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- Thread starter anonymous
- Start date
now whose being childish and going off on someone. really who ever you are youroutburst is not only inapproriate but very irrational. to make such a comment in grievance or protest to an insidence with out naming the incidence or placing your name or screen name on it purely assinign. when your ready to come back and act like an adult then you can have something to sayjoe g. 23 m/wcf
You sound either very angry or like you are trying to cause trouble amongst the CFers. If you don't like our website, go away and find somewhere else to vent. If you want to stay and talk with us, stay, but be considerate of other people's feelings and opinions. Everyone with CF is living their own life and doing differently depending on their health at that particular time. If you are doing well, that's great...but don't knock others that mightnot be doing as well! Barbara <img src="i/expressions/rose.gif" border="0">
I can't tell you how much this web site means to us! We get lots of information and encouragement. Hopefully the few mean spirited comments I've read today are over. I'm glad there's somewhere to ask questions and share our hopes and fears. God bless you all. Jan (wife of Greg, CF'er - 44 years, tx candidate)
The only thing I do not like about this website is that, if you post anything about TOBI that is not good, it will be deleted. Personally, I think TOBI is awful and totally useless. Inhaled TOBI that is, not the Tobi that you get in the hospital. I like that stuff. Anyway, I like this site, other that it is sponsored by TOBI, which I HATE and don't recommend. And I'm interested in how long this post stays up for. I LOVE THIS SITE.....I HATE TOBI!!!
AbsintheSorrow
New member
I also liked IV TOBI, but couldn't stand the inhaled stuff. I've been on Pulmo for 11 years, and have done Coliston inhaled before, but whenever I've tried to use inhaled TOBI, I've started the usual coughing that goes with inhaled drugs. Now because I've coughed for so long, this usually doesn't do much. But with the TOBI, for whatever reason the taste doesn't agree with me and on more than one occasion (where usually my gag reflex is used to coughing and barely reacts) I've thrown up from it. Even if just a handful of juice or spit, it's still more than anything else has given me. And I can't stand it.
they are just saying they dont like inhaled tobi and that anything anti-tobi is taken off the site. if you read correctly you would see they were praising iv tobi. all inhaled anti b's have the potential to cause more coughing problems so they have a right to spread the word.Kylie
How about being a little more constructive here people. What the f***. People have a right to whatever opinon they have. If they feel the need to preach their thoughts to others... so be it, we all have the ability to form our own opinions. People seem to have gotten a little off track with negative B.S, focusing on a few comments instead of trying to examine what the indivuduals problem was. I am very interested as to why certain people have a strong disliking for inhaled TOBI. This is one of the meds I currently use daily, along with pulmozyme. Have there been complications with your usage? You must realize that we all have different needs in our bodies. You should not condemn something that may actually be beneficial to someone other than yourself. Instead, tell us about your problems and hopefully it may help someone that has experienced the same issues. We've all been born with an illness that will forever affect our lives, but I also believe in some way it has given us a sence of life that many people without our condition don't have. Please disregard any negativity that may have been previously posted & start fresh with thoughts and ideas that are productive. Thanks,Mike (25w/CF)
AbsintheSorrow
New member
I didn't think I was condemning TOBI. I thought I was doing exactly what you said, and just giving my personal reasons for hating it. I know it helps a lot of people, and I think it's great for the people it helps. I just personally don't like it. If you want the "complications" with my using it, it's in my first response. They're not really devastating complications, but just annoyances I choose not to deal with. All in all, for the help it does for others, I think TOBI is super. I just don't like using it myself.
Hi Emily,Cool, thanks for clearing that up with me. It does seem like some people did also take things the wrong way. I can't blame you for discontinuing the usage of TOBI, that must have been quite annoying. Hey... I like you're quote. Evanescence is amazing.Take care,Mike
AbsintheSorrow
New member
Completely irrelevant... but don't get me started on Evanescence and how much I love them!! lol <img src="i/expressions/face-icon-small-happy.gif" border="0">
Speaking for MYSELF ONLY I don't like Tobi or Pulmozyne. Reasons: Tobi tastes nasty but I can deal with taht and the extra coughing because it doesn't last long. But it seems that if I am on inhaled tobi for to long a period it doesn't work when I need it, when I have an infection. So I only take Tobi inhaled when I have an infection. Pulmo: I have taken it since it since I was about 11. It worked great then. Then about a few years ago it started to just be a waste of time. Then I started coughing up streaks of blood, my doctor said pulmo can cause this, but I think it was the tobi because the time i coughed up blood i was out of pulmo. Anyway. When I resummed the pulmo I still had blood streaking, still nothing bad to worry about. The streaking was caused by small vessels popping because I coughed so much and so hard after taking the pulmo. It seems as my asthma also became worse the pulmo made my asthma worse or flare up after a dose. I would take a dose of pulmo and feel even tighter before an albuterol treatment, sometimes so tight I could barely breath. Then because of the tightness my bodies reaction was to cough so I coughed a constant exhaling cough until my head felt like it would explode. Then I would have to take a huge deep breath in causing more coughing, thats how the vessels popped. And why I don't like pulmo. As with lots of people after using a medication for a while they can become resistant or even develop an allergy to it. Weird but true. My doctor is fine with me not taking the pulmo. He does however still want me to take it when in the hospital, I am under supervision and they can monitor dosing, like give me jsut half at a time or somthing. He says even though tobi and pulmo are great drugs, and I agree, they don't work for everyone and some people can build a resistance to them. I also know of a few CFers who don't like to take inhaled or iv tobi unless they have an infection and some only want to take it if its a bad infectiond for fear they may become resistant when they need it most. These are just personal opinions. I do not speak for anyone but myself, and I may repeat what others have told me but thats still jsut for those who think that way. I truely believe Tobi and Pulmo are wonderful drugs. AB
AbsintheSorrow
New member
Exactly! See, I don't like the TOBI, as I said. But I live on Pulmo. I love the stuff (despite it being an obnoxious use of time haha). If I skip it for a day or two, I can immediately tell. And I've been on it for 11 years now. So the same with AB, I guess. S/he doesn't like the TOBI or Pulmo, but knows enough to know they're excellent drugs. I don't use TOBI for myself, but I know that it's a good drug. Hehe. <img src="i/expressions/face-icon-small-smile.gif" border="0">