I guess I'd just ask everything you asked here. I just had a great discussion with our sons cf doctor re antibiotics and her thoughts on treating to beat down staff when no issues. I had researched a lot before but in a minute she was able to answer my questions and thoughts with the data and scientific reasoning so well. Hopefully your doctor can do the same with the types of questions you posed.
I'm sorry, it is just impossible for me to believe that anyone with CF, who is 31 years of age, doesn't know the difference between ORAL and IV antibiotics or the benefits thereof. I can take you to any CF floor of any Children's Hospital in the US or Canada and every patient there will tell you all about a clean out.
FYI, my first dose of antibiotics was in 1948 (I was 8) when I had Scarlet Fever. Penicillin had just been approved.
It is too bad that the OP edited her post, the complete post was highly insightful.
I ask myself this question at times but slightly modified "what will lead me to do my first course of IV antibiotics". Getting to my age without needing them is a great testament to the treatments that have been developed (Tobi, Pulmozyme, HyperSal, Vest, etc) and the wonders of our medical science (and a bit of good fortune). But it also leads me to be just downright nervous regarding the severity of the infection or the degree of decline that will lead to an IV course.
I'm not really answering your question, but am noting that for whatever reason making that jump from Oral to IV can feel pretty challenging (at least for me).
thank you to those who gave feedback. Brief background:
It has never been suggested that I do IV antibiotics before until a week ago-when my lung function had declined from my previous visit. Was unable to do them right away as I was leaving the country for a week. Now I have a return appointment today and, if brought up, I want to ask the right questions to see whether the IV course would be the most appropriate for me. I have never taken IV antibiotics for an exacerbation before, nor do I cycle on Tobi or other inhaled meds and the last oral meds I had were over six months ago. So I am not used to taking a lot of antibiotics nor is my lung function considerably lowered.
Maybe be a more appropriate question is-what is the threshold at which IV becomes the best course of action? I don't feel-given my background that it is necessarily best option. Personally I feel a similar outcome can be reached by a variety of methods-oral/IV etc and that one does not necessarily trump the other.
This is was the gist of my original post-which I amended in the hope bill would stop bullying me. However it didn't work- so here is the back story on the IVs.
Bill please stop replying. I do not feel anything constructive is intended from your posts-thank U.
I'm sorry I can't give personal info as our son is only five and we haven't had the issue. A couple thoughts I do have...I think you mentioned the goal or eradication....were you also culturing something new or that the susceptibility to the meds changed? My understanding is that for some bacteria you want to hit it hard to get rid of it ASAPbefore it becomes mucoid...I think that's the word. So maybe ask about if something changed re the culture...I review each one and specifically if the susceptibility to antibiotics has changed...we can access easily on line the entire history. Maybe try to do before the appointment so you can discuss that element as well. I also think that some doctors suggest IV ones so you are in the hospital setting for more intensive treatments and to assure compliance...maybe if it's a new doctor for you that is one of their concerns and maybe discuss that. Good luck!
If you are not sure what to do, I think it would come down to how much you trust your doctor. I don't feel like I can give you any real advice other than that without knowing what your symptoms are, FEV drop, what you're culturing, what orals you've been on before, suceptibility, etc, etc. It's good to think for yourself and question what is said, but if your level of knowledge does not allow you to make an educated decision, I'd go with what the doc says unless you have good cause not to trust them. If you have never been on IV's before and you are in your early 30's, you must have a pretty mild case? Do you know what your mutation is? Oh, and there really is no "threshhold"-- it depends on your history and what you're growing down there....some bugs just need IV meds to make an impact.
I'm 35 and I've only done Ivs once and it was because I had a severe case of pneumonia. Before that, I was all about oral antibiotics very sporadically. So it took a monster infection to really make me need them! And by monster, I mean I went from having 100% lung function to 45% and barely being able to walk a block without getting winded (I guess that's what pneumonia is!) A chest x ray also looked terrible, my heart rate was way too high, and I had a fever that wouldn't quit. In my experience, doctors have always wanted to hold off "until I really needed them" and that day finally came this past winter. I think it's great to avoid antibiotics as long as you can! It's just when you get your butt kicked that you have to bring out the big guns. I think had I not had these symptoms and I just had a drop in lung function, was feeling low energy, or was just feeling "blah" we wouldn't have gone the IV antibiotics route but would have explored other options.
FYI I'm back to 100% lung function and haven't had an incident since
sent you a pm. I shouldn't have responded publically and I apologize for derailing the original thread.
i think the threshold for IVs vs. oral antibiotics differs for individual patients. Usually for me I'll try to up my airway clearance if I feel something coming on or notice any type of change. If that doesn't resolve the issue within a few days I may email my doctor and see if there's an oral abx they want me to try. If yes, I do the oral abx for 2-3 weeks and if that doesn't help we'll reevaluate and maybe try IVs. If the oral are a no go to start with and I'm feeling really badly really quickly and my PFTs drop then I'll usually go straight to IVs. I had my first IVs though when I was 6 so they have been a pretty routine part of my care. If you haven't done oral abx in a long time and are worried about doing IVs I would talk to your doctors. I'm hopeful they would listen to your concerns and you could come up with a good solution for treatment together as a team.
Thank you all for the replies, they were extremely useful, even though I was not very clear or detailed with my questions. Good news though. I went and he did not even suggest IVs. My lung function was practically back to baseline without changing much except more airway clearance etc… He was happy as a clam. I did culture Pseudomonas, which I typically don’t , so we are going in with Levaquin and a round of Tobi.
Welshwitch-I saw your posts related to your pneumonia and I am so glad you are doing better. Your story is helpful for those of us who have to make that leap to try IV antibiotics for any reason.
Jaimers: I am glad you said that for you, you usually try oral antibiotics first and then go to IVs-I would be more comfortable with that approach. It was just so out of the blue to me that he came out with suggesting IVs first, and then I was out of the country, it was all overwhelming.
Allaboveislove: That’s what I was wondering (do we need to to hit it with all we have or is it just a small exacerbation), and it is a new doctor for me as well, so they don’t know me or my history as well as my old doctors.
Imported_Momto2: The doctors are new (it is an accredited clinic) so I am more wary than usual since they aren’t as familiar with my particular case. Yes I am mild. Double D508 though, oddly enough-the doctors love to comment on that fact.
I am so glad you all chimed in though. It definitely helped me to see what I might do in the future in this situation.
Every doctor has a different style. I am very lucky to have a doctor who is honest and open with me, as well as take the time to educate me on the pros and cons to every situation.
Generally speaking, iv antibiotics are stronger and work a little better than oral since it enters directly into the blood stream. They are most often used for tune ups, and can be administered at home if needed.
In your case though (based on your response) I predict it was more fear/worry than necessity, but like everyone above me posted please have a conversation with your doctor about IV antibiotics and what specifically your concerned about. Side effects, scars, methods of delivery, etc.
If you ever have any doubts about your medical care you shouldn't hesitate getting another opinion.
NO doctor has ALL the answers. Also, medicine is an art as well as a science. Are all good artists the same?
As for IV antibiotics, they can be administered in a MUCH higher dosage. As has previously been stated, they are usually used only after oral antibiotics have failed, or to attack a particularly bad infection.
I wish that you had posted your PM here in public. Having said that, please be assured that I have a reasonable education and a serious understanding and control of the English language. I read the ORIGINAL OP three times before my three word reply. I understood the post and I understood my reply. As I said earlier the post that I replied to was long and inconsistent within itself. I did not reply to the one line post that now remains.
Now I understand that the OP didn't like my three word question but as a moderator I would have hoped that you would be more concerned with her personal attack than the "tone" of my question.