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Everything posted by barefut

  1. Nitroglycerin For Raynaud's

    Bookworm, Thanks, I do intend to ask about both those. I've been through Nifedipine and Norvasc but had side effects so I've been taking Felodipine and up until now have been okay on it. I still have Raynaud's attacks but not that often in the summer. Fall is coming and I am dreading it. Thank you for your details about dosing, insurance coverage and cost as I am financially strapped at the moment. It may be out of the question if insurance won't pay. :( But I sure would like to try one of them. Barefut
  2. Going Off Prednisone

    Woke up to rain and stiffness. Probably the beginning of summer would've been the better time to go off pred. I wish there was something else. Shelley, I am copying those and taking them with me to my appointment in September. Thanks, Barefut
  3. Going Off Prednisone

    Thank you Shelley, My rheumatologist told me that I could go off it anytime I wanted and she instructed me how to taper down. Since I was only on 5mg, I went to 2.5 and then off. Thank you for your concern. Barefut
  4. Mitochondrial Disease

    Thank you for the interesting info Joe. I'm sure you enjoy being an interesting case huh? If I feel fatigued, I can only imagine how you must feel! Take care, Barefut
  5. Lisa To Be In Today Show Crowd Friday Morning!

    I looked but did not find. It was a crowded concert day. Tell us how your trip was Lisa! Barefut
  6. Esophageal Dismotility

    Margaret, I can feel your relief. I am so glad Gareth is feeling better and that some of your worry can go away. Barefut
  7. Cold Hands

    Something to think about........ When I'm not sleeping in my recliner, I tend to curl my hands up under me at night and will wake up with both hands asleep. Then I worry about my Raynaud's. So I started sleeping with my left wrist brace on and it helps a lot. I need to get a righty now. B
  8. Nitroglycerin For Raynaud's

    Peanut, That makes sense. I haven't seen rheumatologist on this yet, only ARNP and he probably just assumed to only put it on the affetced area. I'll call rheumatologist on it. I'm sorry your "sink" gets very warm - that's a weird side effect! ;) Thanks for the giggle. Barefut
  9. Muscle Weakness

    Hi Jen, Sorry you are feeling so wiped out. I get the same muscle fatigue you describe. I feel like I shouldn't complain sometimes because I am overweight (and out of shape!) but when someone of your size complains of the same feeling, I feel vindicated. I'm having an exhausting day too. Gonna have to put this one down in the books as a non productive day! Join me on the couch with blankie and remote or a good book..... Hope you have more energy tomorrow. Love, Barefut PS did you take your "B's" I just took a B complex with breakfast like a good girl.
  10. Nitroglycerin For Raynaud's

    Diana, I have not heard of the patches. They sound a lot more convenient and less messy than the cream. It does not rub in and I end up wrapping it but I can't wrap it too tight or else it cuts off blood flow and if it's too loose, it falls off. Peanut & Diana - I have not had a headache with it yet - maybe because it's just such a small amount on just the tip of one finger or maybe the concentration is less than yours? Tammy, I have wondered about Viagra too - if CCB's aren't doing the trick, I'll be asking rheumatologist about it but I guess there are probably more ill side effects with Viagra? Thanks Nan. Night all, Barefut
  11. Never Ending Tooth Problem

    Jen, I have always wondered that too - about having to go off Cellcept for awhile to treat an infection...Like how long does it take before our immune systems bounce back and can you just quit cold turkey with no ill effects or should you wean off like you weaned on? And when you go back on do you have to wean back on again or does it depend on how long you were off it? Just full of questions sometimes.... I have not had any problems like you're having so I am no help. I hope you heal up soon! (There are little gnats buzzing my screen, as it is the only light on in the house - very annoying!) Good night, Barefut
  12. Waxy Face

    Hi Celia, My skin symptoms are the same as Lizzie's on my face. Not supple. Barefut
  13. I'm just trying to put 2 and 2 together and prepare myself for the next round of tests. My symptoms: Fatigue Increased SOB Dizziness Lightheadedness Worsening Raynaud's Rapid heartbeat withapnea So far I only have 3 "ologists" I have yet to add "cardio" to the lot but I'm sure it is inevitable...
  14. I have had to learn and re learn to live in the moment and appreciate every little thing. I have become more thankful and grateful for the things I have and the things I am able to still do, and the places I am able to still see. I have also become more sensitive to other people's suffering. Good topic. Thanks, Barefut
  15. Been having a burning in my esophagus only at night. Does not matter if I'm sleeping or not, lying or sitting - weird. It just started up a few minutes ago. The last thing I ate was a few corn chips hours ago. I took my medication about an hour ago. The only difference lately has been the addition of fluoxetine and probiotics. I've also been having more dizziness and nausea but that was well before the addition of new meds. I also am feeling full after eating less than 1/2 what I normally do. Maybe that's the fluoxetine side effect. (Wouldn't hurt me to lose a few pounds !) *SIGH* I guess it could be worse but I sure wish I felt better. There's nothing stopping this burn. Gonna be hard to sleep.... Incidentally, does anyone take more than 40mg Prilosec or the equivalent daily? Good night, Barefut
  16. Dizzy, Nausea, Esophburn

    Thanks for all your replies! I was curious what the max dose of PPI's is - hoping I still had room to go. That night I took 2 antacid tablet, letting them dissolve slowly and slept in my recliner. No more snacking after dinner for me either. I think maybe salt could have aggravated it. It was weird because it felt different. I felt no heart burn or reflux, I just felt the back of my throat burning. B
  17. For Pity's Sake

    Tammy, So glad you have your feeling returning. Sounds like you didn't need one more thing! Take Care, Barefut
  18. What Are You Taking

    I've been on Cellcept for a year and a half. Lungs have been stable for a year. I have the same questions you do. Will ask them at appt next month. Take Care, Barefut
  19. Update - Good News For A Change

    Thank you for sharing your good news Janey! My heart did little leaps of joy while reading your post. Love, Barefut
  20. Diet For Gi Issues

    I've been wondering about diet, the same as Jennifer, about my GI issues specifically, which have been flaring and there seems to be no rhyme or reason as to what I eat or don't eat that makes it any better or worse. I've been taking probiotics off and on but for the past week have gotten serious about them and put them in my daily pill dispenser. No improvement yet. My appetite is ok but I don't want to eat because of the inevitable.... :( Has anyone found anything that works for them or can you tell me what food triggers I should avoid? One thing I have learned is I cannot drink even decaf from my favorite espresso shop or I will be in pain within 20 minutes. I have been toying with the idea of going all liquid with fruit/yogurt smoothies and vegetable drinks to see if that helps. Thanks, B
  21. Diet For Gi Issues

    Oh man that sounds awful! How were you able to keep working? I had no idea antibiotic treatment would have to last so long. That must be because the root of the problem (dismotility) cannot be fixed? You must also suffer with side effects from the antibiotics? I am sorry you can't be without them. So glad you are doing better now! Thanks for sharing. Barefut
  22. How long have you been on Cellcept? If you have been "stable" for a year or more, has your doctor recomended that you switch to something else or go off immunosuppressants altogether? Thanks, Barefut
  23. How Long Have You Been On Cellcept?

    Meg, I am in pretty much the same boat as you. I have diffuse and my DCLO has stayed between 67% - 70% for the past year. My rheumatologist told me at last visit that since I have remained stable, pulm doctor may want to (or agree to) switch me to Imuran after I see him at next 6 mo check up in Sept. They both know of my financial crisis and that I can't afford to pay the 30% my insurance does not cover. I have gone back into debt paying for it this past year and a half. Anyway, I am a little worried about being a guinea pig too! What dosage are you on now? Maybe we can quit at the same time together and publish our own study! I have Roche's patient assistance program applicaton ready to take to doctor to fill out but am afraid I will not qualify. A year ago my rheumatologist said that Imuran would probably be the next choice but they REALLY wanted me to stay on Cellcept. (That made me feel like an experiment.) If they are both immunosuppressants, I wonder what big the difference is besides the price. Do keep us posted on you! Thanks, Barefut
  24. Diet For Gi Issues

    Hi Joel, Did you have any other symptoms besides gas and weight loss? I keep getting needle like stabbing pains in my upper abdomen as well as diarrhea. I have heard of bacterial overgrowth but not sure what to watch out for. Thanks, Barefut
  25. Losing The Wrinkles!

    Lizzie, I find myself in front of the mirror in tears from time to time. We need to grieve the way we were. It's not being vain. Take Care, Barefut