Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About red

  • Rank
    Senior Bronze Member

Profile Information

  • Location
    Upstate New York State
  1. Hi Marsha, is today the day you start your plaquenil? I've been on it for a few years now. I remember it mildly bothered my stomach - queasiness - when I first started it, but that side effect went away within a couple of weeks. My rheumatologist warned me it would take up to 6 months to feel an appreciable effect, and yes it did seem to take that long for me to notice a gradual lessening of my fatigue issues. I did stop working during that first year on it, so, at the time, I wondered whether I had less fatigue because of the plaquenil or because of my new lifestyle's slower pace.
  2. Hi friends! I too suffer from this embarrassing and quite inconvenient problem. Both my rheumatologist and colon specialist have told me that my poor muscle tone in the rectum and anus are due to scleroderma, similar to the poor motility that affects my esophagus. While I've found some benefit from an over-the-counter fiber supplement that my GI doctor recommended, as well as biofeedback muscle training, I still have days where I just know it's not a good idea to leave the house! Yesterday I saw my GI for my annual visit - he mentioned a new treatment for fecal incontinence called
  3. Congratulations on your promotion Jo! Thanks for doing so much for all of us! Hugs, red
  4. Hi Cantuse, congratulations to you and your wife on the new baby! I'm sure he will fill your days (and nights!) with much joy! I can't advise you on on the SCL-70 as I've always tested negative on my antibody screens, but I have been taking Plaquenil for over a year now. Mildly upset my stomach for the first month or so, but that went away quickly. I do get my eyes checked every six months, and so far, no adverse effects there. Effect-wise, it's definitely not a "wow I feel great now" difference, but after around 6 months there seemed to be a gradual lessening of my fatigue, and now ov
  5. Peggy, so sorry you've had such a time these past months, hope this surgery will greatly relieve your symptoms. I had a fundoplication 3 years ago which stopped all my horrible burning-on-the-inside and aspiration attacks. Yes, recovery from the surgery was rough and a new and different way of eating was an adjustment, but well worth it as a trade for the reflux. Sounds like your doctor has researched your situation fully and that the gastric bypass will be your best chance for a great result. I'll keep you in mind next week too, wish you the best for a speedy recovery! :emoti
  6. Hi Mando, sorry to hear of your painful flare up, I can empathize as well as I've suffered for years with first, the shoulder pain, starting in my early 40's, then the hips joined in at around your age. I think it's part of the connective tissue disease (reminds me of a song that has a line "I'm too young to feel this old"!) I can't take the normal NSAIDs either because of esophageal issues, but am on a Cox-2 inhibitor (a newer form of NSAID which has supposedly less GI side effects) - have taken it for a few years now without recurrence of my esophageal ulcers (but I did have a fundoplic
  7. I'm afraid I have to echo Craig's sentiments. The SSDI is not for the faint of heart; it's a long, frustrating process, almost impossible for an ill person to handle alone, and takes so long to be approved that most anyone without resources such as long term disability insurance, or a hefty savings account, would be bankrupt before they see any SSDI check! Before I applied, I researched SSDI thoroughly as to requirements, the documentation I would need, had the backing of 3 of my doctors (primary, rheumatologist and pulmonologist), had numerous testing results, xrays, multiple surgeries,
  8. Hi Susie, so glad to hear you've recovered from the surgery and the after effects so quickly! I'm another member of the gallbladder-less club, welcome! After I had mine out, I wondered why in the world I waited so long to have the surgery, soooo much better than those nasty GB attacks! Take it easy for the weekend, and hope you'll be as good as new very soon! Hugs, Red
  9. Sweet, so sorry you're going through all this! Do you have any family or close friends who are helping you cope? I've had high resolution CTs yearly since my diagnosis in 2008. First 2 were normal, then over 2009/2010 winter I developed shortness of breath and chest pain; I had H1N1 flu then pneumonia. The SOB continued after recovery, but I was told it was residual asthma and inflammation from the infections. My April 2010 CT was again normal. By Dec 2011, I had worsening lung symptoms and developed numerous lumps on my elbows and fingers, was told first they were calcinosis, then whe
  10. We have weathered the storm here in Upstate New York, but the aftermath is devastating in some areas. Personally, I fared very well, our neighborhood is at a somewhat higher elevation - we got TONS of rain -- torrential, drenching rain for 24 hours straight -- but we did not get the damaging winds that were predicted, and did not lose power in my immediate area. Upstate, along the Hudson and Mohawk River Valleys and other low level lands are major flooding issues and power outages estimated at 100,000 homes and businesses (upwards of 1 million without power including NYC). Many roads and
  11. Thanks for the well wishes, we may need them!! I'm in Upstate NY, it is around 3 pm Saturday as I write this - there is a very eerie silence outside, sun still shining but through hazy clouds, no wind. Very few birds at my feeders all day, and no sign of squirrels or chipmunks since yesterday - very unusual! The animals sure know something is coming. My dogs are getting restless too. Not worried about flooding in my area, but there is definitely potential for wide-spread power outages. Predicting sustained winds of 40 mph with gusts to 50-60 mph here. A little worried about not havin
  12. Hi, hope Gareth is recovering nicely and that the surgery takes care of his pain. I had gallbladder-like attacks for years, but ultrasounds were always normal. Finally had a HIDA scan which showed dysmotility of the gallbladder, had the cholecystectomy, and never had another attack, thank goodness! Surgeon said my gallbladder was large and filled with sludge. Wasn't diagnosed with sclero til years later, but my rheumatologist thinks the gallbladder dysmotility was an early symptom of the scleroderma. I'm in upstate NY, I personally didn't feel the earthquake, but my husband's workp
  13. Hi Susieq, It's nice to hear from you, hope things are going okay for you. Thank you for the hugs! I was diagnosed in 2008 with sine, after about 10 years of joint pain, fatigue, carpal tunnel symptoms, and GI dysmotilitys and reflux. I had a fundoplication the same year, and have had bilateral release surgeries for carpal tunnel over the past couple of years. It had been progressing very slowly and chronically for years, it seemed. Things went sour Nov 2009, when I came down with H1N1 flu, then pneumonia and was on antibiotics and prednisone for 4 months. My lungs never did feel
  14. Thanks for all your support, I really appreciate it! hot :emoticons-group-hug: for your all! I do enjoy a good pity party now and then, but like to keep them short and sweet, am ready to face things and see where my journey goes from here. Yesterday went ok, nurses were a bit concerned when my O2 sat was only 95% just sitting, but it came up promptly to 99% on oxygen. And yes, fortunately, doc did the upper scope first, lol -- or at least he said he would, don't remember any of it :emoticons-yes: for conscious sedation! Doc said he biopsied the "irregular Z line" and a polyp h
  15. Miocean, this is truly wonderful news! :emoticon-congratulations: Enjoy your doctor-free vacation. I can't think of anyone who deserves it more! :emoticons-line-dance:
  • Create New...