It will be two years in October that I have been on kalydeco. I have the G551d mutation. However, I have not benefited in terms of improved Pft's or weight. In fact, I struggle more to keep them up! Over the past year I have run a low grade fever off and on (currently I have had a fever just below 100 from mid morning til later afternoon). I have grown the same bugs (pseudo and alcalgenes) for over 20 years (I am 39) except for 2 positive rare MRSA cultures which have been clear for well over a year. Mycobacterium cultures have been negative. Recent Ct shows inflammation with enlarged likely reactive nodes no bigger than 2 cm. Of note, after I had my second child (6 months prior to staring kalydeco) I had a large pneumonia that wiped out my middle lobe. My Pft's now hang in the 60s as opposed to low 70's. If anyone has any experience or advice on this matter I would be grateful.
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Fever and kalydeco...would love your thoughts
- Thread starter Mg930
- Start date
I doubt it's helpful at all as I'm not on kalydeco or anything, but whenever I start getting those low-grade fevers off and on (like 99-100 every night or so but completely normal during the day,) usually means it's about time for IV antibiotics even if I'm not outright sick. Are you on any every-other-month antibiotics like TOBI or Cayston? Might be worth asking about.
J
jamest
Guest
Not kalydeco related but - I had a persistant low-grade fever for 2 or 3 years... eventually I got a scan of my head, and found that my sinuses were completely packed with aspergillus. After surgery to open additional 'windows' into my maxillary sinuses, that stuff drained out and I have been fever free since then (provided I rinse often). Now I grow MRSA in there, apparently. :/
Inflammation was definitely a symptom for me, I was popping ibuprofen constantly. While I had these fevers I was attributing it to anything and everything - med side effects, whatever. I would suggest not jumping to conclusions about the kalydeco, and keep an open mind about finding the actual issue (if possible).
Inflammation was definitely a symptom for me, I was popping ibuprofen constantly. While I had these fevers I was attributing it to anything and everything - med side effects, whatever. I would suggest not jumping to conclusions about the kalydeco, and keep an open mind about finding the actual issue (if possible).
Thank you for your input kmh beauty. Jamest---the aspergillus is interesting and not something that has been looked at. Were your reactionary blood levels high because of the aspergillus in your sinuses (I believe it is called beta glucan and IgE)? I have had the blood levels checked and those were negative. I did not know you could see aspergillus on a CT? I figured you would need a culture of your nares? I am definitely keeping an open mind and I even plan to get a lymes test next week (would be great if it was that simple). Looking back were there any other symptoms like pain in your sinuses or anything else? Thank you so much for sharing!
With the aspergillus in your nose, did you smell a weird smell in your nose? The smell gets stronger in the shower. I swear its the smell of bacteria or something. Its for sure in my nose because I always smell it. I just had polyps removed, smell went away, then back again.Not kalydeco related but - I had a persistant low-grade fever for 2 or 3 years... eventually I got a scan of my head, and found that my sinuses were completely packed with aspergillus. After surgery to open additional 'windows' into my maxillary sinuses, that stuff drained out and I have been fever free since then (provided I rinse often). Now I grow MRSA in there, apparently. :/
Inflammation was definitely a symptom for me, I was popping ibuprofen constantly. While I had these fevers I was attributing it to anything and everything - med side effects, whatever. I would suggest not jumping to conclusions about the kalydeco, and keep an open mind about finding the actual issue (if possible).