Heyz, I ve had 2 iv tune ups in the last 2 months and all in vain. I respond to treatment, but after one week of stopping it i get congested again and as if nothing was taken. I ve taken ceftazidime, gentamycin, and amikacin lately. Although, the pseudomonas is sensitive to them I dont think they are doing anygood. Its no more worthy to get a hospital tune up anymore if I would feel better for 1 week after only. My question is that after u get your ivs for 2 weeks or so for how long u stay good? Im questioning only those with pseudomonas. thx
ivs no more beneficial
- Thread starter ihatecf
- Start date
In addition to 10-14 days of iv in the hospital for the past 5 years I come home on IV for at least 2 weeks. I have had up to 6 weeks at home on iv depending on what the new sputum cultures show. Sometimes it takes that long to actually clean me out & sometimes its a little extra for good luck. My "good stage" time varies. This year I was not doing well. I usually do well up to 18 months or so & then sometimes I can take care of things without the iv. It depends. I use to average 7 years then it went to 5 then 3 & now its 1 1/2. My problems became more frequent as I got older, but for a lot of the time I didnt do what I was suppose to before/after the iv gig!
Purplelungs
New member
It depends for me too. I have been well after a tune up anywhere from 2 weeks to 8 months. I just got out of the hospital and a week and a half later I am coughing again. I dont know if its just something easy to treat or not yet. Have you only ever had those three drugs? If so demand your doctor do an extensive sputum cluture. Ask for them to try a different med you havent had before. I know there are several. Some drugs they only use as a last resort because they have alot of side affects. I believe one (i cant think of the name) alot of people have small to severe allergic reaction to, at least some type of allergic reaction. So they have to desensitize you. Have you ever had levaquin (comes in iv and oral form), vancomyicyn, tobramacyn (iv), maxipime? Those are a few I know of, just wondering if you have ever had them. Anyway it also might be your doctor needs to find a right "cocktail" of iv meds that will work best. I know there for a while when I was really sick and needing ivs a few weeks after getting off ivs...I had to change doctors for anyone to listen to me (not on purpose i moved)...anyway my new docs put me on a different combo of oral meds and iv meds and i "magically" got better. My old docs kept putting me on the same thing everytime i was in for a year. Even after a few sputum cultures came back not as sensitive to a med, and I told them this and he didnt listen. Oh well sorry for my short rant. I hope they find something to help you soon. If you have to demand them to change something up.
hi purple lungs, yep ive taken ceftazidime many times and the last it just fell short I think. Concerning tobramycin its virtually the same as gentamycin. Levaquin no more works for me and it never did actually. My remaining options are imipenem and tazocin . Imipenem had been used before while tazocin I had never the honor to meet yet. I think as you said its a matter of getting the right combination. However, I think the treatment period was never enough and the right dosage wasnt given. Its a pity that I feel I can treat myself better than the doctor does and if i was given the chance to assign my treatment my health would have been much better.
beautifulsoul
Super Moderator
I am 14 and had pseudomonas when I was 11 and they had me on amikacin. And it wasnt working so they tried some other meds but i cant remember what they were called. in the mean time I was growing something else and they didnt know it until they did a biop. the pseudomanas was gone. but they didnt know what med worked. and the other thing i was growing is mico bacteria which I still have NOW. and I am still on amikacin from 4 years ago. what I am saying is I am still sick and never got any better. sry if this doesnt make any sence. I tried to explain the best that you can understand.
wallflower
New member
When you come off your ivs, are you doing more chest therapy? Not nebs, but the vest or pounding? I don't know if that would help or not, just an idea.
I agree that you should have a full sputum analyasis (if you haven't already). I also have micro bacteria in my lungs that they didn't find until I was in the hospital - it put me in quarintine because it is related to TB, but isn't and is not contag. Anyway, since then I've been taking Amikacin as a neb which seems to still be working for me. Was the Amikacin you were on IV? If so, maybe when you come off your iv, you can continue to take it as a neb?
I agree that you should have a full sputum analyasis (if you haven't already). I also have micro bacteria in my lungs that they didn't find until I was in the hospital - it put me in quarintine because it is related to TB, but isn't and is not contag. Anyway, since then I've been taking Amikacin as a neb which seems to still be working for me. Was the Amikacin you were on IV? If so, maybe when you come off your iv, you can continue to take it as a neb?
beautifulsoul
Super Moderator
Yes the amikacin I am on is IV. I will ask my doctor about taking it as a neb though. sounds like a good idea to me. and I know that the micro bacteria is related to TB. they had me in isolation at the hospital for a few days cause they didnt know if it was TB!
Mockingbird
New member
I'm not sure about this, but isn't it normal to get congested right after going on IV's? I think i remember a doctor saying that at one point. The thing is, the congestion would be in the upper airways instead of the lower, so it would be more easy to get rid of.... I think that's what I remember, anyway.
blindhearted
New member
Maybe you need to be on IVs longer than two weeks. A long time ago I was fine after only two weeks but now I have to have no less than three weeks of treatment. I do a culture before the second week is up to decide if I need a third week (answer is usually yes). I do the same thing each week until my culture is clear for however many weeks it takes. I also have Pseudomonas and MRSA, so when one flares up...the other joins the "party"....which also makes treatment longer.
Also during and after IVs be sure to do your nebs and vest/pounding like you should. It helps to makes sure you stay clear and get the junk up before it can quickly regrow.
Also during and after IVs be sure to do your nebs and vest/pounding like you should. It helps to makes sure you stay clear and get the junk up before it can quickly regrow.
wallflower
New member
Because my lungs are doing alright, my amikacin neb is 1ml (syringe access vial) with 2 squirts of bronco saline. It lasts for about all of 10 minutes. I can tell it's working, but it leaves your throat a little tight (like your coming down with a cold). I've been told that if my pfts go down, I'll have to switch to IV. I've been on it for a couple of years now, and will probably have to take it forever (as long as it keeps working) for the micro bac, as it is near imposs. to totally get rid of it.
When I first started it, my doc said it was experimental and the only data there was were with pigs and a few very elderly/sick people. I don't know if that has changed since then, but so far I am doing ok on it and much prefer to IV (but I guess who wouldn't).
When I first started it, my doc said it was experimental and the only data there was were with pigs and a few very elderly/sick people. I don't know if that has changed since then, but so far I am doing ok on it and much prefer to IV (but I guess who wouldn't).
Hi I hatecf, I understand your frustration...I have been on IV's 4 times in 5 months, actuallyl going through a cycle now..this time for 4 weeks. I started off with Zyvox, fortaz, Zosyn, Diflucan (had yeast in my sinuses) and Tobi....I have B. cepacia in my sputum, when it was cultured it was in very high conentrations and I was feeling awful. I am still in the hospital for this tune up..won't go home until the 22nd. Maybe two weeks isn't enough for you makes 4 weeks this time for me...some people I know are on IV's up to 6 weeks to clean themselves up. When I was on the two week regimines, I felt like you did...I f elt okay for about two weeks tops after teh IV 's then I would start to feel terrible..then they would culture me and lo and behold, the cepacia would be back in full force. At the end of the two weeks of antibiotics, rare or no colonies would show up so it gives you an idea how agressive this can be. I would talk to your doc and try and fine tune your tune ups...Like I said, I share your frustrations...hang in there my friend, I am thinking of you. Cepaciagal <img src="i/expressions/face-icon-small-smile.gif" border="0">