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About ssakar

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    Senior Bronze Member

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  • Location
    Shamrock, Texas
  1. Thanks, I was just curious because I am taking it. I don't have problems swallowing but I do believe I have problems moving food through all the channels. Sakar
  2. Is Reglan used mainly to help those with problems swallowing? Or is it also used to help with acid reflux? Thanks, Sakar
  3. I was wondering if there is a product that could flush out your system - your diegestive system?......(kinda like colon clenz) OR if this is something that would be good for us with Scleroderma? Just curious - and of course I forgot to ask my GI doctor this week. Sakar
  4. I finally got in to see a GI Specialist. Thank goodness my appt. was when it was because I had several bad nights of vomiting and was losing more weight.....now down to 100 lbs. Anyway - he switched me from Nexium to Carafate......Can anyone tell me how Carafate has worked for them? And has anyone heard of being on antibiotics daily?.......possibly forever? He tried to explain something about me possibly having an infection that just sits in my stomach due to my slow absorption rate.....or something like that. He put me on Xifaxan antibiotics for now until we get some tests ran to
  5. Sam, I can totally relate. I ended up going to the emergency room last night. I was so impacted that I thought I was literally gona die.....the cramps and pressure - well, I can' even explain. I ended up having 2 enema's.......YUCK!!! I hope you are feeling better now. Sakar
  6. I have been taking prednisone (5 mg) for 5 months now. I haven't had any bad side effects that I can tell. And I also am not sure if or how much it is really helping me. I am on so many other med's that it is hard to tell what does what anymore.... I sure would love to sit (Indian style) on the floor one day.....let alone touch the floor. So if prednisone can help with that - I would be HAPPY!! Sakar
  7. Hi Nan, I was on Zelnorm for a few weeks and it didn't seem to help.......but then that was also at a time I was very sick (before I went to the hospital). So not sure if anything would have really helped at that time. Last week I was also switched from Prilosec to Nexium........so now I'm not sure if/or which pill is doing what.....between the 'new' Nexium and the 'new' Reglan prescribed. I have had a couple of bad nights - but at least that's better than every day! Sakar
  8. I am so confused now......and everytime I call someone at SSI I get a different answer from a different representative. It is very frustrating. All I know is that I am getting my medicaid taken away from me at the end of this month. I am very very sad. The whole reason I signed up for disability is to help cover my RX's AND to pay for my 'never ending' doctor visits. (don't get me wrong - I need the money too - but my Health is overall the most important to me) Now here is my story.....For the last 5 months I have had Medicaid and SSI (450.00-Supplemental). They are discontinuing my M
  9. Hello, I have finally got moved to my little rent house next to my parents. It sure is lonely without my friend. I found a wonderful primary care physician doctor (he is familiar with Scleroderma!!!) and he already referred me to a GI specialist (1 week) and then to my rheumatologist the following week!! He prescribed Reglan to me. I was just wondering if anyone has any experience with it? Is it something that takes a while to start working? Or should it take effect soon after taking it? I am still taking the Prilosec too. I still can't seem to gain any weight. My appetite is ok
  10. I'm curious to hear your results in a few days!! I'm a little confused as to what he means by 'you having possible esophageal issues and not digestive issues'? I don't understand how the whole body works really. Sakar
  11. I too have Sclero with lung involvement and Raynauds. I have a terrible time with dry/chapped/cracked lips and also the skin around my lips and nose.......and even my ears. I have found 2 products I really think is finally helping.....one of them is a medicated lip balm and the other is another lip balm with Aloe Vera. I get them at my local pharmacy. If you need more specific information about the products-- please email me. Sakar
  12. Not that I can even get pregnant now......but I was just wondering HOW you people do it when you are pregnant (or have kids) and have Sclero/Raynaud's? I couldn't imagine trying to take care of a baby while having this disease... I actually took care of a 2 year old for 6 days not long ago and it physically WORE ME OUT!!! My muscles/joints hurt daily so I could barely pick her up.....and my hands were flaring up with Raynaud's so it was very hard to even change her diaper - let alone try to feed her. I really admire those of you who can do it!!! Sakar
  13. Yes the heat affects me. I don't know which is worse......the summer or the winter :-) The heat makes my hands really swell up and the cold makes them sorta shrivel/shrink and turn colors. Sakar
  14. When I moved back to my hometown a few years ago, I saw an old highschool girlfriend wearing gloves at a basketball game.....She showed me her hands and they were totally white at that point. She told me she has Raynaud's - but that's all. Then just yesterday I emailed a buddy telling him of my diseases and he said he knows a girl with Raynauds AND also knows of a woman with Scleroderma too. And finally, I know of a 3rd person (through my cousin) that has Raynaud's and Scleroderma.......but I was told she only takes natural herbs etc.....no RX meds. So yes - it truly is amazing how
  15. Now that I think back.......I remember at my last rheumatologist visit she said 'since there is no CURE for Scleroderma....our main goal is to get me into remission'. So next time I have my appointment - I will most definately ask her if she could explain a little more in detail what that entails. Sakar
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