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Angel Sky

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About Angel Sky

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    Bronze Member

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  • Location
    Greenville, SC

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  1. Thanks, guys. It does help to "talk" about it. My husband is very supportive and loving, but of course, he can't relate to my symptoms as much as other Scleroderma patients can. I hate this latest sign of my disease!! It feels like the disfigurements just keep on coming. Hands, wrists, arms, face, etc, etc. Sometimes it seems like it's all too much!! I try to keep a brave face for my family, but at times I just want to sit in a room and cry. :emoticon-bang-head: Anyhow, enough whining. It does help to talk to other sweet people like you guys. Thanks !!! ANGELSKY
  2. Has anyone here experienced skin on your forearms that has a ripple like appearance? I haven't posted in the forums since last year as I have been going through some depression regarding this disease. I am currently on steroids and have gained back all the weight I lost a year ago(about 40 pounds!!). The weight loss was unintentional at the time, and my husband was very worried. Now I have a tremendous appetite and keep gaining. I can't seem to win!! One of my concerns right now is that recently the skin on my forearms has taken on a weird ripple effect. Is this common with this d
  3. My doctor wants me to start on Reglan, as my Sclero has given me swallowing problems. I have lung issues too. I am worried about starting Reglan, as I have seen a lot of ads lately about severe, irreversible side effects. My doctor said that on the dosage I am to start on, the chances of getting this "Tardiff Dyskenesia" is infinetessimal. Still..... :wacko: Anyone know anything or had any experience with this med?
  4. Hi Caroline! Welcome. I am fairly new myself. Hope your day is going well. I was diagnosed last summer after having suffered for 5 years with what 3 Rhuematologists thought was RA. So I was not being treated properly, especially for my lungs. All the doctors thought I had allergies(all year long ? and in 2 different states?) Well, I have severe Pulmonary Fibrosis now, so I guess they were wrong!! Anyhow, just a word to the wise, any new symptoms you have should be well documented and discussed thoroughly with your doctor. If your doctor is not one to listen, find another!! Your he
  5. Just putting my 2 cents in here, but for me, Cellcept made me have massive bathroom issues and severe stomach pains. I was taken off and put on Immuran. I still have some issues, but no more pain, though I do seem to have taken stock in Immodium!! Cellcept, I am told usually helps stop lung issues. I have very bad lungs, and so far the Immuran seems to help about as much as Cellcept. Of course everyone is different. I have been seeing a Rhuematologist formerly associated with Duke university and he is having me take another breathing test before I he looks at Cytoxan I V for me. I hate I
  6. Are the sports bras longer ? I'm not really big chested, actually much smaller since the Sclero made me lose so much weight, but can't stand most bras since I had an open lung biopsy to determine if I had Pulmonary Fibrosis(I do). The three scars still hurt!! Do they have sports bras for smaller (B cup) sizes? AngelSky
  7. Hi Alice1, et al:Thanks for the info on Cellcept!! Alice1 did you have digestive problems before the Cellcept? I'm just wondering because I have almost constant diarrhea and weight loss. The stomach problems have been happening for years, but the past 6 months it has been much worse, so much so that I take antidiarrheal tablets twice a day. I guess I should buy stock in the company! Thanks so much for any further info!!! Angel Sky
  8. Hi: Just heard from my Sclero doctor in Charleston regarding Clinical Trials on Dasatinib. Looks like I don't qualify afterall. My skin is just not bad enough!!! :) It was recommended that I go on Cellcept for my lung involvement. Anybody currently on that? I will have to wait two weeks or so to go on it as I'm having my Thyroid removed on Friday. Take care. Angel Sky
  9. Welsome Amberjolie!! I am new too! Just joined the forum a few days ago. I know how you feel!! I was misdiagnosed for 5 years with RA instead of Scleroderma. I have new doctors that seem to know what they're doing for a change. Make sure you get second opinions and make sure to ask questions. I hope you have some good support at home. Good Luck and take care!! Angel Sky
  10. Hi Lynda: Just wanted to let you know my experience with Methotrexate. I am newly diagnoed with Scleroderma( for 5 years they thought it was RA). Anyhow, my lungs are badly damaged, and the doctors are telling me that Methotrexate was most probably a large contributing factor. They took me off of it after have been on it for the whole 5 years. You see, my original doctors did not bother with tests or xrays and when I finally found some good doctors they were shocked at the damage to my lungs which should have been discovered much earlier. I now will need a lung transpalnt sometime in
  11. I get Raynauds too, but haven't had the extreme skin tightening that you speak of. My Rheumatologist put me on Lisinopril ( a blood pressure med) to help my circulation so Raynauds won't be so bad. I've only been on it 2 weeks, but it seems to be helping. It's also supposed to be protecting my kidneys, which Raynauds can damage? Also, does anyone have any good suggestions to keep feet warm? In the winter my feet turn blue, and the regular white athletic socks don't do the trick! ;)
  12. Hi Alex: I'm new to this forum, but not new to pain. I have all the symptoms that you do, including the Intestitial lung disease. I was only diagnosed with Scleroderma about a month ago. For five years I was misdiagnosed with RA (rheumatoid arthritis) and therefore for 5 years I was getting the wrong medication! I'm now getting ready to have myThyroid out on Friday(I have a muti nodular goiter). Anyhow, I can sympathize with you as I've had many surgeries and am being considered for a lung transplant. I am not on the list yet, pending more tests, but hopefully soon will be. Is transplant
  13. Thanks, everyone for all the kind words. All of my friends and aquaintances haven't really heard of Sclero and can't offer much support. My husband is great, and is urging me to try the clinical trials even though they would be 4 hours away in Charleston( I live in Greenville, SC) and I don't really know how I would get there! He is the one who researched and found out about The Univeristy Medical Hospital of SC which is having the clinical trials. I'm supposed to get more info next week on the trials. I'll keep you posted. Meanwhile, on Friday, I'm having my Thyroid out. I'm a little ner
  14. Hi, I'm a new member who finally got the right diagnosis after 5 years. For 5 years I believed that I had RA (rheumatoid arthritis). In all this time, I have been taking the wrong medicine. I know many of you have the same stories and I would like to discuss this a little more. The problem is I have been having this cough for 4 and 1/2 years and none of the RA doctors took it seriously. The other doctors told me that it was probably allergies or post nasal drip. Didn't they know that RA and lung problems go hand in hand? They NEVER in 5 years sent me for an xray or CT scan. Com
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