Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 In a message dated 3/2/2004 6:27:28 PM Eastern Standard Time, bcweston3@... writes: > I read that in testing Gentamicin in nasal applications it can result > in read-through of CTFR protein for people with Grade I mutations > (ex. G542, W1282X, R553X, 1717-1G->A) > > http://content.nejm.org/cgi/content/short/349/15/1433 > > I think this drug is usually used for urinary infections. Has anyone > ever heard of it being used for CF? > I never heard of that. I heard Floxin is used for urinary infections. Rosemary in NY with 3 children (13, 11 and 7) with CF. I have a dog named TOBI and have coined the phrase " BREATHE DAMMIT " my new favorite quote is Any idiot can face a crisis - it's day to day living that wears you out. Anton Chekhov Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Gentamicin is used frequently in CF. I can't quite figure out how the CFF plans to justify the use of gentamicin since it is so toxic. It is one of the aminoglycosides known to cause ototoxcity resulting in vestibular damage. It also greatly depletes magnesium, which can result in pseudomonas becoming resistant to the drug and becoming mucoid. Gentamicin as a potential long-term therapy in CF is a scary thing to me. Kim > I read that in testing Gentamicin in nasal applications it can result > in read-through of CTFR protein for people with Grade I mutations > (ex. G542, W1282X, R553X, 1717-1G->A) > > http://content.nejm.org/cgi/content/short/349/15/1433 > > I think this drug is usually used for urinary infections. Has anyone > ever heard of it being used for CF? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 Yes, and the mutations you mentions, it does have the effect that you stated. It is almost as commonly used in cf as Tobramycin. Good site, too--I'm going back to it------said she, faster than silent " e " (in English)! Thank you, n Rojas Gentamicin I read that in testing Gentamicin in nasal applications it can result in read-through of CTFR protein for people with Grade I mutations (ex. G542, W1282X, R553X, 1717-1G->A) http://content.nejm.org/cgi/content/short/349/15/1433 I think this drug is usually used for urinary infections. Has anyone ever heard of it being used for CF? ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 I discussed this with Zach's doctor since Zach has a stop mutation (K710X). His theory was that gentamicin would be altered in such a way that it would no long be an " antibiotic " , but it would still be able to correct the CFTR malfunction in stop mutations. How this might be accomplished is anyone's guess. He also theorized that if one mutation could be corrected then the person might only have the CFTR malfunction of a carrier. In France they are testing ways to turn on the sodium chloride channel in the G551D mutation. That is Zach's other mutation so I am very interested in that too. Sara > > I read that in testing Gentamicin in nasal applications it can result > > in read-through of CTFR protein for people with Grade I mutations > > (ex. G542, W1282X, R553X, 1717-1G->A) > > > > http://content.nejm.org/cgi/content/short/349/15/1433 > > > > I think this drug is usually used for urinary infections. Has anyone > > ever heard of it being used for CF? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2004 Report Share Posted March 2, 2004 In the mutations mentioned, Gentamicin can make the missing pro tein available, but only in those mutations mentioned in the NEJM-- nearly as I can determine, n--great typing, hunh? Gentamicin I read that in testing Gentamicin in nasal applications it can result in read-through of CTFR protein for people with Grade I mutations (ex. G542, W1282X, R553X, 1717-1G->A) http://content.nejm.org/cgi/content/short/349/15/1433 I think this drug is usually used for urinary infections. Has anyone ever heard of it being used for CF? ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 In Spain gentamicin is given with te same purpose that tobramicin: to avoid PA colonisation. Both are aminogycosid antibiotics, and I think both have similar side effects. My daugther Olaia (13 yo, DF508/G542x) is on inhaled gentamicin since 11 months ago (with 2 months of resting). Not only as PA prevention, but also by the effects on the stop mutations: She is now 11 months without a cold (usually she gets 3-4 every year) and the same time without coughing at night. For us is clear the effect of gentamicin on the stop mutations. But the problem are the side effects (kidney damage ant ototoxicity). It is known that, when inhaled, toxicity is much lower than when I.V., but in fact that toxicity exist when given on a long term. For the moment we will continue with it, but resting one month every three, more or less, to avoid accumulation of the toxic substances. Salva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Hi all, Gentamicin has been found to cause the gene to read passed the stop, thereby producing normal cftr in those with the stop mutations. (I think I got that right). There is the worry that using gentamicin as is could cause toxicity over the long run. Those with stop mutations will find the following article interesting about a new pill being tested called PCT128. It does the same thing without the toxicity of gentamicin. Popping a pill could fix gene defect http://www.newscientist.com/news/news.jsp?id=ns99994269 C Mommy to Mick and Alli, 4 yo twins wcf (both mutations are stop!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 " There is the worry that using gentamicin as > is could cause toxicity over the long run. " > This is not a worry, this is a fact, it may happen on the short term, too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 Salva, thank you for a most informative post, Love to you and to yours, n Rojas, usa RE: Gentamicin In Spain gentamicin is given with te same purpose that tobramicin: to avoid PA colonisation. Both are aminogycosid antibiotics, and I think both have similar side effects. My daugther Olaia (13 yo, DF508/G542x) is on inhaled gentamicin since 11 months ago (with 2 months of resting). Not only as PA prevention, but also by the effects on the stop mutations: She is now 11 months without a cold (usually she gets 3-4 every year) and the same time without coughing at night. For us is clear the effect of gentamicin on the stop mutations. But the problem are the side effects (kidney damage ant ototoxicity). It is known that, when inhaled, toxicity is much lower than when I.V., but in fact that toxicity exist when given on a long term. For the moment we will continue with it, but resting one month every three, more or less, to avoid accumulation of the toxic substances. Salva ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2004 Report Share Posted March 3, 2004 I was very excited to read your post. I did not know inhaled gentamicin was being used already for those with stop mutations. I will pass this info along to Zach's doctors. I am sure they think he is much too you to be doing this until it has been proven effective in older patients, but it gives me so much hope. I am glad to hear your daughter is having success with it. Sara > In Spain gentamicin is given with te same purpose that tobramicin: to > avoid PA colonisation. Both are aminogycosid antibiotics, and I think > both have similar side effects. > My daugther Olaia (13 yo, DF508/G542x) is on inhaled gentamicin since > 11 months ago (with 2 months of resting). Not only as PA prevention, > but also by the effects on the stop mutations: > She is now 11 months without a cold (usually she gets 3-4 every year) > and the same time without coughing at night. > For us is clear the effect of gentamicin on the stop mutations. > But the problem are the side effects (kidney damage ant ototoxicity). > It is known that, when inhaled, toxicity is much lower than when > I.V., but in fact that toxicity exist when given on a long term. > For the moment we will continue with it, but resting one month every > three, more or less, to avoid accumulation of the toxic substances. > > Salva Quote Link to comment Share on other sites More sharing options...
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