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cheryl, i think you've voiced every asthmatic's fear about the change over from CFC to HFA inhalers.
i'm curious: what inhaler are you using and for what reason? how often are you using a rescue inhaler? have you tried a different brand with the new HFA propellant? have you talked with your doctor about yor concerns esp if you are still wheezing with the new HFA inhaler?
so many questions. ;-)
The FDA is currently making a determiniation on permanently banning the Primatene mist. If you are passionate about saving the Primatene mist inhaler like I am, please send your comments to the following:
FDA will accept WRITTEN comments (no e-mail comments) through
11/19/07.
PLEASE send comments opposing this to the FDA.
The letter must include the following information:
Docket No. 2007N-0262 and RIN number 0910-AF92
They can be mailed to:
Division of Dockets Management (HFA-305), Food and Drug
Administration, 5630 Fishers Lane, rm. 1061, Rockville, MD 20852
For some time now, epidemiologists have been puzzled over the jump in asthma mortality, despite improved medication.
I managed to get through to one of the top lawyers for one of the largest makers of inhalers and discussed this issue with him. I told him that although there was no literature on this subject at the time, it would behoove them to explore the role of Freon in this increased mortality. (Freon is the commercial name for the main type of CFC).
The cause of death among children inhaling paints and thinners from spray cans is heart stoppage due to Freon, the propellant. This is not in dispute.
How, I asked this attorney, if we know that Freon is killing those who abuse inhalant, does it make any sense to use it on asthmatics suffering acute paroxysms. I stated this was a very logical place to examine potential causes of increased mortality.
And indeed if you read the PDR it speaks of "paradoxical reactions, including death" associated with these inhalers.
Therefore, I think this move away from CFCs will also remove an exeptionally problematic ingredient from inhalers from a MEDICAL viewpoint.
Matt,
Thanks Sloane-
I had severe asthma from age 3 to 13 and moderate asthma afterwards until I was around 25.
It was pretty rough, no doubt about it, I must have had 50 shots of adrenalin, multiple rounds of cortisone therapy, and was continually jacked up on large doses of ephedrine, per doctor's orders.
So I have an abiding interest in the subject. I'm in my 50s now.
And when I heard about the surge in unexplained asthma related deaths, I decided to contact the attorneys for these companies and talk to them lawyer to lawyer.
I told them that getting rid of the Freon and the CFCs was a prudent step in light of what we know about the cause of death in most inhalation of propellant abuse cases.
And I told them that they were required to take steps after receiving my telephone calls.
Now, several years later, it looks like CFCs will be completely eliminated. Several years ago one company took the lead in this regard; that is the company I spoke to.
Looks to me like you are a big supporter of the HFA inhalers which for my wife and many like her have made the symptoms worse after taking them. My wife actually got ill after taking the ProAir HFA inhaler. Luckily we were able to find another pharmacy which still has a few CFC ones but we are very afraid of what will happen when they are gone. The problem that the FDA et al keep ignoring is that when having an attack the asthmatic in question is unable to take deep breaths (see definition of an asthmatic attack) and that is exactly what is being asked of them. Many of the new HFA inhalers also contain ethonol, and it seems that the higher the amount of ethonol the worse the results are. The big problem with the testing used when they were checking these out is that the test was done by giving the medication then putting the asthmatics on an excersise routing designed to induce an attack. While this will show that the medication works when it gets to the lungs before an attack, it does not show that it can get there DURRING an attack. That is the place where the problem starts. Then there is the whole thing about making sure that you have cleaned the delivery port. The new medication will collect on the port and start to block it. If you are having an attack the last thing you need is to be trying to think about when was the last time I cleaned this, what was that proper inhaler technique, etc. When you cant breath your next thought is where is my next breath going to come from. go to
http://www.ipetitions.com/petition/saveCFCinhalers/index.html
and read the comments from other people who have had problems (there were 217 this morning) and I cant find it anymore but I understand that there was an earlier petition out there that had thousands of signatures on it.
I had the "other" petition and yes, I did have over 1,000 signatures on it in a matter of 4 months. Petitions are a tricky thing I have found out.After it was verified, there were only 387 comments that were used for futher research. Many sign with fake names, emails and in general, after follow-up, were able to use some type of HFA inhaler. After several phone contacts and Doctors statements and media contacts, THE only path left was to close it and HELP patients Transition to the HFA inhalers. 1,000 sigs. or 10,000 will not stop the transition. I've had the petition closed since Aug. and I am still working on it. Proair is terrible, I became sick from it myself. Armstrong CFC does work...it's just not Warrick that we are all used to. So many things are still in the works right now. Good things are on the way. Ventolin HFA works good and Xopenex does too. Xopenex is a little cheaper and has a less jittery side effect. You have to try them to find the one that works for you...we are all different. Start now and PLEASE don't wait until it's too late for treatment.
For those of you interested in why CFCs are going away, check this out. Hopefully it is as helpful for you as it has been for me.
http://ozone.unep.org/Assessment_Panels/EEAP/eeap-report2006-FAQ.pdf
There are some really cool links in the unep.org web site as well...Keep dancing...TangoLou
Freon(brand name for refrigerants) is considered non-toxic. It does however displace air, since it is heavier. In large amounts, it can suffocate you in confined spaces. I have worked with the stuff for years, and have never suffered from toxic side effects.
Ethanol, which is in the new inhalers, is shown to have a negative effect on some people. Some asthmatics have an adverse reaction to ethanol. How does this effect them?
Matt, I suspect more is at stake then the ozone which is causing this ban. I will say that HFA is a poor substitute from my perspective and I have moved to portable nebulizer. I to use it during work outs as excercse or cold thick air triggers constriction. One thing I know for sure is that ProAir is a poor poor inhaler. They have gone flat on me at an alarming rate. Four dead red ProAir HFA inhealers and one yellow proventil. 1 CFC still working in by medicine cabinet. At 20 with insurance a pop I feel like I am being fleeced.
Not a convient answer but maybe a helpful one. Purchase a nebulizer and get albutarol or xponex in liquid vile form. I think you can even get a portable nebulizers now. I rely on Flovent and servent now but need the rescue inhealer now and then. Seems we are being herded away from CFC. Not sure the ozone is the culprit.
ODDLY ENOUGH, I DID GO AND BUY AN OMRON PORTABLE NEBULIZER. I WILL USE THE VIALS OF ALBUTEROL WITH IT. HOWEVER, IT JUST ISN'T AS STRONG OR SUCCESSFUL AS THE OLD WARRICK BRAND INHALERS. I ALSO UNDERSTAND THESE NEW INHALERS THEY SELL NOW CAN'T BE USED BY PEOPLE ALLERGIC TO "SULFA DRUGS".......(I AM)
I AM SURE THE AMT OF CO2 PUT INTO THE AIR FROM THE OLD INHALERS WOULDN'T HAVE HARMED A THING. JUST AN OPPORTUNITY FOR PHARMACEUTICAL COMPANIES TO SELL THE NEW ONES AT TRIPLE THE PRICE AND ONLY LASTING HALF THE TIME AS THE ORIGINAL.
The HFA inhalers do not work for me and I have tried all of them. I was very shocked to find out that the American Lung Association was one of the main supporters of the petition to ban the CFC (OLD) inhalers. They clearly state this on their website and it is stated in the US News and World Report dated October 19, 2007. (See Below) The A.L.A. needs to back other initiatives to save the environment before sacrificing patients health. There is currently an online petition at http://www.ipetitions.com/petition/saveCFCinhalers/index.html
to bring back the inhalers. Read below to see excerpt for article mentioned above:
"Two big patient advocacy groups, the American Lung Association and Allergy and Asthma Network Mothers of Asthmatics, support the FDA decision (TO BAN CFC MEDICAL INHALERS!)-and in fact helped spur it by filing a 2003 petition requesting CFC withdrawal. Both groups undertook CFC public awareness programs sponsored by drug companies. The ALA's "Time to Make the Switch" campaign was underwritten with $1 million from Teva, maker of ProAir HFA. The AANMA promotes "Smart Moves to an HFA Inhaler," sponsored by Sepracor. That company sells the albuterol-like drug levalbuterol as Xopenex HFA."
U.S. News & World Report, August 19, 2007
thanks for this link lisa to the petition...
clearly this transition is causing alot of anxiety and anger in the asthmatic community.
i just got my first inhaler last week but luckily havent had the occaision yet to try it out, yet.
i am nervous that it wont work properly but then again sometimes, in certain circumstances, my CFC albuterol inhaler didnt work either on my asthma.
quick question: how often are you using your rescue inahler? im just wondering how you tried every HFA inhaler?
Hi TangoLou,
You correctly state that I have said on forums that I use Xopenex HFA (in between breaks with Warrick CFC- since Warrick feels much 'cleaner' to my lungs, superior to Xopenex HFA by far)- then you criticize me for not telling the rest of you? Was I supposed to take out a full page ad in the New York Times? Was I supposed to do a direct mail piece to 30 million pulmonary patients? Please forgive me for not notifying you properly.
My advice to all patients, based on petition feedback, personal experience, and updated MedWatch data is that they try Ventolin HFA first (it's the only HFA rescue inhaler without ethanol- a bronchoconstrictor, believe it or not. CFC inhalers did not use ethanol). Not everyone can handle Ventolin HFA- I can't. I had a severe two day flu-like syndrome (no fever- just wiped out) several days after I started it, followed by a 24/7 sore throat/headache/earache. By the time I connected it to the Ventolin, I had permanent tinnitus- this was five months ago.
Since then, we have imported from the FDA's database four years of MedWatch complaints- including over thirty mostly MD-reported fatalities where the HFA rescue inhaler was deemed to be the primary (or only) suspect drug responsible for the outcome- along with many more severe outcomes. MedWatch complaints are underreported according to everything I've read.
It's worth noting that Xopenex HFA has a heavy concentration of serious cardiac adverse events- including many heart attacks. We know of at least one Duke MD who will not give Xopenex to any cardiac patients. We suggest, based on the above, that cardiac patients NOT take Xopenex HFA.
We don't know how many of each brand of inhaler was used during these four years, and MedWatch claims are raw, untested data. Also, we are relying on the FDA's data and we can not and do not guarantee the accuracy of their information. Having said that, Proventil was responsible for most of the reported fatalities. On Schering's homepage, they clearly state that "Rapid heart beat, vomiting, chest pain, and palpitation occurred more frequently with PROVENTIL® HFA (than with Albuterol CFC)." We do not recommend that anyone use Proventil HFA without first trying Ventolin HFA- and- if they are a non-cardiac patient- Xopenex HFA.
ProAir has generated more complaints on both petitions than any other inhaler. We do not recommend that anyone use ProAir HFA without first trying Ventolin HFA and Xopenex HFA if they have no underlying cardiac disease.
CFC inhalers do NOT harm the ozone layer- the amounts are too small. Within one-two years we think pulmonary patients will revolt against this absolute stupidity and with or without the blessing of the Montreal Protocol, CFC inhalers will once again return to the US- and hopefully global marketplace as well. There is no rational reason for pulmonary patients to suffer with these inferior, dangerous inhalers.
Art Abramson
The NationalCampaign to Save CFC Asthma Inhalers
http://www.ipetitions.com/petition/saveCFCinhalers/
P.S. If the link does not appear, google "save CFC" and the petition will appear at the top of the list
I am interested in understanding why the different companies have stopped making the liquid albuterol. I am now able to only get the Dey brand which does not open my lungs as well as the Warrick or Ivax brands. With lung problems being the 4th most prevalent disease in the U.S. why would companies stop making these brands? I have been told by pharmacists that it is usually a financial decision by these companies. Aren't there enough of us buying the products???
Sloan, they haven't stopped making the liquid, just many of the manufaturers have stopped making the product. The ONLY brand I have been able to find here in Michigan is the Dey brand which does not open my lungs as the Warrick brand would. I contacted Shering-Plough but was only able to speak with a receptionist who said "its not being made anymore." I attempted to contact Cardinal Health (the generick company manufacturing the product for Shering) who was manufaturing the liquid in a plant at Las Vegas and that plant is now closed. I haven't used google but will do that.
JoAnne
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glad to hear your symptoms are better. mine too, knock wood. last time i used my inhaler was feb/march.
maxair....hmmm if it's an inhaler, they too will be switched to HFA...have you gotten any notices about that?
oh me too! i hope my luck and both of our good health continues.
The proventil really worked the same for me.. I have COPD (severe emphysema).. however lately I have had a couple of issues with rapid heart rate.. Friday when I went to see my heart doc he said that Albuterol can raise your heart rate and said for me to discontinue using it for a bit and see if it makes a difference.. I was just wondering if after using it for at least 6 or 7 years if I would suffer any repercussions from stopping using it sorta cold turkey like that.. today is my 2nd day with out it and my chest does feel a little tight..?? not sure if it has anything to do with it.. The Doc said that Albuterol is mainly used for wheezing and I don't have that so he didn't think I needed it and to try not using it for a bit.. so that's what I am doing..Does anyone know if you get any like withdrawal symptons from stopping it or not?? Thanks.. Lyn