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  1. Snowbird, It is my understanding that drugs like Nexium control the production of acid while tablets such as Tums neutralize the acid. I had severe acid reflux and I could not get it under control with any of the medication. I basically have little/no esophogus motility. My flap separating the esophogus and stomach was completely gone as a result of the acid having eaten it away. Ultimately, I had fundoplication surgery which helped dramatically. The surgery is such that the esophogus is stretched and wrapped around the stomach to make it difficult for the acid to come up into the esoph
  2. Kelli, When I was initially diagnosed, my white cell count was 14. The normal range is between 4 and 10. At the time I was given IV cyclophosphamide and the drug drove my white cell count down to 6 but the doctors wanted it down more- to below 4. As such, the cyclophosphamide dosage was increased for the last 3 treatments and my white cell count hit just below 4 by the end of the last dosage. I have since then used my white cell count as an indicator of how active my disease is. My count went from the 4 to over 10 within 9 months and I seemed to be heading higher. At that time, I decided to en
  3. jackie, Just an FYI -- I have sclero and my esophogus does not work at all and the flap at the stomach is gone. As a result of all this my acid reflux is horrible and sometimes not under control. My GI doctor recently had a probe inserted into my GI tract which recorded my acidity over a 48 hour period to an external device and the record will be reviewed. The thought is that if my stomach acid is very bad that I will need some sort of stomach reduction in order to produce less acid. I am assuming this would be some sort of lap band procedure. The concern is that I am in danger of developi
  4. Barefut, Here is a suggestion -- Submit paperwork requesting FMLA (Family Medical Leave). Then for the 2 hours that you leave early each day, have it charged to FMLA. On the days you choose to not leave early, then your time would not need to be charged. Of course, the reason you are leaving 2 hours early is to take care of yourself -- don't say you need it to manage the household. I believe you are entitled by federal law to 8 weeks of FMLA leave every two years. In some states ie. Connecticut, you can take up to 16 weeks of FMLA leave. Your HR dept can give you this info or you can find
  5. Raechel, I am so sorry to hear about your daughter. You must be frantic! My suggestion is that you get with a sclero specialist as soon as possible. There are only a handful throughout the country but I think they are all very good. My personal experience has been positive with Wigley out of Johns Hopkins; Medsger out of Pittsburgh and Varga out of Northwestern, Chicago. You can also try Spiera out of NYC if that is closer. In any event, what you will want is to develop a team of doctors -- you need the sclero expert; you need a local rheumatologist to support the sclero expert; and you ne
  6. Margaret, My rheumatologist told me NOT to get the H1N1 vaccine as there is no way to tell how someone with an autoimmune disorder will react to it as it is so new. In the meantime, a sanitization gel is my new best friend. I do not plan to get the flu, pneumonia or H1N1 vaccines as I believe that I got sclero from the Hepatitis or Typhoid vaccines. Can't prove that these vaccines caused sclero but within 8 months of the vaccine, I had it. I am also holding off on my daughters Guardasil and spinelmengitus vaccines until I see what happens with the H1N1 as there is no reason to weaken her sys
  7. Hi Deb, I am not sure if you are on the oral or IV cytoxan. I did 6 monthly doses of the IV cytoxan and here are is what I think helps. First drink lots of water -- you want to flush the drug out of your system. By lots of water, I mean an 8oz glass every 2 hours. And try to do this for most of the month. I used to do it for 2 weeks and then got lazy the last 2 weeks. The other thing is to make sure you do absolutely Nothing the day of the treatment and the day after. If you do this, by the 2nd day you will start to feel better. If you don't, then the cytoxan will knock you on your b
  8. tonya, I have seen Dr. Medsger (Pittsburgh) and Dr. Wigley (Baltimore). I decided to see Dr. Wigley as he likes to RX cellcept while Dr. Medsger does not. At the time of my decision, Cellcept was the "new" drug. Both doctors are very capable. I have also heard good things about Birdman's Dr. Shanahan. I use Dr. Wigley to RX drugs/treatments, however, as I live in Florida -- the Mayo Clinic performs the treatments. When I was in CT, my CT rheumatologist would have the treatments done in CT. It is important that no matter who you decide on, that you have an excellent rheumatologist near
  9. Ani, I have been on Gleevec for over a year now. I initially received the drug as part of a clinical trial out of NYC with Hospital of Special Surgery. I am now in the follow up trial. The clinical trial is getting ready to publish their results for October and the doctors have told me unofficially that the drug has been promising. As I have lung issues and some skin hardening, my main hope was that it would work effectively for my lungs. After a year of the drug, my skin score went from a 21 to an 11 -- so I think it worked marvelously for that. As far as my lungs -- well they have rem
  10. Alex, When I travel, I take anticeptic wipes and when I get on the airplane, I wipe down everything that I will touch -- the arm rests; the tray, the seat belt clips, etc.. While in the airports, trains, subways, etc.. I always carry a little bottle of germ killer and am constantly using it numerous times a day. Like you, I am very concerned about the swine flu. Should we have an epidemic, I expect to begin wearing a mask. Also, I try to wipe down grocery carts too. In general, I try to not shake hands. I think the best we can do is think about it and try to keep our hands clean. Whe
  11. Eddie, Used to live in Connecticut and moved to Northeast Florida. I have sclero with lung involvement and Raynaud's. The change in weather helped me in the following areas: - Warmer weather improved circulation. Less sores on my fingers. - Slower lifestyle eliminated stress - Humidity was good for my very very dry skin. - Good weather all year which means that I can walk all year which has been good for my overall fitness. In CT, during the winters I would be curled up on the couch which kept me stiff and sore. I believe that my change in lifestyle and environment has had a huge im
  12. Barefut, What is the name of the generic? Thanks. Gidget
  13. Angie, I also have just become eligible Medicare and the prescriptions plans and here is what I have found. 1 - Contact your state insurance department to find out what medicare supplement programs are eligible to you. This is especially important if you are under 65 as not all medicare plans are available to you. For example, in Florida there are no medicare supplemental plans available as I am under 65 and disabled. In Connecticut, I can purchase Plan A, B and C. These are the only plans that can be sold to me. I believe each state is different. Also, keep in mind that Medicare c
  14. Birdman, I am sorry to hear that your lungs are not holding. Mine continue to drift downward slowly. Yes, I did the IV cytoxan. Yes - I tried the Cellcept -- couldn't handle it -- it made me bleed. Yes - I have had a RX for Imuran but decided not to take it. Instead I did the clinical trial for Gleevec (leukemia drug) and I took Gleevec for a year. MY PFTs remained the same or slightly better year over year and my skin did great. I think I went from a skin score of 21 to 10/11. Also, the skin biopsy showed an improvement year over year. I am now trying to get into a follow up
  15. My ear lobes have shrunk as well. Gidget
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