Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 There is an association between Churg-Strauss and Singulair. I don't think it has been shown that Singulair actually causes Churg-Strauss. But there may be some who disagree with me. I think the big concern is if people go off their steroids too quickly when starting on Singulair. However, there are many overlapping symtpoms with Samters and CSS. Are you worried because you have symptoms of CSS? Lori Coughing/asthma I have a question... do most of you cough when you have asthma? I really have a bad cough, and everyone glares at me like, "how dare you go out in public with a terrible cold!" I don't even notice I'm coughing.. as it has become 'situation normal' but the glaring is starting to get to me! Also, I read that in some cases Singulair can cause Churg Strauss. Is anyone familiar with this? this seems to be concerning. First, i was concerned with my liver and Zyflo. Michele Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 , Most of the symptoms you have listed below can be caused by dehydration. Foot cramps solved by more water was a surprise to me a few years ago. Respiratory stuff, constipation, and headaches are more common. I hope your solution can be this simple. BTW I always cough with asthma reactions. It is embarrassing. Pam On 7/14/06 9:19 PM, " michele bledsoe " <know_better_time@...> wrote: Lori, but is was clear when I underwent the aspirin desensitization ... that I was reacting to aspirin. So, maybe it's just the 'what if' panic coming out. I just feel like I have an entire grab bag of wonderful health problems... and each day I pick out different ones. Some days I have diarrea, foot cramps and moderate wheezing. Somedays, severe coughing, wheezing, sneezing. Other days... light wheezing, no sneezing, some coughing, constipated, and a headache. And I can't seem to attribute it to anything I do or eat. Does anyone else experience this? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 The weather and other factors can play a lot into this, so that is something else you could put in a medical journal (see my other post). When you say you underwent the desensitization and you reacted to aspirin - I am not clear what you are talking about. Are you talking about this in reference to the Churg-Strauss? Because, again, you can have both Samters and Churg-Strauss, AND you can be desensitized to aspirin even if you have Churg-Strauss (I believe). Or are you talking about this in reference to the aspirin desensitization not working -- saying that you were reacting to the aspirin even after you were supposed to be desensitized? I'm confused. Lori Re: Coughing/asthma Lori, but is was clear when I underwent the aspirin desensitization ... that I was reacting to aspirin. So, maybe it's just the 'what if' panic coming out. I just feel like I have an entire grab bag of wonderful health problems... and each day I pick out different ones. Some days I have diarrea, foot cramps and moderate wheezing. Somedays, severe coughing, wheezing, sneezing. Other days... light wheezing, no sneezing, some coughing, constipated, and a headache. And I can't seem to attribute it to anything I do or eat. Does anyone else experience this? Michele .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Yes, I was wondering why I was reacting to the aspirin even after I was desensitized. I felt great for a couple of days after I underwent the desensitization. But then slowly I started to feel worse and worse. I didn't realize it, until I was in pretty bad shape and realized I was having a reaction after I took aspirin. At that point, my system had broken down because I was having so many reactions (but wasn't really tuned in until i sat down to think about it) and I had a lung infection and couldn't get out of bed. Thinking back, it could have been that I think I started to ween myself off the Zyflo too. I thought I no longer would need it. So perhaps that played a big role. I don't like taking any medicine and this has really been a challenge for me (I feel like a walking medicine cabinet). But I'm not sure. A journal would have definitely helped. Michele Lori Baur <lori@...> wrote: The weather and other factors can play a lot into this, so that is something else you could put in a medical journal (see my other post). When you say you underwent the desensitization and you reacted to aspirin - I am not clear what you are talking about. Are you talking about this in reference to the Churg-Strauss? Because, again, you can have both Samters and Churg-Strauss, AND you can be desensitized to aspirin even if you have Churg-Strauss (I believe). Or are you talking about this in reference to the aspirin desensitization not working -- saying that you were reacting to the aspirin even after you were supposed to be desensitized? I'm confused. Lori Re: Coughing/asthma Lori, but is was clear when I underwent the aspirin desensitization ... that I was reacting to aspirin. So, maybe it's just the 'what if' panic coming out. I just feel like I have an entire grab bag of wonderful health problems... and each day I pick out different ones. Some days I have diarrea, foot cramps and moderate wheezing. Somedays, severe coughing, wheezing, sneezing. Other days... light wheezing, no sneezing, some coughing, constipated, and a headache. And I can't seem to attribute it to anything I do or eat. Does anyone else experience this? Michele . Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2ยข/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Hi all, Lots of food colourings are known to affect aspirin sensitive and/or asthmatic people - in particular Azo dyes:-Tartrazine, Yellow 2G, Sunset yellow FCF, Carmoisine, Amaranth, Ponceau 4R, Red 2G, Brown FK, Chocolate Brown HT, lack PN, Pigment Rubine (may be more?). Feingold suggests that it could be the above that trigger hyperactivity syndrome in children too.... Additives dangerous to astmatics or aspirin sensitive people:- Potassium benzoate Calcium Benzoate Ethyl 4-hydroxybenzoate Ethyl 4-hydroxybenzoate - sodium salt Propyl 4-hydroxybenzoate Propyl 4-hydroxybenzoate- sodium salt Methyl 4-hydroxybenzoate Methyl 4-hydroxybenzoate- sodium salt Propyl Gallate Octyl Gallate Docdeyl Gallate Sodium Hydrogen L-glutamate (Monosodium glutamate) Potassium Hydrogen L-glutamate (Monopotassium glutamate) Calcium diHydrogen diL-glutamate (calcium glutamate) Guanosine5' (disodium phosphate) Inosine5' (disodium phosphate) Sodium 5'-ribonucleotide who knows how many more!! Home cooking it must be then? Regards Andy (UK) > I was wheezing after I took it and also when I ate certain foods like almonds and anything with food coloring. Maybe it was something else that caused the breakdown. I just don't know. (a medical journal might have helped here....) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Whoa that info about the Zyflo is big .... I don't know of anyone who does not need or benefit from Zyflo or Singulair after desensitization! One of the reasons to be desensitized is to get off steroids or lower your dose of them, but if you were on Zyflo and started to wean yourself off ... wow that would explain it. Maybe you can really work on the omega-3s in your diet and the omega 3-6 ratio (more omega 3s, less omega 6s). I wish they would bring this supplement back on the market, called Airozin, but it doesn't look good. It was like a food supplement that was a leukotriene inhibitor. I don't know why it went off the market. I think the company folded. The stuff worked like a miracle drug for me and then I couldn't get anymore of it. I understand you feel like a walking medicine cabinet, but if you don't take the less harmful drugs, you may get sicker and need more harmful ones. I hate taking any meds, but it's now a part of my life, and my life is better for them. For some of us, this tradeoff is easier than others. Lori .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Just get one of those composition books from the drug store and keep it by your bed -- doesn't have to be anything formal. After a while you can get into a habit of doing it. In the beginning the more regularly you can do it will help, but then after a while you will find that you are more attuned to what is going on and can recognize patterns. It's important to try not to omit things, though, unless you're sure, because I know I have the habit of making the journal reflect what I think, rather than writing down what really happened and then learning from it. : ) Go back on the Zyflo and/or Singulair if you're not already and don't go off after desensitization. At least not until you are stable for a few months, and then if you go off and it happens again, you can know what it was. I guess in addition to the journal, changing only one thing at a time is crucial to piecing together a regimen that works for you. Because many of us can benefit from the same or similar things, but it needs to be tweaked individually for each person. Almond allergy is very common, btw. Your allergist doesn't understand the desensitization fully, because although the aspirin is an antiinflammatory, it's not going to "anti-inflame" the polyps. It can retard their growth, but they most likely will not get smaller. They have to be removed for the desense to work the best. So maybe this go around it will be better for you. I learned this the hard way, too. However, I do think it's more that you went off the Zyflo that made you get worse. Lori Re: Coughing/asthma Lori, Yes, you're right... a medical journal would help. I'm so unorganized at the moment with the chaois this Samter's causes. But I think if I want to figure this out, I must keep a journal. And I'm truly puzzled by the aspirin thing too. The only thing my allergist said is that he thought perhaps my sinuses were in such bad condition, that I was still having asthma attacks due to that and not the aspirin. At that point he wanted me to have the surgery. He thought maybe I would be able to avoid the surgery because he said the once desensitized, the aspirin acts as an anti-inflammatory. But I have to say, my condition deteriorated tremendously after a few weeks of taking aspirin. I was wheezing after I took it and also when I ate certain foods like almonds and anything with food coloring. Maybe it was something else that caused the breakdown. I just don't know. (a medical journal might have helped here....) But I'll try this all over again. And I hope it will work this time!! Thanks for all the information... about Churg-Strauss, and desensitization. And for advising the medical journal. I'm going to do it this time! MicheleLori Baur <lori@...> wrote: I still don't understand what happened with the aspirin -- you took it and you were not desensitized to it?? So now you went off of it? Or you went off of it because of the surgery? I don't think foot cramps and nausea are specifically symptoms of Churg-Strauss. In fact, I don't think foot cramps are symptoms of Churg- Strauss at all. (but I could be wrong) Lie I said, I have never heard of anyone not being desensitized to it. As far as it not working, if you were desensitized, but your symptoms were better, and you were on the full dose, 1300 milligrams a day, for several weeks ... I don't know. Also, Carol or someone, jump in here if I am wrong, but aspirin desensitization can help those who have both Samters and Churg-Strauss, right? I believe Carol has both and desensitization helped her. So desensitization "not working" would not necessarily mean you have Churg-Strauss. It's hard to sort out what's going on with you without a full medication list and all the symptoms, duration, etc. Do you keep a medical journal? I think it is very helpful especially when going through puzzling times to write down everything you do for several weeks -- your sleep schedule, what you eat, even what products you use such as toothpastes and mouthwashes, gums, candies, shampoos, etc., your medications, and any symptoms, and then look for a pattern. Lori See the all-new, redesigned .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Lori's right. You can have Samter's and Churg Strauss and the desens will still work. Carol Re: Coughing/asthma I still don't understand what happened with the aspirin -- you took it and you were not desensitized to it?? So now you went off of it? Or you went off of it because of the surgery? I don't think foot cramps and nausea are specifically symptoms of Churg-Strauss. In fact, I don't think foot cramps are symptoms of Churg- Strauss at all. (but I could be wrong) Lie I said, I have never heard of anyone not being desensitized to it. As far as it not working, if you were desensitized, but your symptoms were better, and you were on the full dose, 1300 milligrams a day, for several weeks ... I don't know. Also, Carol or someone, jump in here if I am wrong, but aspirin desensitization can help those who have both Samters and Churg-Strauss, right? I believe Carol has both and desensitization helped her. So desensitization "not working" would not necessarily mean you have Churg-Strauss. It's hard to sort out what's going on with you without a full medication list and all the symptoms, duration, etc. Do you keep a medical journal? I think it is very helpful especially when going through puzzling times to write down everything you do for several weeks -- your sleep schedule, what you eat, even what products you use such as toothpastes and mouthwashes, gums, candies, shampoos, etc., your medications, and any symptoms, and then look for a pattern. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 I guess, I thought if I wasn't allergic to aspirin any more... then I didn't need the Zyflo. I didn't begin to understand all this until after I went to my ENT in June. After I 'failed' the desensitization. Most of the stuff I've learned is on my own and through this group. Then my ENT explained the triad and Zyflo. He also gave me a prescription for Singulair. So maybe that is the missing piece of the puzzle!!! MicheleLori Baur <lori@...> wrote: Whoa that info about the Zyflo is big .... I don't know of anyone who does not need or benefit from Zyflo or Singulair after desensitization! One of the reasons to be desensitized is to get off steroids or lower your dose of them, but if you were on Zyflo and started to wean yourself off ... wow that would explain it. Maybe you can really work on the omega-3s in your diet and the omega 3-6 ratio (more omega 3s, less omega 6s). I wish they would bring this supplement back on the market, called Airozin, but it doesn't look good. It was like a food supplement that was a leukotriene inhibitor. I don't know why it went off the market. I think the company folded. The stuff worked like a miracle drug for me and then I couldn't get anymore of it. I understand you feel like a walking medicine cabinet, but if you don't take the less harmful drugs, you may get sicker and need more harmful ones. I hate taking any meds, but it's now a part of my life, and my life is better for them. For some of us, this tradeoff is easier than others. Lori . Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 Polyps/Aspirin:- I expect it depends on the size of the polyps. In my experience the aspirin almost immediately improved my nasal breathing (especially at night) and I do not now need nasal steroids to try and keep my nose 'open' 24hrs a day - that in itself makes it worthwhile - the 'holy grail' for me is sense of smell :>) Maybe my polyps were small and so more easily addressed by the anti- inflammatory action of aspririn - but I started on this whole aspirin densens. route because I could tell they were coming back after my first surgery and was determined not to go under the knife unless a last resort. As I understand it (shoot me down if 'wrong'):- if polyps are allowed to grow unchecked they eventually become vascularised and are then very difficult/impossible to 'shrink' with any topical nasal products - perhaps even oral steroids - this then most likely means surgery is the only way to shift them. Hope it helps someone.... Food additives 'evidence':- I refer you to the References chapter in " E for Additives " by Maurice Hanssen ISBN 0-7225-1562-6. Hopefully this will provide as much 'evidence' as you require. Regards Andy (UK) > > Your allergist doesn't understand the desensitization fully, because although the aspirin is an antiinflammatory, it's not going to " anti- inflame " the polyps. It can retard their growth, but they most likely will not get smaller. They have to be removed for the desense to work the best. So maybe this go around it will be better for you. I learned this the hard way, too. However, I do think it's more that you went off the Zyflo that made you get worse. > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2006 Report Share Posted July 16, 2006 Found this contact info for the manufacturer of Airozin. Seems like they are still in business. For General Correspondence Mail: Pilot therapeutics, Inc. 1110 North Chestnut Street Suite 105 Winston-Salem, NC 27101 Email: info@... Phone: (919) 991-5429 ie Quote Link to comment Share on other sites More sharing options...
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