What's new
Cystic Fibrosis Forum (EXP)

This is a sample guest message. Register a free account today to become a member! Once signed in, you'll be able to participate on this site by adding your own topics and posts, as well as connect with other members through your own private inbox!

Feeling Great - - except for this weird 103 degree fever

B

bethylove

Guest
<span>I just got off a two week course of minocycline when I started Cayston. They overlapped for 3 or so days. Around Day 3/4 I started to feel AMAZING. I had been 100% compliant for over 3 weeks and it was feeling awesome. Especially since I added cayston to the mix.<span>Around day 7 or so, I woke up with a low grade fever but it didn't feel like a fever. So much so that I thought my thermometer was broken and tried a second one. (I'm currently charting my cycles so I take my BDT each morning) and again it was a low 99. 5 fever.<span>I went on through the day and it spiked around 8pm or so up into the 101 range. Again, no other symptoms - not even really that chilled. I didn't feel like I had to bundle up, I wasn't flushed, I wasn't even all that tired. No aches, nothing. Even my fiance was surprised when I told him I had a fever. It was definitely not your 'classic fever.'<span>Since that day (thursday low grade all day , friday 101) I've had consistant fevers starting at 99.5 and then spiking rather quickly and LASTING super long. Even with 400 mg of iburophen. Saturday night I had two fevers going up to 103. 2 that lasted for hours! They'd break, and I'd feel great again.<span>I stopped Cayston after my 103.2 (highest) fever sunday early early AM (think 3am) so I didn't do any cayston Sunday or Monday. Sunday I felt great right up until 7 when I got that low grade, that spiked quickly into a higher fever. HOWEVER, it did not go as high. Only to 101.3. Also , within 20 minutes of iburophen it came down.<span>Monday- no fevers so far, feeling a bit tight in the chest (usually happens when I stop cayston).<span>BUT my doctors don't seem to think that it's cayston causing the fevers solely based on the fact that "less than 1% of adults experienced fevers as a symptom" --- but that half a percent had to exist. I could be that lucky half a percent right??<span>Am I crazy here? They sent me to my PCP (which is something I don't have set up yet. It hasn't been a year since my last physical so when we moved I put it on the back burner and never got around to seeing a new PCP) and after calling a few places to see if I couldn't be squeezed in as a new patient/sick patient I've given up.<span>Has anyone else had a similar symptom when first starting cayston? Did your doctors tell you it wasn't cayston? Any advice?
 
B

bethylove

Guest
<span>I just got off a two week course of minocycline when I started Cayston. They overlapped for 3 or so days. Around Day 3/4 I started to feel AMAZING. I had been 100% compliant for over 3 weeks and it was feeling awesome. Especially since I added cayston to the mix.<span>Around day 7 or so, I woke up with a low grade fever but it didn't feel like a fever. So much so that I thought my thermometer was broken and tried a second one. (I'm currently charting my cycles so I take my BDT each morning) and again it was a low 99. 5 fever.<span>I went on through the day and it spiked around 8pm or so up into the 101 range. Again, no other symptoms - not even really that chilled. I didn't feel like I had to bundle up, I wasn't flushed, I wasn't even all that tired. No aches, nothing. Even my fiance was surprised when I told him I had a fever. It was definitely not your 'classic fever.'<span>Since that day (thursday low grade all day , friday 101) I've had consistant fevers starting at 99.5 and then spiking rather quickly and LASTING super long. Even with 400 mg of iburophen. Saturday night I had two fevers going up to 103. 2 that lasted for hours! They'd break, and I'd feel great again.<span>I stopped Cayston after my 103.2 (highest) fever sunday early early AM (think 3am) so I didn't do any cayston Sunday or Monday. Sunday I felt great right up until 7 when I got that low grade, that spiked quickly into a higher fever. HOWEVER, it did not go as high. Only to 101.3. Also , within 20 minutes of iburophen it came down.<span>Monday- no fevers so far, feeling a bit tight in the chest (usually happens when I stop cayston).<span>BUT my doctors don't seem to think that it's cayston causing the fevers solely based on the fact that "less than 1% of adults experienced fevers as a symptom" --- but that half a percent had to exist. I could be that lucky half a percent right??<span>Am I crazy here? They sent me to my PCP (which is something I don't have set up yet. It hasn't been a year since my last physical so when we moved I put it on the back burner and never got around to seeing a new PCP) and after calling a few places to see if I couldn't be squeezed in as a new patient/sick patient I've given up.<span>Has anyone else had a similar symptom when first starting cayston? Did your doctors tell you it wasn't cayston? Any advice?
 

Havoc

New member
where are they getting the 1%. I just looked this information up for someone the other night and looked just now to make sure. 13% of patients in the trial reported pyrexia as a side effect (with TID dosing). Although, 103 is a bit high.
 

Havoc

New member
where are they getting the 1%. I just looked this information up for someone the other night and looked just now to make sure. 13% of patients in the trial reported pyrexia as a side effect (with TID dosing). Although, 103 is a bit high.
 
B

bethylove

Guest
I have no idea where they're getting the 1%. I understand that fever is seen more so in children than adults (says so right in the packet received with cayston) I tried to do a search on google scholar and the only full study I found 43% of people tested (out of 186) reported pyrexia. Seems a little iffy that they brushed it off so easily.

Do you happen to know where you found that study? I'd love to look at it.
 
B

bethylove

Guest
I have no idea where they're getting the 1%. I understand that fever is seen more so in children than adults (says so right in the packet received with cayston) I tried to do a search on google scholar and the only full study I found 43% of people tested (out of 186) reported pyrexia. Seems a little iffy that they brushed it off so easily.

Do you happen to know where you found that study? I'd love to look at it.
 

Havoc

New member
I was looking at the prescribing info on www.rxlist.com. Best site ever for PK information.
 

Havoc

New member
I was looking at the prescribing info on www.rxlist.com. Best site ever for PK information.
 
Top