Am I the only person who pretty much VOMITS every time I try a turbohaler product? It hits the back of my throat and there goes everything I've eaten. that's very bad news and I have refused to use such products. I even tried using a throat numbing product first, but then i can't taste anything for hours. That's a totally unacceptable trade-off for me. It also makes my GERD unbearable, even with my medication to keep it under control.
For those of us with chemically induced asthma, there has been no attempt to find us substitutes. Now with a new group form those 'alleged' injuries from cleaning up the oil spill in the Gulf of Mexico little incentive to provide treatment that a will allow patients to live long lives. maxair is the only inhalant for small airway disease. Albuterol doesn't harm me, but doesn't help. The 'substitutes' use my asthma 'triggers' in the solutions. we went through this in the mid-nineties and Congress granted a waiver but refused to 'get into what kind of asthma one had."
Often when one has my kind of asthma one has been in a 'toxic disaster' and litigation is involved. Not because we want to be, but regular health plans won't pay if some one else should. Last time, I was contacted to present my well-documented adverse reactions for the hearing. When politicians talk about 'death panels' this is what is being referred to.
When preparing my filing for the hearings in '98, one major pharmaceutical spokesperson said to me." Oh, you're and environmental asthmatic, YOU DON'T COUNT." Thanks for the warning! A few years ago the only nasal steroid was discontinued leaving me with none. Azmacort canister was placed in an old nasacort container to use. We have the 'opposite' of an allergy. Antihistamines cause asthma for us. The maxair began making an auto inhaler that I couldn't inhale well enough to get the medicine into lungs and that canister was put in an old maxair container. ( PFC studies showed that the Auto inhaler resulted in lowered small airway figures. Using the old container brought them back up to the best possible for me. ( Which is still bad.) Prednisone has more severe side effects, but that may be the only recourse and a saline solution nebulizer ( to replace Intal) and try to get insurances to approve something that 'harms' the insurance liability industry with a 'stranglehold' on the FDA and other govt financed but international conglomerates running the programs. Many of us have become 'collateral' damage to those with power and wealth.
And watch out! testing protocols have been changed back to not detect the pulmonary hypertension which seems to be part of having our kind of asthma with resulting enlarged hearts and heart valve damage and doctors can justify guidelines met for oxygen. Walking up and down a hallway without an exkg attached will miss it! Been there! No monies allowed for even the most simple of cardiac treadmill plus oximeter. Check it out! I was injured 21+ years ago and am still alive and I've experienced every 'trick' placed onto the medcial profession to thwart our good doctors from providing the most successful and well known treatments. For those who can tolerate the 'substitutes' count your blessings. Some of us can't! Linda Joy Adams Facebook
I wouldn't be so quick to dismiss Intal and Tilade. They both have very side effects in most people, and although they are indeed mast cell stabilizers, Intal, at least, is not believed to function as a mast cell stabilizer in asthma, according to this Wikipedia article http://en.wikipedia.org/wiki/Cromoglicic_acid (see "Mechanism of Action" for what is known about Intal's "mechanism of action" in asthma, which cites the scientific literature). This is relevant only because for several years, I took Singulair along with Intal, and found that Singulair could not substitute for Intal; rather, I found them to be additive. I discontinued Singulair, however, because of its side effects. I liked Advair even less.
I would also dispute your claim that "Manufactures could easily keep these products on the market by changing the CFC propellant to an HFA propellant, such as what occurred with albuterol." Indeed, it may be true that "the change would not be cost efficient with these seven medicines," but as one who has followed the Intal saga, another "truth" seems to have emerged. This would be that Inyx, which contracted with King Pharmaceuticals a few years ago to manufacture Intal (and Tilade) inhalers for sale in the U.S. has apparently gone bankrupt. See http://www.in-pharmatechnologist.com/Industry-Drivers/Inyx-drama-highlights-crucial-need-for-due-diligence-on-contractors. The bankruptcy of Inyx has apparently also affected that the production of Azmacort, through a contract it signed with Kos, Abbott's subsidiary.
Note that Inyx was to produce not only CFC versions of Intal and Tilade, but later, HFA versions. In fact, King Pharmaceuticals had obtained an approvable letter from the FDA for Intal HFA http://www.thepharmaletter.com/file/46741/kings-intal-hfa-on-track-for-us-approval.html.
Now, as to the "could easily" replace the CFC versions of these inhalers with HFA versions, the article cited above (http://www.in-pharmatechnologist.com/Industry-Drivers/Inyx-drama-highlights-crucial-need-for-due-diligence-on-contractors) indicates that HFA inhalers are not manufactured in the same way as CFC inhalers, and that "It has taken the few in the industry who have such manufacturing capabilities between 10 and 15 years to develop them." Indeed, the article states that "Both Kos and King previously tried to develop the process [for manufacturing HFA inhalers] in-house but were unsuccessful and discontinued these efforts long ago." Moreover, the article says that "With Inyx USA out of action, it is believed that only around four other contract manufacturers in the world have the capability to commercially make and fill HFA devices . . . ." Also, only a few large companies, as well as a few smaller ones (cited in the article), "have developed this new capability for their own products."
Thus, the implication is that there is a capacity problem (for making HFA inhalers), which, of course, may also be a "cost-efficiency" problem for King and Kos. Indeed, one "expert" cited in the article says that "Any company wanting to move into this area of manufacturing would need at least five years to develop the expertise required. There are also not a lot of trained people in this field and most of those that are work for big pharma companies."
In the end, Intal HFA inhalers are available from a number of pharmacies outside the U.S., as are Tilade HFA inhalers -- though I believe pharmacies that sell Tilade HFA inhalers are not as numerous. Some of these pharmacies are cited in the Q & A you mentioned. In addition, cromolyn sodium ("Intal") nebulizer solution is still available in the U.S. from Teva Pharmaceuticals http://www.tevausa.com/default.aspx?UnitDose=True&productName=Cromolyn%20Sodium%20Inhalation%20Solution,%20USP&brandName=Intal%C2%AE%20Inhalation%20Solution&pageId=76. I currently use Tilade HFA inhalers, which I find to be more effective than either Intal HFA inhalers or the cromolyn sodium nebulizer solution.
You're welcome.
I wish these inhalers were available in the U.S., too, but judging by the price of (at least some of the) HFA (albuterol) inhalers now in the U.S., these inhalers may even be cheaper (in some cases) from foreign sources than they would have been in the U.S.
In any case, I've been getting my Tilade HFA (CFC-free) inhalers from Inhouse Pharmacy http://www.inhousepharmacy.com/asthma-allergy/tilade.html (no prescription required), in case that helps. I see they're out of stock at the moment, but I hope not for long. Their inhalers are New Zealand-sourced (at least, they have been), distributed by Aventis Pharma Limited, Auckland, although I believe the inhalers are actually made in England (the box says Aventis Pharma Limited, Cheshire, England).
Intal, I know, was invented in England, and Tilade was, too, I believe. Also, I believe England is the only place in the world now making Intal and Tilade inhalers. Even the cromolyn sodium ("Intal") nebulizer solution, distributed in this country by Teva Pharmaceuticals, is made in England.
Just as a bit of trivia, I believe the U.K. has the highest incidence of asthma in the world, and New Zealand, the second-highest incidence.
I have used aerobid for years and although it was not a preferred drug, I paid the extra since it worked so very effectively for me. So, I'm not pleased at all with these new developments. I'm using Flovent now and am hoping that the laryngitis I have isn't at least partially caused by it. I lost my voice totally when I tried Advair some years ago and will not try it again. So, things change but not always for the best for those of us who are losing an effective drug.
I am very concerned that the cromolyn inhaler has been "discontinued". This is the medication that saved my life when other meds did not work. It had no side effects and prevented me from having asthma attacks which allowed my lungs to recover and decreased asthma episodes from daily to every few years. It enabled me to reduce use of the albuteral inhaler and kept me out of the hospital. Before I started on the cromolyn inhaler I had several hospital admissions, one to the coronary care intensive care unit. My seizure med, Dilantin Kapseal, was also discontinued. What medication will be next? Who is monitoring this to prevent lives from being lost?
I understand and feel the same frustration everyone seems to be having. Asthma is almost winked at. As long as someone doesn't have the problem, they will never have sympathy reguarding it. Everyone always say, "take your meds and avoid your triggers, and you can live a normal life". I'd like to see them try it.
To say one drug has been found to work better than another doesn't take into account that Asthma is different in everyone, like, some say cold air is bad for Asthmatics, I always found that cold air improved my breathing. I haven't found ANY Asthma drugs to be effective in "controling" my Asthma. The adage that Asthmatics can live full normal lives if they just take thier meds and avoid their triggers, is a crock.
Just to dismiss any confusion, Chromolyn (Intal) will no longer be available in any form, and that includes inhaler or solution. You can check out this letter to pharmacists to learn more.
Except cromolyn sodium inhalation solution is (apparently) still available as a generic, from Teva Pharmaceuticals: http://www.tevausa.com/default.aspx?&pageid=76&TherapeuticCategory=Antiallergics&adr=generic.
I have Samters triad asthma and after looking at relevant studies that cromolyn sodium might be more effective than inhaled steroids. My doctor wrote a perscription but said I might have a problem finding it. I went to five pharmacies and none had it or could get it. I started calling about five pharmacutical manufacterers and the only one who said that they did not discountinue making it Was TEVA. However, they ran out of their supply and said they do not expect to have it available by end of May begining of June 2011. I don't know if Canada has the same shortage problem? Consumer Reports has advise on buy drugs from Canada: http://www.consumerreports.org/health/resources/pdf/best-buy-drugs/money-saving-guides/english/BestPrice-FINAL.pdf
I am going to wait intill June to see if I can get it here first. If not I am going to Canada.
Is there any chance you could substitute Tilade (nedocromil sodium) for cromolyn sodium? I don't have Samter's triad asthma, but I find Tilade to be more effective than Intal (inhalers) for asthma per se.
I get Tilade inhalers from Inhouse Pharmacy: http://www.inhousepharmacy.biz/asthma-allergy/tilade.html. Be aware, however, that in my experience, it can take anywhere from 8 days to nearly 3 weeks it get my inhalers from Inhouse Pharmacy -- depending on how long it takes for the inhalers to go through the postal inspection (or whatever they do) in the U.S., because Inhouse Pharmacy ships very fast.
While I agree that there are numerous newer ashtma medications available, newer isn't always better. At one time or another, my daughter has been on the majority of "newer" controller meds available. Unfortunately, she continued to have issues with controlling her asthma. Her pulmonologist finally placed her on cromolyn(Intal) aerosols 20 mg 2 times a day as a "last ditch" try. This made a tremendous difference - her peak flows increased 100 points within ten days of starting cromolyn aerosols. If Intal is the med for you, perhaps changing to aerosols from inhaler is an option.
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I was diagnosed just as the changeover to HFA was getting underway. The first and last time I was given a CFC inhaler, I found that it triggered a whole lot of coughing. I'm pretty glad HFA is available now, although the costs have, from time to time, been a challenge.