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Everything posted by barefut

  1. barefut

    Nitroglycerin For Raynaud's

    Bookworm, WOW! Thank you for sharing your story. I learn so much from people like you who are willing to share their experiences. And I love when they have happy or even happy-ish endings. I'm so glad you didn't have to amputate and that your doctors learned something from it. I bet you were so happy to see that dead skin fall away and see pink underneath! I like the idea of Viagra treating 2 sclero related illnesses. Maybe Viagra can serve as a preventative treatment for PH for me as I also have ILD and I always have PH in the back of my mind. Thanks again for sharing, Love, Barefut
  2. I've been reading and thinking about all the awful things scleroderma does to our bodies and the medications and treatments for each related ailment. One of the most important things about being proactive in our own care is to nip symptoms in the bud, catch them early and get proper treatment right away and not wait until things have progressed to a debilatating stage. I've been discussing my Raynaud's and my finger here and I have known about Viagra and Cialis as treatment when calcium channel blockers don't seem effective, or effective ENOUGH. I am going to ask my rheumatologist about these at my next visit. I know it is traditional to start with the milder - for lack of a better word - medications first and then go for the big guns when all else fails. I just think that at the first sign of failure we need to consider bolder treatments and maybe we can nip some of our symptoms in the bud and then they may never progress into anything debilitating. Just a theory of mine that seems to make sense..... Although, I know that most of the bolder treatments also come with their own set of dangers so its always a hard decision to make for both doctors and patients. I also just wanted to remind everyone new to their diagnosis to pay close attention to their bodies, write new symptoms down even if they seem insignificant or unrelated, and let their doctors know. That's the best way to nip things in the bud. Take Care All, Barefut
  3. barefut

    Nipping Symptoms In The Bud

    Sharon, Your rheumatologist's attitude is exactly what I'm talking about. I don't agree with the "wait and see"...or the "you're not that bad yet"... I'm proposing sooner and/or bolder treatments as a PREVENTATIVE measure which may prolong the use of our hands, lungs, kidneys, and hearts. Granted it's not wise or possible in all situations but when and where it IS possible I say go for it! Barefut
  4. barefut

    Recent Blood Work

    I'm sorry you're feeling yukky Sweet. (((((((((((((((Take care and take it easy!))))))))))))))))))))) Keep us posted. Love, Barefut
  5. barefut

    Nitroglycerin For Raynaud's

    Bookworm, Thanks for all the info! I do have some lidocaine cream that's almost gone - I can't remember where I got it. It is hard to find. I got it off the shelf but I may have to have pharmacy order some more for me. I had been using it for ingrown toenail. My finger is not that painful yet - maybe a 2 or 3. But I still want to try Viagra or its equivalent as a preventative measure. From what I've read and heard (from more people than just you) it does a much better job of increasing blood flow than CCB's. I am so sorry you have had to deal with so much pain from this. So, what happened to your really bad ulcer? Did you have to lose your fingertip? Were you on Viagra or Cialis when you had your bad ulcer? Thaks again, Barefut
  6. barefut

    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
  7. barefut

    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
  8. barefut

    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
  9. barefut

    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
  10. barefut

    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
  11. barefut

    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
  12. barefut

    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
  13. barefut

    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
  14. barefut

    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.
  15. barefut

    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
  16. barefut

    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
  17. barefut

    Waxy Face

    Hi Celia, My skin symptoms are the same as Lizzie's on my face. Not supple. Barefut
  18. 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...
  19. 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
  20. barefut

    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
  21. 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
  22. barefut

    For Pity's Sake

    Tammy, So glad you have your feeling returning. Sounds like you didn't need one more thing! Take Care, Barefut
  23. barefut

    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
  24. barefut

    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
  25. barefut

    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