Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 My son has been on pulmozyme since it first came out and he says he could tell a big difference in himself ,more so than any of the tests showed. He is doing really well and says when he skips his pulmozyme he can tell a differance right away. He is pretty good about complying with his meds though at times i do have to nudge him along. > >Reply-To: cfparents >To: cfparents >Subject: Pulmozyme >Date: Mon, 30 Jun 2003 18:03:20 -0000 >MIME-Version: 1.0 >X-Originating-IP: 216.175.43.43 >Received: from n29.grp.scd.yahoo.com ([66.218.66.85]) by >mc6-f42.law1.hotmail.com with Microsoft SMTPSVC(5.0.2195.5600); Mon, 30 Jun >2003 11:24:36 -0700 >Received: from [66.218.67.198] by n29.grp.scd.yahoo.com with NNFMP; 30 Jun >2003 18:24:01 -0000 >Received: (qmail 93697 invoked from network); 30 Jun 2003 18:03:23 -0000 >Received: from unknown (66.218.66.216) by m5.grp.scd.yahoo.com with QMQP; >30 Jun 2003 18:03:23 -0000 >Received: from unknown (HELO n1.grp.scd.yahoo.com) (66.218.66.64) by >mta1.grp.scd.yahoo.com with SMTP; 30 Jun 2003 18:03:23 -0000 >Received: from [66.218.67.156] by n1.grp.scd.yahoo.com with NNFMP; 30 Jun >2003 18:03:22 -0000 >X-Message-Info: JGTYoYF78jEHjJx36Oi8+Q1OJDRSDidP >X-eGroups-Return: >sentto-104900-45766-1056997438-clog1760=msn.com@... >X-Sender: hlsmart@... >X-Apparently-To: cfparents >Message-ID: <bdpu18+bn7f (AT) eGroups (DOT) com> >User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-Yahoo-Profile: cubby17_00 >Mailing-List: list cfparents ; contact >cfparents-owner >Delivered-To: mailing list cfparents >Precedence: bulk >List-Unsubscribe: <mailto:cfparents-unsubscribe > >Return-Path: >sentto-104900-45766-1056997438-clog1760=msn.com@... >X-OriginalArrivalTime: 30 Jun 2003 18:24:36.0999 (UTC) >FILETIME=[DCB1B970:01C33F34] > >Hello All!!! > >I was wondering how many out there are on Pulmozyme and how it works >for them. Lexie is 9 and they haven't put her on it. Maybe they >don't think she needs it. I know that it thins the mucus out, but >other than that don't know much about it. Her doctor said he would >compare her PFT's and see if she would benefit. So far he hasn't >said anything, but a lot of times I have to bring things like that >up. Any info would be helpful. > >Thanks, > >, Mommy to Lexie 9 w/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 June 30, 2003 Report Share Posted June 30, 2003 Hi , I would push for it, I think it is one of the things that has kept my daughter as healthy as she is. She was in the study in I think '92-93 and stayed on it after it was approved. Her PFT's are still great. Her FEV1 is still in the 90's and she hasn't had a whole lot of lung problems. I think its great and easy to do, only once a day for 10 minutes or so. Definitely worth it, and I don't see any ill side effects, some people do but we haven't. hope this helps, love, M mom of age 19 wcf and Nick age 21 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 SAME for ERIN , my granddaughter . It does make a difference. More so at first , but when they get good & cleaned out, they it is less coming out as there isn't as much in . It moves easier & therefore not the buildup as before with out it . LOVE & HUGS, grandmomBEV Pulmozyme >Date: Mon, 30 Jun 2003 18:03:20 -0000 >MIME-Version: 1.0 >X-Originating-IP: 216.175.43.43 >Received: from n29.grp.scd.yahoo.com ([66.218.66.85]) by >mc6-f42.law1.hotmail.com with Microsoft SMTPSVC(5.0.2195.5600); Mon, 30 Jun >2003 11:24:36 -0700 >Received: from [66.218.67.198] by n29.grp.scd.yahoo.com with NNFMP; 30 Jun >2003 18:24:01 -0000 >Received: (qmail 93697 invoked from network); 30 Jun 2003 18:03:23 -0000 >Received: from unknown (66.218.66.216) by m5.grp.scd.yahoo.com with QMQP; >30 Jun 2003 18:03:23 -0000 >Received: from unknown (HELO n1.grp.scd.yahoo.com) (66.218.66.64) by >mta1.grp.scd.yahoo.com with SMTP; 30 Jun 2003 18:03:23 -0000 >Received: from [66.218.67.156] by n1.grp.scd.yahoo.com with NNFMP; 30 Jun >2003 18:03:22 -0000 >X-Message-Info: JGTYoYF78jEHjJx36Oi8+Q1OJDRSDidP >X-eGroups-Return: >sentto-104900-45766-1056997438-clog1760=msn.com@... m >X-Sender: hlsmart@... >X-Apparently-To: cfparents >Message-ID: <bdpu18+bn7f (AT) eGroups (DOT) com> >User-Agent: eGroups-EW/0.82 >X-Mailer: Yahoo Groups Message Poster >X-Yahoo-Profile: cubby17_00 >Mailing-List: list cfparents ; contact >cfparents-owner >Delivered-To: mailing list cfparents >Precedence: bulk >List-Unsubscribe: <mailto:cfparents-unsubscribe > >Return-Path: >sentto-104900-45766-1056997438-clog1760=msn.com@... m >X-OriginalArrivalTime: 30 Jun 2003 18:24:36.0999 (UTC) >FILETIME=[DCB1B970:01C33F34] > >Hello All!!! > >I was wondering how many out there are on Pulmozyme and how it works >for them. Lexie is 9 and they haven't put her on it. Maybe they don't >think she needs it. I know that it thins the mucus out, but other than >that don't know much about it. Her doctor said he would compare her >PFT's and see if she would benefit. So far he hasn't said anything, >but a lot of times I have to bring things like that up. Any info would >be helpful. > >Thanks, > >, Mommy to Lexie 9 w/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 June 30, 2003 Report Share Posted June 30, 2003 Ricky (7) has been on Pulmozyme for 2-3 years now and I think it's been very beneficial for him. He's been in the hospital here and there, sure, but when we are in clinic, his lungs generally sound clearer than they have in years. Becky > Hello All!!! > > I was wondering how many out there are on Pulmozyme and how it works > for them. Lexie is 9 and they haven't put her on it. Maybe they > don't think she needs it. I know that it thins the mucus out, but > other than that don't know much about it. Her doctor said he would > compare her PFT's and see if she would benefit. So far he hasn't > said anything, but a lot of times I have to bring things like that > up. Any info would be helpful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hi My daughter, , is four and a half and has been on Pulmozyme for about 3 yrs. I think it does make a difference. She hasn't been hospitalized for more than 2 & 1/2 yrs. (the Tobi she has been on every other month for 3 yrs helps too!) Pulmozyme Hello All!!! I was wondering how many out there are on Pulmozyme and how it works for them. Lexie is 9 and they haven't put her on it. Maybe they don't think she needs it. I know that it thins the mucus out, but other than that don't know much about it. Her doctor said he would compare her PFT's and see if she would benefit. So far he hasn't said anything, but a lot of times I have to bring things like that up. Any info would be helpful. Thanks, , Mommy to Lexie 9 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 hello anna is 18 months and has been on pulmozyme since januaury and has been great since then so far so good she gets it once a day in the morning michelle Re: Pulmozyme > Ricky (7) has been on Pulmozyme for 2-3 years now and I think it's been > very beneficial for him. He's been in the hospital here and there, > sure, but when we are in clinic, his lungs generally sound clearer than > they have in years. > > Becky > > > Hello All!!! > > > > I was wondering how many out there are on Pulmozyme and how it works > > for them. Lexie is 9 and they haven't put her on it. Maybe they > > don't think she needs it. I know that it thins the mucus out, but > > other than that don't know much about it. Her doctor said he would > > compare her PFT's and see if she would benefit. So far he hasn't > > said anything, but a lot of times I have to bring things like that > > up. Any info would be helpful. > > > > ------------------------------------------- > 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 June 30, 2003 Report Share Posted June 30, 2003 Abby has been on Pulmozyme since she was diagnosed at 3 months. She is 18 months now. She uses it once a day. Pulmozyme digests the dead white blood cells that contribute to the thicker mucus. I have a friend who's son (17 years old wcf) does not use it, because he saw no improvment from it. It's hard to tell if it helps Abby, since she too little to talk. I thought that all of the CF Care Centers automatically prescribed it. Maybe not. Gale > Hello All!!! > > I was wondering how many out there are on Pulmozyme and how it works > for them. Lexie is 9 and they haven't put her on it. Maybe they > don't think she needs it. I know that it thins the mucus out, but > other than that don't know much about it. Her doctor said he would > compare her PFT's and see if she would benefit. So far he hasn't > said anything, but a lot of times I have to bring things like that > up. Any info would be helpful. > > Thanks, > > , Mommy to Lexie 9 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 Hello there Lexie, Our 11yrs has only just started Pulmozyme a few months ago. It has been heaven sent, and has made such an incredible difference. He was on a trial period for 4 weeks, and for him to be able to continue with Pulmozyme his lung function needed to improve by 10%. Well, when he went for his lung function test it had improved by 24%. We were thrilled. I do understand that not everyone has these same results and I do know that this must be still given along with all other treatment etc. I also believe that 's fantastic results were helped by him being co-operative with his treatments. You see for a couple of years, it has been a battle to get him to do his treatment. He has been very angry etc. Anyway, his last admission was a particularly scary and horrifying experience for him and our family and I think this may have scared him into doing his treatments and meds properly. This was all good timing for the pulmozyme. We love the Pulmozyme and it has done incredible things for s health. a. cubby17_00 wrote: Hello All!!! I was wondering how many out there are on Pulmozyme and how it works for them. Lexie is 9 and they haven't put her on it. Maybe they don't think she needs it. I know that it thins the mucus out, but other than that don't know much about it. Her doctor said he would compare her PFT's and see if she would benefit. So far he hasn't said anything, but a lot of times I have to bring things like that up. Any info would be helpful. Thanks, , Mommy to Lexie 9 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 has been on pulmozyme since birth, his cf dr said if he had a child with cf he would have them on it, that was all we needed to hear. we do it 1 x a day before the vest at night. amy mom to nathan who is 26 months Re: Pulmozyme > Ricky (7) has been on Pulmozyme for 2-3 years now and I think it's been > very beneficial for him. He's been in the hospital here and there, > sure, but when we are in clinic, his lungs generally sound clearer than > they have in years. > > Becky > > > Hello All!!! > > > > I was wondering how many out there are on Pulmozyme and how it works > > for them. Lexie is 9 and they haven't put her on it. Maybe they > > don't think she needs it. I know that it thins the mucus out, but > > other than that don't know much about it. Her doctor said he would > > compare her PFT's and see if she would benefit. So far he hasn't > > said anything, but a lot of times I have to bring things like that > > up. Any info would be helpful. > > > > ------------------------------------------- > 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 July 1, 2003 Report Share Posted July 1, 2003 Christian was put on Pulmozyme as soon as he was diagnosed, we started it in the hospital that very first night. I believe it has helped him stay as healthy as he has. And with the new sidestream nebulizer it now only takes 10 minutes. Tina Mom to Christian 11 yowcf and 19 yowocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 Just a quick question, Is Pulmozyme different than Pulmacort? Cheryl, mom to 3 boys, Zac 7 yrs. wocf, Jake 2 yrs. wocf, 17 mos. wcf Re: Pulmozyme Hi , I would push for it, I think it is one of the things that has kept my daughter as healthy as she is. She was in the study in I think '92-93 and stayed on it after it was approved. Her PFT's are still great. Her FEV1 is still in the 90's and she hasn't had a whole lot of lung problems. I think its great and easy to do, only once a day for 10 minutes or so. Definitely worth it, and I don't see any ill side effects, some people do but we haven't. hope this helps, love, M mom of age 19 wcf and Nick age 21 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 > Just a quick question, Is Pulmozyme different than Pulmacort? Absolutely! Pulmacort is an anti-inflamatory. Pulmozyme " thins " the mucus. jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 Yes Pulmozyme is not a steroid, it is an enzyme that breaks up the thick CF mucus. It is probably very much more expensive than pulmicort too. (Around $1000 per months supply) Pulmozyme has a web site, I don't know the URL but you could probably do a search for it and come up with lots of useful info, there is also info on it in the cystic-l handbook, which can be reached by typing www.cystic-l into your web browser. hope this helps, love, M RE: Pulmozyme > Just a quick question, Is Pulmozyme different than Pulmacort? > Cheryl, mom to 3 boys, Zac 7 yrs. wocf, Jake 2 yrs. wocf, 17 > mos. wcf Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.