Hi guys. So, I was admitted for a tuneup on the 12th, was in house until the 16th and I've been doing the IV abx at home since. I'm on Ceftaz 3 times a day and Tobra once a day. I'm also on oral Septra and just started hypertonic saline twice a day. I'm on half an hour of vest three times a day, Xopenex twice or three times a day, Pulmozyme, and a bunch of vitamins and calcium supplements. I went in last Thursday for a follow up and my PFTs had dropped ten percent from admission. I'm going back in today and I'm not feeling good about what my numbers will be. Also, my joints are KILLING me today, which is a surefire sign for me that I've got something going on in my chest; my doctors and I realized that when I'm sick EVERYTHING reacts by becoming inflamed. That's gotten worse in the past 24 hours. I just feel terrible too. I'd love to blame it on the IVs, but I've been on this exact regimen before and by 2.5 weeks I was feeling awesome. Should I go back into the hospital? What can I do? I'm getting discouraged here. I cultured steno in the hospital culture. I also culture pseudo (have for 8-10 years).
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Not Feeling Better
- Thread starter ryry11
- Start date
Hi RyRy,
I am sorry that you are not feeling better yet. It can be very discouraging, especially when you are doing everything you can to get yourself better.
I hope after today's clinic, that your #'s go up , even a little bit. I dont know if going back in would change anything ..
Maybe there is something else going on that the drs. are missing ?? I would discuss that with them.
I hope you feel better very soon !
Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
I am sorry that you are not feeling better yet. It can be very discouraging, especially when you are doing everything you can to get yourself better.
I hope after today's clinic, that your #'s go up , even a little bit. I dont know if going back in would change anything ..
Maybe there is something else going on that the drs. are missing ?? I would discuss that with them.
I hope you feel better very soon !
Take care <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
CyrilCrodius
New member
Joint pain... are you sure it's not a reaction to an antibiotic? I had noticed the last 4 IV courses or so that I was getting worse after an IV course than I did before... turned out I was allergic to Tazobactam. The allergy was mild enough that I wouldn't realize until I was done that it had harmed me and it took me 4 times like that to really establish that I was doing worse after than before.
But 10% drop? God I can't begin to express how that sucks.
Yes you should go back to hospital. Defninitely. Without hesitation. Obviously something is not right. Don't let them send you home until they find out what.
But 10% drop? God I can't begin to express how that sucks.
Yes you should go back to hospital. Defninitely. Without hesitation. Obviously something is not right. Don't let them send you home until they find out what.
I went back today and my PFTs were the highest they've been in over a year! My joints are still killing me slowly but surely, but my lungs sound super clear. He's keeping me on IVs through Sunday evening, and I'll keep an eye on my symptoms. If I'm feeling better, I'll be done Monday. If not, we'll finish off the three weeks. The joint pain could be inflammation, my doc said, but also could be the fact that I have an incredibly low Vitamin D level, which he put me on a once weekly pill for. I'm still feeling cruddy, but it's making me feel better that my PFTs had jumped back up. <img src="i/expressions/face-icon-small-happy.gif" border="0">
D
DrRoe
Guest
Can you take more oral Vit D3 or even get a shot? The literature says low vitamin D "have been linked to chronic musculoskeletal pain of various types, muscle weakness or fatigue, fibromyalgia syndrome, rheumatic disorders, osteoarthritis, hyperesthesia, migraine headaches, and other somatic complaints." (http://pain-topics.org/clinical_concepts/vitamind.php)
I'm going to put in my 2 cents worth and I hope I don't step on too many toes. It is impossible to imagine that the repeated use of very strong anti-biotics wouldn't have dramatic and often terrible effects on your body. Whether it is absolutely necessary or not is something that has been argued ever since these drugs were introduced, but no study has ever claimed that there weren't serious side effects and most of them are cumulative, which means that the more times you use them the more likely that you will have side effects and the more severe those effects will be.
I wish nothing but the very best for all of us, but I am very doubtful that the Drs. and the drug companies they represent are always able to make an unbiased decision about what is really best for us in the LONG RUN. A quick fix is not a cure and up till now that is all any of them have been able to offer.
The very common idea that you should go in for a Tune-Up every year or that you spend 2 weeks in the hospital because you want to feel good on your vacation is not something that you can do without consequences. It is up to you and your Dr. to decide whether those consequences are worth it or not but it seems to me that all too often no other choices are given to us and many times there are other choices.
I may be crazy and I may be an outcast because I am not willing to "go along". I know I have not made most of my Drs. very happy but at least 1 has agreed w/ me. I am not going to name him here but I am sure there are others out there too.
Sorry to be a wet blanket, but if you don't take charge of your own life you will always be at the mercy of someone else.
I wish nothing but the very best for all of us, but I am very doubtful that the Drs. and the drug companies they represent are always able to make an unbiased decision about what is really best for us in the LONG RUN. A quick fix is not a cure and up till now that is all any of them have been able to offer.
The very common idea that you should go in for a Tune-Up every year or that you spend 2 weeks in the hospital because you want to feel good on your vacation is not something that you can do without consequences. It is up to you and your Dr. to decide whether those consequences are worth it or not but it seems to me that all too often no other choices are given to us and many times there are other choices.
I may be crazy and I may be an outcast because I am not willing to "go along". I know I have not made most of my Drs. very happy but at least 1 has agreed w/ me. I am not going to name him here but I am sure there are others out there too.
Sorry to be a wet blanket, but if you don't take charge of your own life you will always be at the mercy of someone else.
musclemania70
New member
Antibiotics are just one of the unpleasant treatment options that we have right now. yes they have side effects but for most, the benefits far outweigh the cost which is severe, permanent lung damage.
As long as he/she can bounce back from the antibiotics now, he/she will be in better shape when the new drugs come out and the lungs will be compromised less in the long run.
Hopefully the new drugs will be out in time for any major permanent damage from the antibiotics but you have to take your chances and let your lungs be the best they can be NOW. Its better to be agressive than complacent.
As long as he/she can bounce back from the antibiotics now, he/she will be in better shape when the new drugs come out and the lungs will be compromised less in the long run.
Hopefully the new drugs will be out in time for any major permanent damage from the antibiotics but you have to take your chances and let your lungs be the best they can be NOW. Its better to be agressive than complacent.
Dr. Roe- I'm on Replesta once a week now for the vitamin D. My doc said the joint pain might be because of the lack of vitamin D in my body or that I caught a virus, and to see how it does.
Tisha- We talked about how my PFTs could be so great if was feeling so sick. It's happened with me before, so it's not out of the norm, but we decided that feeling so sick might have been weather related, it might have been a fluke or I might have caught a virus. I hadn't changed anything, and my joints were (and are) still hurting terribly.
JustDucky- Thanks! I have had antibiotic joint pain from Cipro before; this feels similar (but I'm not on Cipro.) Hoping it goes away soon, no matter what it is.
Scarecrow- I've only been hospitalized twice. Once on 6/12 and once in October. I try not to be hospitalized, but I have seen benefits with my lung function when I take antibiotics, especially TOBI and Cayston. I have had negative effects from antibiotics, which I no longer take, but the benefits outweigh the drawbacks in many cases, in my case.
Musclemania70- Agreed, and while I might feel like crap, apparently the antibiotics helped my lung function leap up to the highest it's been in a long time. I've begun to be more aggressive and it's doing the job.
Tisha- We talked about how my PFTs could be so great if was feeling so sick. It's happened with me before, so it's not out of the norm, but we decided that feeling so sick might have been weather related, it might have been a fluke or I might have caught a virus. I hadn't changed anything, and my joints were (and are) still hurting terribly.
JustDucky- Thanks! I have had antibiotic joint pain from Cipro before; this feels similar (but I'm not on Cipro.) Hoping it goes away soon, no matter what it is.
Scarecrow- I've only been hospitalized twice. Once on 6/12 and once in October. I try not to be hospitalized, but I have seen benefits with my lung function when I take antibiotics, especially TOBI and Cayston. I have had negative effects from antibiotics, which I no longer take, but the benefits outweigh the drawbacks in many cases, in my case.
Musclemania70- Agreed, and while I might feel like crap, apparently the antibiotics helped my lung function leap up to the highest it's been in a long time. I've begun to be more aggressive and it's doing the job.
CyrilCrodius
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>scarecrow</b></i> I'm going to put in my 2 cents worth and I hope I don't step on too many toes. It is impossible to imagine that the repeated use of very strong anti-biotics wouldn't have dramatic and often terrible effects on your body. Whether it is absolutely necessary or not is something that has been argued ever since these drugs were introduced, but no study has ever claimed that there weren't serious side effects and most of them are cumulative, which means that the more times you use them the more likely that you will have side effects and the more severe those effects will be. I wish nothing but the very best for all of us, but I am very doubtful that the Drs. and the drug companies they represent are always able to make an unbiased decision about what is really best for us in the LONG RUN. A quick fix is not a cure and up till now that is all any of them have been able to offer. The very common idea that you should go in for a Tune-Up every year or that you spend 2 weeks in the hospital because you want to feel good on your vacation is not something that you can do without consequences. It is up to you and your Dr. to decide whether those consequences are worth it or not but it seems to me that all too often no other choices are given to us and many times there are other choices. I may be crazy and I may be an outcast because I am not willing to "go along". I know I have not made most of my Drs. very happy but at least 1 has agreed w/ me. I am not going to name him here but I am sure there are others out there too. Sorry to be a wet blanket, but if you don't take charge of your own life you will always be at the mercy of someone else.</end quote>
I completely agree with you. They have stopped doing tune-ups here in Quebec (Canada? I don't know) for at least 10 years. The give us antibiotics when we have an exacerbation. This study supports the idea that tune-up are really a bad idea : <a href="http://www.mdnews.com/news/2012_03/decade-long-study-raises-new">http://www.mdnews.com/news/2012_03/decade-long-study-raises-new</a>
"<em>Traditionally, bacteria-blasting antibiotics are used to suppress infection in CF patients’ lungs to the lowest level possible, but maintaining a diversity of bacterial communities may help some patients stay healthy longer</em>"
I completely agree with you. They have stopped doing tune-ups here in Quebec (Canada? I don't know) for at least 10 years. The give us antibiotics when we have an exacerbation. This study supports the idea that tune-up are really a bad idea : <a href="http://www.mdnews.com/news/2012_03/decade-long-study-raises-new">http://www.mdnews.com/news/2012_03/decade-long-study-raises-new</a>
"<em>Traditionally, bacteria-blasting antibiotics are used to suppress infection in CF patients’ lungs to the lowest level possible, but maintaining a diversity of bacterial communities may help some patients stay healthy longer</em>"
CyrilCrodius
New member
ryry11, studies show that oral vitamin D does very very little to increase the vitamin D levels in the blood of CFers. Another recent study has also found that using a solar lamp might have better effects on vitamin D levels in the blood. You might want to go that way if you can afford it. <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2846322/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2846322/</a>
J
Juniper
Guest
Sorry to hear you are feeling so rough. I suffer with my joints all the tima. I've just finished a course of IVS i was on Tobi and Ceftaz and my joints were worse whilst i was on them. My doc told me that ceftaz often makes the joints worse.
Hope you get sorted and feel better soon.
Hope you get sorted and feel better soon.