Search results

  1. 4

    Bleeding - Rifampin???

    I am currently on Rifampin, ethambutol and Azithromycin to treat MAC. Over the last two weeks I have had blood in my stool 3 times, bright red. Rifampin is known to cause bleeding as a side effect. Has anyone experienced this while on rifampin? Did you discontinue it right away? Thanks for your...
  2. 4

    Ceftriaxone allergic reaction

    I was on IV Ceftriaxone for two weeks. The first week I was doing ok. The second week I had a very bad reaction to it: fever over 102, chills, leg pains, body rash, etc....I would feel this way about two hours after I infused myself. My bloodwork showed my white blood cell count as low as well...
  3. 4

    Kalydeco - what's different once you are on it?

    I have a question for those of you on Kalydeco. Since you have been taking it, what has changed in terms of your daily airway clearance therapies? Are you still doing them a couple of times daily or have you been able to reduce them? What else has changed in your day-to-day care of your cf as a...
  4. 4

    MAC is back!

    I am almost 11 months into my MAC treatment. All was going well. No MAC cultures for the entire time until yesterday. I was told that it grew again! Very, very disappointing. Next month I am meeting with my infectious disease doctor to discuss next steps. I am currently taking rifampin...
  5. 4

    Chronic staph problems

    Staph continuously gives me problems. I culture it every time I give a sample. I also culture MAC (being treated for it the last 9 months; have not cultured it since I started treatment) and HI. I frequently battle infections. Sputum green all the time. I take oral antibiotics (I've taken a...
  6. 4

    Lingula pain

    I was diagnosed last year with a lingula that was collapsing and that is plagued with bronchiectasis. When it flares up it causes a good deal of pain on my left side, right under my left chest. It can be quite annoying and sometimes can make it difficult to beathe. The pain had disappeared for a...
  7. 4

    Flu after getting the vaccine

    In early September I got the flu shot. This year's vaccine covered four different strains. I was doing ok, then this past weekend I came down with a very high fever, almost 105F, that came on quickly. In short, I was hospitalized for two days. In the hospital they told me that I had gotten the...
  8. 4

    2013 Boomer’s Cystic Fibrosis Run to Breathe 10K

    Curious to know how many of you are running in this on July 20th in Central Park. I'm in.
  9. 4

    Starting treatment for MAC: few questions

    I will be starting my treatment for MAC in just a couple of days and I wanted to get your experiences on how your treatment has gone or is going. What meds were you prescribed? (I will be taking Zithromax 600 mg Mon, Wed, Fri; Rifampin 600 mg daily; Ethambutal 1200 mg daily.) how well have you...
  10. 4

    Staph problems

    I was wondering if I could ask for some help from fellow CFers that suffer from staph. Basically, these past 8 months I have been having quite a bit of problems with it (I also culture MAC, and haemophilous Influenzae. Both intermittently. The Staph has cultured every single time I give a...
  11. 4

    Asthma doctors

    I wanted to know if any of you know an excellent asthma specialist in the new york city area. The cf clinics can only do so much with severe asthma issues. Need to have someone who really understands asthma and all it's complications. Any suggestions would be appreciated. thanks
  12. 4

    L206w

    Anyone else out there have the L206w mutation?
  13. 4

    Brown blood

    I had a bout of hemoptysis this past Sunday which was straight blood, bright red. It got under control that evening after about 30 minutes and has been dissipating since. However, I'm still coughing up a little bit of blood 4 days later and the color is more of a brownish hue. Is this just...
  14. 4

    Steroid inhaler induced laryngitis/hoarseness with use of Advair

    I started using Advair about two weeks ago and have been diligent in rinsing after each use. I also use a spacer to administer the doses. I now find my voice to be really hoarse and is coming in and out over the past 4 days. Is this to be expected with the use of advair? Any similar experiences?
  15. 4

    Pancreatic Sufficient for how long?

    I am currently pancreatic sufficient but I am curious to know how many of you started out pancreatic sufficient and then became insufficient over time? How long were you PS and when did you become PI? Were there subtle signs before you got formally tested/received a formal diagnosis?
Top