Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 In a message dated 10/14/2003 11:53:49 AM Central Daylight Time, kristine.patrick@... writes: e She will be OK!! pseudomonas will come and go. We have used Tobi and yes there are side effects my girls have not had any other then when my oldest was on Tobi with an IV not that was scary. I hope she never does that again! You can also use Collistin it is what my oldest is on right now. It is the Danish method and I really like it. You have to do it 3 times a day but you it only takes 10 to 15 to do. The Tobi takes anywhere from 30 to 40 minutes and that is really hard to get a kids to sit through that. My daughter is also on Cipro which I also hate because she has complained of her joints hurting and that is one of the side effects of cipro it damage the bone cartilage. I have not been as good about give her that. We have also been using the GSH and so far are doing really well with it. Next month we go in for a culture so will see if the GSH has helped that. CELEBRATE THAT THE MRSA IS GONE!!!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 e, Calm down, count to 10, take a deep breath. has been on TOBI for several years now. The only side effects that we have experienced are bad taste, more cough, and sometimes she looses her voice(not necessarily a bad thing sometimes) haha. With us it seems to come and go as far as growing the bugs(pseudomonas). At least we have something to treat it with. Take one day at a time. AND IT IS NOT MRSA!!!! Best wishes, Tina W., mother of , 17yoa wcf results are in Ok everyone, I need a little help. the Dr. just called. has staph aureus and pseudomonas. this is the first time she has cultered pseudomonas ( we really need to come up with an abbreviation for this word)and he is going to put her on cipro for three weeks and tobi for 28 days on and then 28 days off etc. She will continue to take the pulmozyme and do her vest twice a day. Oh, I forgot, the good news...no MRSA! However, I just don't know what to do with this information. I know that typically cf'ers eventually end up with pseudomonas and so I am not too surprised at this news. Regarding Tobi, are there any side effects when using the nebulizer? He said that there were side effects when using the other form ( liquid form?) like hearing loss and damage to one of the organs, I think he said the kidney. to tell you the truth after I heard the word pseudomonas, the rest was all " blah blah blah " like Charlie Brown's teacher. He also said that eventually the cipro will stop working...then what!?!?! What can I expect? SOMEBODY PLEASE TELL ME SHE IS GOING TO BE OK! I appreciate all your help!! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 I have two daughters with CF and my oldest never had any problems with a cough while on Tobi but my youngest would cough through whole 3 months she was on it. As soon as she was off the cough was gone. So I would say everyone is different. Oh ya they also had the hoarseness problem while taking tobi. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 Hi e, has been on Tobi for more than 3 years now. We do not notice any voice problems or anything other than less coughing than when she is in an " off " month but we monitored her tobi levels in the beginning even though it is the inhaled form. I forget how old is, but if she is under 6 you should probably request that they monitor her. (the dreaded peak and trough) 's levels were very high when she took 1 vial 2x daily. She takes 1/2 vial 2x daily and it has gotten rid of the pseudo (or at least she isn't culturing it any more) and her levels are fine. The doc's assumption that it won't cause problems because it is not IV is only partly true. Not as much gets into the bloodstream because it is not going directly through the bloodstream but the blood is oxygenated in the lungs where the tobi is entering the body. If oxygen can get into the blood though the lungs, then it stands to reason that so can the Tobi! I am not trying to say not to use it but to be cautious! Mom of 5 with CF, on Tobi for more than 3 years! results are in Ok everyone, I need a little help. the Dr. just called. has staph aureus and pseudomonas. this is the first time she has cultered pseudomonas ( we really need to come up with an abbreviation for this word)and he is going to put her on cipro for three weeks and tobi for 28 days on and then 28 days off etc. She will continue to take the pulmozyme and do her vest twice a day. Oh, I forgot, the good news...no MRSA! However, I just don't know what to do with this information. I know that typically cf'ers eventually end up with pseudomonas and so I am not too surprised at this news. Regarding Tobi, are there any side effects when using the nebulizer? He said that there were side effects when using the other form ( liquid form?) like hearing loss and damage to one of the organs, I think he said the kidney. to tell you the truth after I heard the word pseudomonas, the rest was all " blah blah blah " like Charlie Brown's teacher. He also said that eventually the cipro will stop working...then what!?!?! What can I expect? SOMEBODY PLEASE TELL ME SHE IS GOING TO BE OK! I appreciate all your help!! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 Hi e, Good news about no MRSA. And the abbreviation for Pseudomonas is Pa (as in, Pseudomonas aueruginosa). Both Cipro and TOBI will lower 's magnesium levels, which eventually creates a vicious cycle of ill health. Magnesium depletion can lead to her becoming resistant to other aminoglycoside antibiotics such as gentamycin and amikacin, and it could also lead to the Pa mutating into a mucoid form, which is more resistant to antibiotics. Additionally, despite what some doctors would lead us to believe, some people do experience ototoxic effects from TOBI, not just the IV form of tobramycin. Some research demonstrated that magnesium supplements taken before or during courses of aminoglycoside antibiotic therapy reduces ototoxic effects. While on the other hand, ototoxic risk increases when you take iron supplements while taking aminoglycoside antibiotics. These studies were done using IV forms, not inhaled, but why run the risk when you know that whatever is inhaled ends up in the blood stream and other organs? Also, Cipro is very hard on little ones. She may complain of severe leg pain, some hurt so bad they cry when trying to walk. Magnesium will help reduce this painful effect. If you live in a sunny climate, Cipro can make her sun sensitive, so you may need to restrict outdoor activities, including gym and recess at school. Kim --- " e " <kristine.patrick@s...> wrote: Ok everyone, I need a little help. the Dr. just called. has staph aureus and pseudomonas. this is the first time she has cultered pseudomonas ( we really need to come up with an abbreviation for this word)and he is going to put her on cipro for three weeks and tobi for 28 days on and then 28 days off etc. She will continue to take the pulmozyme and do her vest twice a day. Oh, I forgot, the good news...no MRSA! However, I just don't know what to do with this information. I know that typically cf'ers eventually end up with pseudomonas and so I am not too surprised at this news. Regarding Tobi, are there any side effects when using the nebulizer? He said that there were side effects when using the other form ( liquid form?) like hearing loss and damage to one of the organs, I think he said the kidney. to tell you the truth after I heard the word pseudomonas, the rest was all " blah blah blah " like Charlie Brown's teacher. He also said that eventually the cipro will stop working...then what!?!?! What can I expect? SOMEBODY PLEASE TELL ME SHE IS GOING TO BE OK! I appreciate all your help!! e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2003 Report Share Posted October 14, 2003 Hi e, SHE IS GOING TO BE OK!!!! Tobi is tobramycin, an antibiotic which is usually given by IV. It has been used by inhalation with CF patients for years, I think about 4 or 5 years ago they came out with Tobi which is meant for inhalation. It works on pseudomonas (How about we all call it PA?). Cipro also works against PA. If she becomes resistant to cipro then if the Tobi is not doing the job and is sick they may put her on IV's. I'm sure you're familiar with IV's, They can be done at home or in the hospital. Usually they start you out in the hosp and if things are going well and you want to they may send her home on IV's. Jump that bridge when you need to. They aren't all that difficult to do. Try not to worry too much, like you said you weren't all that surprised. PA can be treated. Keep doing what you're doing. There are a few other oral meds they can try like levaquin, floxin, etc, I don't know them all. My daughter has been on a few of them(one at a time!) at different times. They have worked for her and avoided IV's some times in the past. I hope this helps. take care! love, M Mom of Nick age 21 nocf and age 19 wcf Quote Link to comment Share on other sites More sharing options...
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