Hi, My doctor has told me to stop using pulmozyme daily instead just use it when I need to use it. I have been fighting with coughing up blood for about a month now and when I stopped the pulmozyme about 2 weeks ago I have streaking and that is it and it isn't every day now. I was wondering if anyone else uses this medicine on a as needed bases? I feel great not doing the pulmozyme daily and my sputum seems to come up better and I am not as congested either. Thank you for listening.Karen 38w/CF
Using Pulmozyme as needed
- Thread starter anonymous
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Karen,I am a 30 yr old female with CF. When pulmozyme first came out on the market...my doc put me on it right away. My lungs got worse when I was on it. I had more difficuty breathing...I was wheezing alot...and fevs did not improve with it. I also have found that I do better without the pulmozyme. ....I also only take it now on a needed basis...Take CareDea
Hello, I am 30 with CF and I also do pulmozyme when needed. I usually do it on days when I wake up and I'm really congested. I was on it daily for a long time and then I started having problems with coughing up blood, that is when My DR told me to do it only when I feel I need it. I usually only use it once a week now. I find I also do better without it and my wheezing isn't as bad. I hope you are feeling better soon.
DianeRuizC
New member
Hey,i'm 20 with cf and I use pulmozyme. But I on the other hand I do use it everyday and it seems to work miracles on me =) On the days I dont take it I dont feel as good. - Diane
I don't even use Pulmozyme since I turned 30 my Doctor felt it wasn't helping me anymore. I have been off of it for a while now and my PFT's went up 25% so far and that may not sound like a lot but the wheezing and junky feeling I always had after my pulmozyme treatment is no longer here. I will never try pulmozyme again. I think it works better for the younger CFers but the older I get the more meds I am changing. I am glad not to be on pulmozyme anymore.
-Elvis has left the buildingWow. I cannot believe your doctors have started prescribing Pulmozyme on an as needed basis. That is great! Maybe it will come my way. I am 26, and I have been on it for as long as it has been out. My PFT's are pretty much consistent. Tobi is my problem, I think. I don't feel as good when I am on it, but my sputum is better and all. So, we'll see. Dr. wants me to begin a new study, so we'll see what that is about.
Interesting.... I have not taken Pulmozyme for two days now (mostly just because I'm inherently lazy today) and I feel bloody awful... For those that have been off Pulmozyme, did any of you experience a period of withdrawel and then (like those who kick a drug habit) feel better?I am going to ask my doctor about this, but I would appreciate any and all responses regarding this matter.Thank you,Sean
I have been off Pulmozyme now for a little over 2 weeks. I felt kinda yucky the first 2 days and then I started to notice I was breathing better and I wasn't as congested anymore. My routine was always first thing in the morning do a Pulmozyme and now I do a Proventil and go about my day. I save 15 minutes a day by kicking the Pulmozyme out. I feel so good and my PFT's actually went up 7% which is great and my Doctor was even impressed by the jump in my PFT's. I am 34 and I had been using Pulmozyme every day evry morning for a little over 5 years so now being off of it I love it. I feel great. Just my 2 cents.....Sandy 34 w/CF and asthma
Hi Sean, You are so correct. I do advair twice a day and do proventils 3-4 times a day and use my vest 2 times a day 30 minutes each time. I just feel that Pulmozyme isn't doing me any good nor is it doing any harm to me either. I just figured if it isn't helping me why put it through me. I thought to it saves me money not having to save up to $400 a month for just that when it just sits in my fridge and then I have to throw it out, so I just stopped ordering it. I would suggest highly talking to your doctor before stopping this medicine make sure that is not helping you, because if it does help you keep doing it. I hope you are having a nice Christmas.Sandy 34 w/Cf and asthma
Pulmozyme was developed to clear the polymers released by cell apoptosis (death) or lysis (rupture), which occurs normally and increased in the face of inflammation. When you lose cough/cilia clearance in cystic fibrosis, the bodies pro-inflammatory/anti-inflammatory system takes over to rid the body of pathogens and antigens. This will increase mucous because when the cell goes through apoptosis or lysis, it releases polymers that add to the thickness/viscousness of the mucous.Pulmozyme has been shown to thin mucous too much, but the studies never stated whether the proper nebulizer/compressor unit was being used. Each pharmaceutical company have their own clinical trials utilizing nebulizers and compressors, but it is limited, because these companies do not make money on promoting nebulizers and compressor units. They need a product that will work with their medication both in the United States and Europe. I'm almost positive that when a company like Chiron (Tobi) chooses to conduct a clinical trial with their product and they choose a nebulizer and compressor, that the manufacture of each product contribute financially to the clinical trial.Here's what I know and recommend you folks ask your cystic fibrosis care physician about. If Pulmozyme is not distributed throughout my entire lungs evenly, will the concentration at one specific location within my lungs lead to bleeding.The Pari LC Star nebulizer functions under certain pre-determined limits meaning: 78% percent of the particles are below 5 micrometers in size and 34% are below 2 micrometers in size. The pulmonary alveoli sacs where oxygen is exchanged into the blood are below 2 micrometers in size and this is where virus' and bacteria prosper. According to Genentech (Pulmozyme) you must have an air pressure between 35 - 45 psi (pounds per square inch) to properly break Pulmozyme down and to allow the nebulizer to function within its pre-determined limits.Example: If you combine the Pari LC Star nebulizer with the Invacare Mobilaire 50 psi (adjustable air pressure), then set the compressor unit to maximum (50 psi), it will give you a pressure of 35 - 45 psi when the nebulizer/medication are attached. The Mobilaire 50 psi will then break the medication down so the Pari LC Star can function as it is supposed to. This will allow the medication to be evenly distributed throughout your lungs, both the upper respiratory and lower respiratory, which include the pulmonary alveoli sacs.It could quite possibly be that if Pulmozyme is not properly broken down using the proper compressor and if your nebulizer does not work within pre-determined limits, thusly not allowing the medication to be broken down, the medication very well may not be reaching all areas of your lungs. I would think that high concentrations of Pulmozyme on an isolated area of the lung would thin the mucous at one location too much, possibly causing bleeding.As you cystic fibrosis care physician about that, but always ask you physician before changing. The cystic fibrosis foundation conducted a study at the University of Washington about two years ago regarding nebulizers and compressor units. They stated that a nebulizer should be chosen to operate within pre-determined limits and then 2 - 3 compressor units should be purchased and used depending on the medication. The Mobilaire 50 psi can be set between 1 psi and 50 psi, so that should be the only compressor you would need and it works with the Pari products and the Sidestream nebulizer.
This is just my 2 cents but I felt the need to say something to all who have cut pulmozyme out of your lives. This drug is the best thing we have that helps extend our lives. I have to agree with the person who wrote about the nebulizer machine and nebulizer you need to make sure the pulmozyme goes into the lungs completely and doesn't focus on just one part of the lung which in turns will cause bleeds after bleeds. I feel you should use the sidestream with your pulmozyme along with the Invacare Mobilaire 50 psi or if you want use the Pari Lc Plus or Star. I do my pulmo every morning 1 hour after my first albuterol and then my vest 2 hours after my pulmo which means within an hour I do my 2nd albuterol. I have bleeds regularly but just mostly streaking and I always keep doing my pulmo no matter what. I can't believe your DR's have told you to stop the pulmo that is just crazy. I hope you all have rethought about your pulmo use and hopefully you will talk to your DR and get back on the pulmo. Just remember pulmo is the only thing you have that will keep your sputum from getting thick and causing bacteria to grow in the lungs. Good Luck to everyone. Amy Sears 39w/CF and asthma, mrsa, bleeding lungs once in awhile
No offence, but I think the doctors who suggest stopping Pulmozyme have probably thought it through amy!! its a case of weighing up the pros and cons!! you only have streaking, so you can continue using it which is great. i get big bleeds when i use it, so have consequently stopped it, as the bleeds can be dangerous and be even more detremental as it makes the mucus twice as sticky and tough to shift. however i hadnt even thought of using it as and when needed, if i am really bunged up it would be v useful....this thread has been v helpful! thanks!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I agree that pulmo works for many CFers....but just like any medicine.....the same meds dont work for everyone and they have different affects on everyone. Pulmo makes my breathing more difficult....and I wheeze more...and it doesnt help me to cough mucous up. So I also no longer use it. For me....it is not the best medicine. I'm happy for those who can use it....Take care and good luck!Dea
Reply to the last two threads,It is my understanding that Pulmozyme shrinks the DNA or the polymers from dead cells (apoptosis) or from cells that have ruptured (lysis). These cells go through apoptosis and lysis in the face of bacteria and inflammation, which is normal with the exception that we need to down-regulated the inflammatory process which would reduce cell apoptosis and lysis.If you go to WebMD website and look up lungs, it gives a pretty good overview of how the lungs work. Bacteria and viruses prosper in the pulmonary alveoli sacs which are two micrometers in size or less (this is where the oxygen is exchanged into the blood stream) and this is a very important sight where macrophages go through apoptosis, so the Pulmozyme must reach this small area to shrink the DNA/polymers of the cell, so the body can slough the cells.Genetech in their most recent research state that you must have a nebulizer with a pre-determined limit such as the "Sidestream" or you could use the Pari LC Plus (50% of the particles are below 5 micrometers in size and 20% are below 2 micrometers in size) or the Pari LC Star (78% are below 50 micrometers in size and 34% are below 2 micrometers in size). These nebulizers all work within good pre-determined limits to insure that pulmozyme is well distributed throughout the entire lung and evenly, but because Pulmozyme is refrigerated is more viscous (thick), you must have a compressor that will have the pressure to break the medicine down properly to allow for proper flow rate and allow the nebulizer to function within its pre-determined limits. Example: Tobramycin needs between 12 - 18 (psi) (pounds per square inch) to break the medicine down properly, yet to break a more thick Pulmozyme down so to allow the nebulizer to function properly, you need between 35 - 45 psi (Mobilaire 50 psi) accomplishes this and you can adjust the pressure with each medication.Also, just because a compressor states that it can go up to 30 psi, you need to ask what the pressure is when the nebulizer is placed on the unit, because this will drastically reduce the compressors pressure. Example: Mobilaire 50 psi compressor needs to be set at the highest level (50 psi) prior to the nebulizer and medicine being connected, when the nebulizer and medicine are connected, the total pressure fluctuates between 35 - 45 psi and the Mobilaire 50 psi is a compressor that looks like a small engine.Please call the Cystic Fibrosis Foundation or email them, requesting information on their nebulizer and compressor studies conducted a few years back at the University of Washington - Good information - Educational etc..... I believe in the Cystic Fibrosis Care Physician and staff, but I am curious if anyone who has discontinued Pulmozyme has gone over (in-depth) the various nebulizer and compressor units on the market today and what each medicine needs to be fully beneficial to the cystic fibrosis patient.