Cystic Fibrosis Forum (EXP)

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  1. J

    Ataluren - is here someone in the study - can you PM me?

    Hi, I am just wondering if someone in the forum is in the clinical study for Ataluren (PTC 124). Can you PM me your experiences, thanks.
  2. J

    Ataluren - is here someone in the study - can you PM me?

    Hi, <br /> <br />I am just wondering if someone in the forum is in the clinical study for Ataluren (PTC 124). Can you PM me your experiences, thanks.
  3. J

    Stenotrophomonas maltophilia

    Hi I cultured it since 1997 to 2003, very resistant strain, only one oral antb. was not resistant, but I had allergy reaction on it in my childhood. My CF clinic also told me that I don't really need to stress about it. But I was feeling worse and there was much more mucus to cough up. In 2004 I...
  4. J

    Stenotrophomonas maltophilia

    Hi I cultured it since 1997 to 2003, very resistant strain, only one oral antb. was not resistant, but I had allergy reaction on it in my childhood. My CF clinic also told me that I don't really need to stress about it. But I was feeling worse and there was much more mucus to cough up. In 2004 I...
  5. J

    Stenotrophomonas maltophilia

    Hi I cultured it since 1997 to 2003, very resistant strain, only one oral antb. was not resistant, but I had allergy reaction on it in my childhood. My CF clinic also told me that I don't really need to stress about it. But I was feeling worse and there was much more mucus to cough up. In 2004 I...
  6. J

    Stenotrophomonas maltophilia

    Hi I cultured it since 1997 to 2003, very resistant strain, only one oral antb. was not resistant, but I had allergy reaction on it in my childhood. My CF clinic also told me that I don't really need to stress about it. But I was feeling worse and there was much more mucus to cough up. In 2004 I...
  7. J

    Stenotrophomonas maltophilia

    Hi I cultured it since 1997 to 2003, very resistant strain, only one oral antb. was not resistant, but I had allergy reaction on it in my childhood. My CF clinic also told me that I don't really need to stress about it. But I was feeling worse and there was much more mucus to cough up. In 2004 I...
  8. J

    Which clinical trial are you in?

    Hi everyone , thats great topic, good job. I am going to do first screening for the VX-770 study in august-october , I will let you know. I am doing daily 55-65 ml HTS, 2,5-5ml Pulmozyme, now withouth inhaled antb. FEV1 - 80%, Kreon 25 x 25000 daily. I am really looking forward to participate...
  9. J

    Which clinical trial are you in?

    Hi everyone , thats great topic, good job. I am going to do first screening for the VX-770 study in august-october , I will let you know. I am doing daily 55-65 ml HTS, 2,5-5ml Pulmozyme, now withouth inhaled antb. FEV1 - 80%, Kreon 25 x 25000 daily. I am really looking forward to participate...
  10. J

    Which clinical trial are you in?

    Hi everyone , thats great topic, good job. I am going to do first screening for the VX-770 study in august-october , I will let you know. I am doing daily 55-65 ml HTS, 2,5-5ml Pulmozyme, now withouth inhaled antb. FEV1 - 80%, Kreon 25 x 25000 daily. I am really looking forward to participate...
  11. J

    Which clinical trial are you in?

    Hi everyone , thats great topic, good job. I am going to do first screening for the VX-770 study in august-october , I will let you know. I am doing daily 55-65 ml HTS, 2,5-5ml Pulmozyme, now withouth inhaled antb. FEV1 - 80%, Kreon 25 x 25000 daily. I am really looking forward to participate...
  12. J

    Which clinical trial are you in?

    Hi everyone , thats great topic, good job. <br />I am going to do first screening for the VX-770 study in august-october , I will let you know. <br /> <br />I am doing daily 55-65 ml HTS, 2,5-5ml Pulmozyme, now withouth inhaled antb. FEV1 - 80%, Kreon 25 x 25000 daily. I am really looking...
  13. J

    type of portable compressor to use with TOBI

    I use Eflow rapid (eu version) for all -TOBI, HS and Pulmozyme, the european version is approved to all those meds... on batteries I can do about 120 minutes of inhalation...
  14. J

    type of portable compressor to use with TOBI

    I use Eflow rapid (eu version) for all -TOBI, HS and Pulmozyme, the european version is approved to all those meds... on batteries I can do about 120 minutes of inhalation...
  15. J

    type of portable compressor to use with TOBI

    I use Eflow rapid (eu version) for all -TOBI, HS and Pulmozyme, the european version is approved to all those meds... on batteries I can do about 120 minutes of inhalation...
  16. J

    type of portable compressor to use with TOBI

    I use Eflow rapid (eu version) for all -TOBI, HS and Pulmozyme, the european version is approved to all those meds... on batteries I can do about 120 minutes of inhalation...
  17. J

    type of portable compressor to use with TOBI

    I use Eflow rapid (eu version) for all -TOBI, HS and Pulmozyme, the european version is approved to all those meds... on batteries I can do about 120 minutes of inhalation...
  18. J

    How do you view youself?

    Hi, with my last FEV 1 95% I feel mild, but I have to work hard for it. My inhalations take more than 4 hours a day, I am doing exercise every day... I.V. twice a year, I am PI, col. Ps au.
  19. J

    How do you view youself?

    Hi, with my last FEV 1 95% I feel mild, but I have to work hard for it. My inhalations take more than 4 hours a day, I am doing exercise every day... I.V. twice a year, I am PI, col. Ps au.
  20. J

    How do you view youself?

    Hi, with my last FEV 1 95% I feel mild, but I have to work hard for it. My inhalations take more than 4 hours a day, I am doing exercise every day... I.V. twice a year, I am PI, col. Ps au.
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