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About alice1

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    Senior Bronze Member

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  • Location
    North Caroline
  1. NO magic bullet under the holiday tree but it a beautiful day and I have doubled up on my Domperidone.. Judyt hope you are feeling better. Happy Holidays to all...alice
  2. Thanks for the replies. Judy, Jo and Shelley Doing all of the above except for the feed tube yet, was looking for a magic bullet...alice
  3. Have her ask her Dr. about Cellcept, generic Mycophenalate. Many of us take it for the lungs.
  4. Anyone have problems with their stomach, mal-absorption, vomiting and diarrhoea and what helps? Thanks.
  5. I have been on Cellcept for 13 years without serious side effects. My doctor at John Hopkins has kept me on it because of its positive effect on the lungs. I have damage done from the early stages but have been in remission for most of those years. My biggest problem and getting worse is my digestive tract vomiting and then serious diarrhea, often and prolonged. Doesn't seem to be to much they can do about it. Any ideas?... alice
  6. Kathy...I too have breathing problems but my echo is fine, lungs are ok, heart good, we are still searching for the problem. Good Luck
  7. Have not posted forever but I would like those who have acid reflux to know, in addition my normal meds. of Nexium and other stomach meds, I am now taking a tbls spoon of honey and vinegar with another 6 oz. of water or more to taste, hot or cold. It has done wonders for my stomach. The acid in the vinegar tells your stomach not to produce so much if that makes sense. I can sleep at night. Hope it helps someone.... Alice
  8. For what it's worth, my Scleroderma specialist in Baltimore and my gastro intestinal doctor in Virginia, without contact, have both said no to surgery for me. They thought it would make things worse.... alice
  9. Thx Shelley...as always a wealth of knowledge. I do have hypothyroidism and take meds, he has now added Lovaza. Hope it helps my hot flashes and my triglycerides....alice
  10. Just had confirming blood test. My triglycerides jumped from 210 to 374 in three months which is high, now another medicine. I am slim at 125 lbs. My BP is 110/60, cholesterol 153, HDL 26, LDL 52. Something doesn't add up. Anyone else having this problem? alice
  11. SaraM, The scleroderma center at John Hopkins has notices of trials and studies being done there. All of the doctors there are wonderful and I'm sure they can help. Best, alice
  12. Angie, I had an AARP plan that did not cover generic Cellcept even though it showed approved on their list. When it came down to it, it was approved for transplant patients only. I changed back to a previous company that I used prior. Cellcept and Nexium are the most costly drugs I use so it is important that your drugs are covered and sometimes you don't know until the druggist turns it down. If you want the name of the Medicare Advantage plan I use, PM me. alice
  13. Gigi, I have been on Cellcept for 8 years. and I am in remission and have been off and on for all this time. I think I was one of the first on it and it has worked wonders for me. My doctor has tried to get me off of it but my systemic sclerosis (scleroderma) comes back with a vengeance. So I'm a lifer. It takes 8 weeks to get in your system and you should feel the pain in your joint lessening and the fatigue should get better too. Some people can't take it but you will know shortly. Good Luck, alice
  14. Susie...I have been on Cellcept for 7 years. I just take it whenever, no scheldule. It got me thru the rough times, first three years. After that it put me in remission. We know that because my doctor at JHU has taken me off of it three times and Ssc. comes back within 6 wks. Because I was put on it so early I think it kept me from have early I organ involvement. We have agreed I will be on it for life....alice PS: Good Luck
  15. Relicmom1...it takes about a week....alice1
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