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Everything posted by alice1

  1. alice1

    Stomach problems

    Anyone have problems with their stomach, mal-absorption, vomiting and diarrhoea and what helps? Thanks.
  2. alice1

    Stomach problems

    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
  3. alice1

    Stomach problems

    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
  4. Have her ask her Dr. about Cellcept, generic Mycophenalate. Many of us take it for the lungs.
  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. alice1

    Heart Echo Test Worries

    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. alice1

    GI Testing Completed

    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. alice1

    Does anyone have high triglycerides?

    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. alice1


    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. alice1


    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. alice1

    anyone on domperidone?

    Relicmom1...it takes about a week....alice1
  16. alice1

    anyone on domperidone?

    As I undersstand, it can be prescribed at a teaching hospital. I have been on it for two years without any side effects.....alice1
  17. alice1

    Pins and needles in legs

    I had pins and needles the first few years after getting this disease but it did go away. I hope yours will too. alice
  18. alice1

    Newly Diagnosed - Possibly CREST

    fjperry, My scleroderma doctor is at Johns Hopkins. He too says the sooner you get treatment the better. I could hardly walk when I started seeing him. My disease was progressing so fast. He started me on Cellcept which slowed the systemic scleroderma (SSc) down and put it into remission and has reversing most of the past damages. I have now been on it for 7 years. and in fact have tried to come off of it and the scleroderma comes back. So I am on it for life. All of this is to tell you, there is much hope, just find a good Scleroderma Specialist.... alice
  19. alice1

    Long Term Disability

    Barefoote...My doctor, a Ssc. specialists, told me to quite work and apply for disability. He said it would take a long time and I would receive a few denials but it would finally be approved. He was right, I was denied, got a lawyer and still denied, set a court date and got a letter of approval one week before the date. I guess they were hoping I would drop the case. All of this took about 2yrs. A hard wait but I liked the back pay but not getting the disability insurance cost. Hang in there, it will go through...alice
  20. alice1

    Another kidney

    Wonderful, you're in my thoughts...alice
  21. alice1

    Update on me

    Hi Susie, I've been on Cellcept for 7 years. with no side effects at all and in fact I can not come off it. I am in remission and have tried to stop taking it twice but the systemic sclerosis comes back in about a month. It is a great drug but not everyone can take it, some people have trouble with their liver. It takes 6 weeks for it to get fully in your system and to get the full effect. I wish you well and hope it works for you as well. alice1
  22. alice1


    Thanks Shelley, I'm all better until someone suggests something else.....alice
  23. alice1


    Cathy, My doctor at Johns Hopkins keeps me on Cymbalta. He says our body are under normal stress whether we realize it or not and our SD is effected by stress and it is important to be calm. In fact, last year I had light laser on face for my telangiectasia. My husband had emergency surgery (he is fine) and all the red spots reappeared overnight. That is what stress does for us....alice1
  24. Emmi...great attitude....alice1
  25. alice1


    Ann, Interesting, I just had a CT on my lungs and found out I had a broken rib. It didn't hurt before the call but now it hurts. I identified the spot to the nurse on the phone and I was correct but I think my head is playing games... alice1