celia
  13. Hi Karen, sorry to read that you in one of your flares right now. Regarding the heartbeat you can hear whilst laying down, I have this constantly and can also see my pulse in my neck when this is happening. I have Tachycardia and am on medication to slow my pulse down, but from time to time I still get the palpatations. take care Celia
  14. Hello, I'm just wondering what anyone takes for stiffness and joint pain? I suffer from stiffness mainly in my lower back and feet,achilles tendons, ankles, to the beginning of the calves. My joint pain I probably get 3-4 times a week mainly in my legs. I am a bit fed up of painkillers which will take away the joint pain but does nothing for the stiffness. I have tried anti inflammatories, which does nothing, the only thing that worked was Prednisolone, which I have now been off for 12 months. Any suggestions would be greatly appreciated. I do have CREST/limited Scleroderma and Fibrom
  15. Thanks for the link and quick response Jefa, it is most appreciated. Take care Celia
  16. Hi Margaret, I also take Zantac in the morning with breakfast and Nexium in the evening at dinner time. Take care Celia
  17. Could someone please tell me what IVIG is, and what is it used for? Many thanks Celia :unsure:
  18. I have suffered from sore throats since I was a child, If anyone mentioned a sore throat, sure enough , I was most likely to get one. My tonsils are always large, one time my throat was so sore I couldn't even swallow water, it felt like I had glass in my throat. My local doctor gave me penicillin injections everyday for a week before it went. I have not felt any hardness or anything weird like that. Take carre Celia
  19. Hi Sharon, Thanks for the update, I also have mild swelling at the back of my ankles but have thought nothing of it. How bad is the swelling from 1 to 10. Thanks Celia
  20. Hi Sharon, Glad to hear that Dr Sahaar called you about your problems, they are a great bunch at Monash and also good with follow ups if you need them. Try not to worry too much about your test results. If there is one thing I have learnt about this disease it is patience. Take care and rest if you are able. Celia :D
  21. I also have I think pitting though it is on my knuckles on my fingers, not on the hand. I first noticed it months ago whilst I was bathing my son. It seems to be very wrinkly and indented when I put my hands in the bath water and apply pressure to my knuckles. When I take my hands out of the water the skin on the knuckles seemed stretched over the bones and I can actually move the skin from side to side if I want to and it stays in place. Thanks Celia
  22. Hi Sharon, If I was you I would give Kathleen (nurse) at Monash a call, and explain the problems with the swelling. It might be nothing to worry about, but It is better to be safe than sorry. Usually, she would give Dr Sahaar a call to see whether it is worth you coming in, or she may give you an over the phone consult, considering you are so far away. Let me know how things get on. Take care Celia
  23. Hi, I just thought I would add my two cents in here... I have read somewhere that there is more people suffering from Systemic Sclerosis than Muscular Sclerosis MS. Yet, everyone has heard about MS, but know one knows about Scleroderma. Thanks Celia
  24. Hi, I also have been diagnosed with having Crest/Limited Scleroderma, I have had it now for the last 18 months or so. I have tested positive for anti-centromere antibodies as well as a high ANA titer:1600. I only developed Raynauds 3 months into my diagnosis. I currently don't have any hardening in the skin ,only two puffy fingers. I have felt the tightening though on my face and on both wrists. Oh, and also have the dilated nail capillaries. My mouth is also small and I have ridges under my bottom lip. Since my diagnosis, I have alot of internal things going on, Tachycardia(fast heart
  25. I have just got home from seeing my Cardiologist at the hospital. Many of you may remember that for nearly over a year now there has been some speculation to me having pulmonary hypertention. On one of my baseline echo's it did state that I did have PH, but after another echo I was told probably not. I have Tachycardia which is now being controlled with medication for some time now. My baseline pulmonary fuction test was above normal in all areas, 6 months later, my DLCO was below normal, 3 months later after another test it had remained stable. My SOB for the last 6 months was only on exerti
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