Strange response to antibiotics, anyone else experience this?

[mom2two]

hey there.

So about a week ago I started on IV Meropenem and oral Levaquin. Levaquin didn't agree with me and I spend the first two days with waterfall diarrhea and the next couple of days after that vomiting. Joy and rupture. I switched to IV Levaquin and all was well. So.....I am a person who takes my FEV1 and FVC at home 3x a day and charts it. (It's fascinating to watch the trends). The first 4 days of the antibiotics, when I was so close to dehydration and could barely eat, my FEV1 and FVC numbers actually dropped. No huge surprise there, my body was under a huge amount of stress. However, the last fews days, it's either been holding the same or showing downward trend readings, not coming back up. What??? However, my sats are greatly improved, going from 88-91 range readings during the day to 91-94! So a noticable improvement there. But why is my FEV1 and FVC not changing along with the sats? Is this due to the severe restrictional disease that I have? (along with the obstructive CF) Anyone else have the bodily response of increasing sats and decreasing FEV1/FVC? It just seems a little weird to me. I fully expected my PFT values to go up at this point. Do I have to give it more time, let the antibiotics help the smallest areas and work on up?

 

[stephen]

It's usually taken me weeks after stopping the IV antibiotics before bouncing back

 

[Melissa75]

I lost my post a couple of times because my phone screen was sweaty or something

Anyway, I was trying to say that an improvement in breathing lags for me. I get past the extra green mucus and fever of an exacerbation, but even while still on the tail end of antibiotics, I'll be tight and wheezier than ever with a cough that sounds like an engine turning over. Then I segue into a cold virus. Then I might feel completely better for a bit. Rinse. Repeat.

I hope you feel better soon!

 

[kenna2]

It's quite common for PFTs to fall or remain unchanged while on IV meds. I've had mine fall halfway through week 3 of treatment. Very frustrating, however, they usually bounce back. Your system has to recover from the hit. What is important is how you feel. If you're feeling better then you know things are working. I know I'm a person who when I feel like crap, my numbers are great and vice versa. Keep your chin up. You'll get back at to where you need to be.

 

[LittleLab4CF]

mom2two,

Thanks for giving me a new descriptive and a great big smile. "Joy and rupture" indeed. I pay as much attention to my gut as you spend time documenting and studying your lungs. My lungs are fine. I still contract pneumonia 2-4 times a year. As I understand it, CF lung infection can be from aspirating food or the chronically infected post nasal discharge and/or from having CF lungs. CF lungs have activated mucus glands that produce thick, dessicated mucus, sometimes excessively. This unmoving gel is ideal medium for infection.

Lacking the thick lung mucus and taking antibiotics like Levaquin and Cipro for lung infection and other infections, I notice an almost allergic reaction is going on towards the end of the course. My rescue inhaler usually sets idle except for mould season and part of an antibiotic's course. I've raised the issue with more than one Doctor. The best answer I've been offered is possibly a reaction to the antibiotics but definitely a reaction to the dead bacteria. Just because they have been blown apart, until the bacteriophages are happy that the bacterial debris has been culled, they are congesting the area of infection and the blood stream/lymphatic drainage.

An interesting experiment would be to super hydrate and take antioxidants and milk thistle (detoxifiers). As for the problem with oral antibiotics, you may have to accept the fact that you have to go with IV delivery. Sorry.

LL

 

[mom2two]

Thanks everyone for the feedback. In the past, I've always felt better within a few days of starting the IV's, so this is a whole new ball-o-wax for me. It's reassuring to hear that progress can lag. I wont fret so much about it now! LIttlelab- yes! It does seem like my asthma is worse the longer I stay on the IV's. I have noticed before that when my lungs are not congested, the asthma is horrid. When they are congested, its much better! I think a thin coating of mucous helps protect them from outside influences and bronchospasms. Thats always been my working theory anyhow. Havent thought about the dead bacteria leading to a rxn, that will definitely be food for thought.

I dont mind about the IV delivery. I have a port now and am a very happy camper with it. Her name is "portia"

 

[windex125]

Good to hear your feeling better I just did a round of meds as well Nov 1-10 it was supposed to be Nov1-15 but on the 11th I woke up covered in hives from Ceftaroline colonizing MRSA and of course my MAC so I had to cut it short the hives took abt 4-5 days to clear they were all over my chest and back area, but did not really itch so much, which was a relief. Remained on saline 3x day for 2 days to flush system - now back on oral Bactrim. I do not track my FEV ever - I always go with the way I'm feeling and the needle was removed on Nov15th and gradual got strength back, but as usual had bleeding a week after stopping the IV's so doubled on vitamin K and after abt 6-7 days that cleared as well. So I am feeling better ever day. Also my dry 2 hr. dry hacking every day has subsided which more than anything was the worse to deal with. Hope everyone enjoyed there Thanskgiving Many Hugs

 

[heffbelly]

Greetings!

I just want to make sure you are taking probiotics. They help my son quite a bit.
Thanks for your posts!

 

[mom2two]

As an update, the IV meds never really did help my FEV1 or FVC. They stayed fairly stationary for weeks until I started on Cayston and then they did the usual immediate jump upward from about 21% FEV1 to about 26%. The increase in sats dropped almost immediately after I stopped the IV. My sinuses however, were wonderful for about 3 weeks total, then back to same old. I find it very interesting that IV meds seem to have no real impact on FEV1/FVC and inhaled meds are almost instant. Although.....by week 3 of Cayston, I start to dip and fall as the bronchospasms increase. So its 3 weeks of great on Cayston, followed by 5 weeks of ick. Wash, rinse, and repeat. Cayston has been my godsend. I wish I could tolerate TOBI.

Heffbelly, I've found that simple yogurt 3x/day seems to do a great job most times. I've tried the pill probiotic route before and didnt get satisfactory results.

 

[jricci]

Have you ever tried inhaled Colistin? I alternate Colistin with Cayston every month. For me, my Colistin months are usually better than my Cayston months. I know you have a lot of issues with reactive airways, so you may not be able to tolerate it, but it might be worth a try. It’s a bit of an inconvenience because it takes long and I have to mix it myself using a syringe with sterile water but I know some pharmacies premix it for you. If you do decide to try it, you may want to mix it yourself though, making it more dilute might help with your reactive airways. Colistin can be used with e-flow device but the metal head is different from the one used with Cayston. It's called the "Trio" metal head for Colistin. I use my regular compressor and pari nebulizer though. It does take a lot longer (about 15-20 min) but for me the e-flow didn't seem to be as effective, but I know others have done fine using e-flow and Colistin.
I’ve also heard of others using inhaled ceftaz or amikacin, but I’ve never tried either of them.
Just checked on the CFF website and it looks like inhaled Levofloxacin is still in the pipeline. Mixed results in studies- It failed its endpoint in reducing or delaying pulmonary exacerbations but in another study, it showed that it was not inferior when compared to TOBI. It's been approved for use in other countries, so maybe that will be an option one day.

Hoping you can find an answer to somehow extend your good weeks and lessen your "ick" weeks.
I hope you’re currently on your one of your good weeks so you’re feeling well for the holidays.