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  1. 4

    Switch From Kalydeco to Symdeko

    I’ve been on Symdeko for almost 4 weeks now. I’ve had no side effects from it. All is well on it. Previous to that I was on Kalydeco for about 9 months. I’ve not seen any notable difference after I’ve made the change to Symdeko. My PFTs went up a few points initially on Kalydeco then went down...
  2. 4

    Low grade fevers and swelling

    I have been using Cassia, cinnamon and oregano. I rotate between them, using two of the oils every night. Just a drop or two on the bottom of my feet. I believe this has really helped. My cf doctor encourages me to keep doing the oils, even with just starting Kalydeco two weeks ago. Hope this...
  3. 4

    Low grade fevers and swelling

    Also, I did see a rheumatologist and immunologist during that time period. They ruled a lot of stuff out.....
  4. 4

    Low grade fevers and swelling

    I have cultured MAC. About a year and a half ago I was having similar issues, low grade fevers up to 101 or so, and swelling of joints, etc...very painful. It was an arthritic response throughout my body. It could very well have been Mycobacterium Avium complex immune reconstitution inflammatory...
  5. 4

    Painful rash, joint pain, swelling

    I also experienced similar symptoms in the past year or so. I had a nasty rash all over my body which was probably due to an allergic reaction I was having to my MAC antibiotics. I would start the meds and shortly thereafter, I would breakout in a very painful rash. In addition to this, I was...
  6. 4

    Bleeding - Rifampin???

    Just FYI. I had a colonoscopy today. Have some small internal hemorrhoids that were responsible for the bleeding. Everything else was ok. Thanks for the responses.
  7. 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...
  8. 4


    Mep, I want to give you my experience with MAC. I am currently on my second round of MAC treatments. My first treatment of Rifampin, Ethambutol and Azithromycin lasted for 12 months. Prior to my first set of treatments I had recurring low-grade fevers, lethargy. I was wiped out. My pfts went...
  9. 4

    anxious about not feeling good despite good numbers?

    I treated MAC for 12 months starting in June 2013. I had negative cultures for 10 months and then I had a positive one while I was still on the treatment (rifampin, ethambutol, azithromycin). We stopped the treatment 2 months later to see how I would respond. A few months later I started...
  10. 4

    anxious about not feeling good despite good numbers?

    I see that you have cultured MAC before. Have you ever tried to treat the MAC, or are they just taking a wait and see approach? MAC can make you feel very sluggish, tired, like you don't want to get out of bed, low grade fevers (at times), night sweats (at times)......I've suffered with MAC. I'm...
  11. 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...
  12. 4

    First PICC line ever -- panicking

    I had my first PICC line in January. They put it in while I was in the hospital for 5 days. I had it in for two weeks and then had it removed once I finished my IV course. I did not know what to expect, but looking back it was not too bad. I went to work with it. The worst part was the...
  13. 4

    What do you CF Centers say re exercise?

    My doctor said that exercising is the best medicine she could give me. Of course, I take all my meds and I am totally compliant with my treatments, but I would say that exercising is my key to staying healthy. I too was diagnosed as an adult but I exercised throughout my life and maybe that is...
  14. 4

    Rest in Peace, Barbara

    I am so very sorry for the loss of your very dear friend. Please pass on our condolences to the family.
  15. 4

    Anyone have L206W and R347P mutations?

    Jessica, you can find out more information on different types of mutations on the following website
  16. 4

    Anyone have L206W and R347P mutations?

    Jessica, GoryLori brings out very good points related to L206w. I have that mutation along with DF508, which is the most common mutation. I was diagnosed at 41 years old. I am 44 years old now. I probably should have been diagnosed in my late 20s, but doctor after doctor missed the diagnosis...
  17. 4


    I was treated for MAC for one year after I had been dealing with it for more than 6 months. The year or so prior to the start of treatments, I had 3 very bad bouts of hemoptysis. Once I started the regiment, the hemoptysis calmed down. Unfortunately, the MAC has returned, and the amount of...
  18. 4

    Late/mild diagnosis?

    I think those on this thread would find this article very interesting.
  19. 4

    Staphylococcus aureus Sharing Nutrients to Increase Virulence during Infection

    Very interesting. Thanks for sharing
  20. 4

    How to explain CF to your coworkers...or do you?

    I've worked in a professional office environment for the last 23+ years, so I can appreciate your concerns. I often get the comment, " are you ok?", " do you want a cough drop?", etc....sometimes I am in my office, coughing away and someone walks in. Sometimes, I am in a meeting and I have to...