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Hi everyone,

I've had many of these symptoms much of my life but they've really taken off steadily over the past year or so. I'm new to the diagnosis of asthma, not allergies, however. I've had allergies since I can remember, I will never forget my experience with penicillin the one time I took it as a child (twenty-nine now). A new GP finally sent me to see an allergy and asthma doctor recently and I was surprised to learn my lungs were functioning at around 52%. I had been using a Ventolin inhaler and never knew the asthma was a major issue for me. Many of the breathing issues, fatigue, shortness of breath, chest tightness, and other issues I just chalked up to anxiety and stress. I don't have much energy right now and simple tasks are exerting me. I guess I should've pushed the issue with my symptoms earlier and maybe things wouldn't have gotten as difficult as they are currently.

 My new asthma doctor started me on Symbicort and assigned me a spacer, however, he said the asthma is resistance to treatment thus far. My lung functionality has gone up to 60+%, I was naive to think that was a good, steady improvement until he told me it wasn't. I've been getting nebulizer treatments everytime I go in and have gotten a few at urgent care, they seem to help a lot. Unfortunately, my insurance wouldn't cover the Dulera he wanted me to start in place of Symbicort. Until that can be addressed I am currently on Symbicort, Spiriva, and ProAir as my rescue. I had some blood taken for an ABPA panel to see if something related to that is causing the resistance to the treatment he talked about (had it done today). I'm currently on a prednisone burst to help as well. I delayed posting on here for a while due to my embarrassment of neglecting my health or missing signs that I should've sought help sooner. It's been raining here for at least a week and it's gotten even worse, I'm not sure what to do at this point. I guess I'm looking for some support and hoping to meet some people who experience allergies and asthma in the meantime, educating myself on these two issues that I've neglected for years now. I look forward to reading what y'all have to say on the forum and taking in advice from people who go through these issues as well.

 

 

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  • Melissa G

    Hi and Welcome to AAFA! So glad that you found us! 

    I am so very sorry that you are struggling! Which  have you had done? And do you have a 

    I struggled with my asthma for a long time until I got my allergies under control. Do you take any medications for your allergies?

  • IA-TXFisherman

    Hi Melissa,

    Thanks for your response! I believe it was called a spirometry test? It was the one where it's hooked up to a computer and you try to blow out the candles. I currently don't have an asthma action plan, I downloaded the one from this website and will bring it in on my next appointment coming up. For medications, I'm taking montelukast and Zyrtec. The last appointment he mentioned he would probably switch me to a shot, which I assume would be an allergy shot. He sent me for the blood tests to try to gain an idea why the current treatment hadn't increased things at a better rate. I've been ill for a while and looking into all of it, it really makes sense as to some of the vague symptoms that have been a mystery. Just all kinds of stuff. I also use Flonase nasal spray and that has helped me to breathe through my nose a little more and reduce many of the sneezing…runny nose symptoms at least. Before I moved to Texas I had some breathing issues. I've always struggled with exercise if slightly when fit, with wheezing afterward and occasionally at night over the years. Allergies have always been a struggle and have been hard to manage. I am just glad to have finally gotten a referral to the allergy and asthma doctor! Once again, thanks for the welcome!

  • Shea

    Hi IA-TX Fisherman. I had allergies all my life as well but developed asthma and a severe allergic disease at age 28– approxamitely two years after starting a medication you mentioned taking called singulair. Some of my pulmonologists and doctors told me the previoysly rare severe allergic disease that I developed and was officially diagnosed with in the hospital after having a heart attack–caused by allergic blood cells called eosinophils surrounding my heart and choking it– is now being correlated with the medication Singulair, although causation has not yet been proven. So, I do not trust that medication, and I usually will tell anyone who mentions taking it my story with it, because no one ever told me about the increase risk of developing this disease or what to watch out for, nor did they monitor a very simple thing in my blood that can be seen in a CBC lab, called Eosinophils. My eosinophils were extremely high and if I was told that i formation and referred to specialists like an allergist, and stopped Singulair, and was educated more on WHAT I was allergic to and HOW to avoid those allergens properly– and on the severity of my condition!– I could have avoided nearly dying and permanently harming my heart function. My symptoms started much like yours, with a start of asthma symtoms I had never had before and the need for courses of prednisone to get through them but them often coming back after stopping prednisone….but a lot of asthma is "allergic asthma" and a lot of allergies can cause eosinophils to be higher, the difference in my disease (called churg-strauss syndrome) is that the eosinophils cause inflammation in all the organs (heart, lungs, blood vessels, skin, GI track, etc).

    They do not officially know the cause of Churg-Strauss Syndrome but they have tied its increase in the population to Singulair use… and my personal theory is that I started taking Singulair after I asked my then- primary-care doctor if there was anything I could take to help me with my cat-dog dander allergies because I was dating a guy with cats and a dog. He told me to try Singulair and it worked like a charm at first– I previously couldnt be around them for 15 minutes without eyes watering, wheezing severely, sneezing and stuffed up but after taking it I could even pet them and nothing! Well I ended up moving in with the guy and was fine for 2 years when I started developing asthma symptoms (and I had never had asthma before). That is when things spiralled out of control. I thought about it being related to allergies although my allergies were not acting like they used to before singulair– and my theory is that the singulair stops some of the symptoms of allergy but at a blood level I was having mass inflammation (which could have been seen in my high eosinophils if doctors had looked and informed me). After the heart attack I had a group of specialists and was told not to live or be in a home with cats or dogs and now my reactions to cat and dog dander are so severe they can cause an asthma attack along with allergy symtoms– even to dander alone. Now I use some medications a regular asthma patient might use– I use Flovent (an inhaled steroid that I tolerate better than the inhaler you mentioned called symbicort, and works better for me and my insurance covers it) and Combivent (which is albuterol and ipatroprium bromide) inhalers but I keep a nebulizer at home too because when my asthma is severe like during an attack the nebulizers are the only thing to stop it so having one at home has helped me avoid ERs and Urgent Cares– and I use two solutions in my nebulizer, one is called budesonide (an inhaled steroid) and the other is a combo of albuterol and ipatroprium-bromide). The most helpful specialist that I have seen allergist/immunologist because they can do allergy-testing and give avoidance advice, they can also do lung-function tests and prescribe inhalers, and test blood cbcs for eosinophils– they are also aware of new medications and injections that can help get bloodwork back to normal if you do not respond to the first methods. I have found this group and forum very helpful because it took me a while to learn my triggers for asthma and hiw to live with very sensitive lungs and severe allergies, including tips and tools people use just to do everyday life type of things. Oh and you are not alone in feeling like you messed up by letting your symtoms get out of whack– it is so easy to do because society kind of downplays allergies and you can sort of get used to not being able to breathe well and suffering without knowing how bad it is– so dont feel bad because it is very normal to happen. I am glad you found this forum and believe you are on your way to feeling better!

  • IA-TXFisherman

    Hi Melissa,

    That sounds horrible =/. I've had some slightly elevated WBC's, along with the ABPA panel the doctor also ordered a CBC. I've had slightly high counts of WBC's, granulocytes in the past. I've had a bunch of like, weird symptoms that might not always present from asthma but might from a little research I've done such as vomiting, weight loss, etc. The past three days I've been so, so tired it's hard to do much of anything and that's while on this prednisone burst. I've been on the montelukast for around a year give or take. CT scans for past kidney stones show something with the lungs, I do feel pressure in my chest area which I think is my lungs. Mentioned it in the past to the previous GP and she said it was nothing to be concerned about. I've been sleeping as much as I can working full time, going to school part-time, and all these doctor appointments. It's exhausting, I feel like I'm barely treading water. I'm allergic to cats and dogs, I have three but I can't let myself to get rid of them. I've had the animals for so long they've become part of the family. I know that sounds dumb on my part, but when they all leave us then my wife and I will go petless. Like you, I feel the montelukast has helped in those regards. I'm not sure if there is any correlation between that medicine and increase of feeling unwell. but sounds like the doctor is running the CBC to find out and he did mention the eosinophils you mentioned in the last appointment. In Texas, roaches seem to be all around and currently, there are some in the house, I'm allergic to those. Seems even with a clean home you'll have some around down here. You mentioned allergic asthma and I'm sure that's the type I have, the current doctor hasn't come out and said it though. I've had the skin scratch test again recently and like when I was a kid, tons of stuff I was allergic to. I feel like I didn't respond well enough to all you said, if I left out anything important let me know1 I'm sorry you have had to go through all of that but it's encouraging as it sounds your doing better now despite all you have been through. thanks for the reply!

  • 09kellyann

    Welcome to the group!

    I am both excited you have found a support group and sad that you had to. It sounds like you have been having a very hard time. I cannot imagine working full time and studying part time with your lung function results.

    It sounds like your already on top of things with your doctor and leading the way to a new normal. 

    As a recent asthma diagnosee there are a few things I wish I would have known when it first happened. 

    1. No one really understands (except here). Asthma is thought of as an easily manageable disease by your average Joe.  

    2. Track your self. Weight, PFT, medications, diet, exercise, insect issues, weather, stress… I am always surprised by long term asthmatics have learned to cut out and made a huge difference. I have no allergies, but sugar, shrimp, and processed foods will almost always cause some discomfort. 

    3. There are going to be terrible days. Days you cant even talk on the phone to cancel the things you are supposed to do. Set up a protocol for this. Have someone who can call your work, pick up your kids, and let your animals out if you have to go to the hospital or can barely function. 

    4. Reduce your allergens. Buy an air purifier for your room, ditch the extra fluffy rug, stick with hardwood floors, consider a diffuser… You have pets and they're lovely, but keep them out of your bedroom. The majority of the air you breath in everyday is where you sleep and indoor air can be a lot worse than outdoor. 

    5. Explain to everyone you know that they cannot spend time with you when you are sick. Steroids severely compromise your immune system (something they almost never warn you about) and any cold can bring you down for a very long time. 

    6. You'll learn a lot about yourself. No matter who you are I find that this illness gives you an excuse to understand and better care for yourself. You cannot take care of anyone else if you cannot take care of yourself. 

    You may already know all of this, but these are some of the best points of advice and most crucial things I have learned. 

    Good luck on your journey for wellness and watch out for those prednisone side effects. The mood swings and insomnia always drive me crazy. 

    Kelly

  • Shea

    Well.. I have learned my lesson with living with pets with fur. Never. Again. Not worth it. And if I had waited for the pets (all elderly) to die.. It would have been an extra 5 years– I would be dead for sure. I dont want to die for that. 

  • IA-TXFisherman

    Hi Shea,

    I didn't mean any disrespect and I totally understand! You did the best thing. No doubt about it. I hope it didn't come across as that. 

  • Shea

    Hi IA-

    No it didnt come across as that. I just wanted to … Convince you not to wait until your pets die to live allergy-free I suppose… because I worry about what happened to me happening to others like yourself, and bc I never got the warning on how serious allergies and asthma and -related diseases can be, so I wanted to sort of be that warning for others like you, as they assess all their options and make their decisions.

    My parents, for instance, did find a relative to watch the elderly family dog once they learned the severity of my allergies and got notes from my immunologist– so IF it ever comes to something where you cannot get symptoms under control with pets and you know they are triggering an allergic response in your body and causing inflammation, just know that there are possibly options out there like that.

  • K8sMom2002
    IA-TXFisherman posted:

    I delayed posting on here for a while due to my embarrassment of neglecting my health or missing signs that I should've sought help sooner.

    First of all, absolutely NO need to be embarrassed. When you know better, you do better. I'll be the first to confess that when I was first diagnosed with asthma, I had no idea I needed to take an inhaler with me 24/7. I've learned a LOT from this community!

    I hope you will, too! Welcome … Like Kelly, I'm glad you found us, but sorry that you needed to! I love her suggestions! 

    And Shea has taught me a lot about how allergens can affect us as well. It sounds like your doc is digging deeper to see if there are any other causes, so if your story is like Shea's, then I know your doc will help you figure out what you need to do from here. 

    Each of our journeys is different. We aren't all triggered by the same thing, and we don't all respond in the same way to meds. I will say that even small improvements (that 8% lung improvement that you had) should be celebrated!

    I've learned to look at trends … maybe one day or another is not so great. But am I going in the general direction that leads to feeling better? Asthma is not a disorder that has a single silver bullet fix … it's more like a tipping point kind of deal. 

    So as you adjust and track things and discover little things that work for you, I'm hoping you will find better days!

  • Deborah Bartlett

    I have read all the responses here. Gee….sounds like it's all been said. It feels good to hear that this sounds like me and you all understand, but it feels sad that we are all so sick. Yes…all of us need to manage our illnesses as best as we can. I was diagnosed with COPD and asthma a little over 5 years ago. Life can be very tough at times, but always keep a positive outlook each and every day. 

    I am on this routine right now: After getting out of bed 2 puffs of Bevespi Aerosphere for maintenance. 2 and a half hours later an ample of Budesonide in my nebulizer. Late afternoon another 2 puffs of Bevespi. An hour and a half later a Montelukast tablet. Before bed Budesonide in my nebulizer. Pro Air for rescue. I always have Albuterol ampules for my nebulizer in case I don't have enough breath to take a puff. If I am feeling cloggy I can use the Pro Air right before I go to sleep. I am taking a 50,000 IU vitamin D2 capsule once a month until the doctor tells me to stop. I see an immunologist also. He has been a great help. I try to avoid triggers. Sometimes they tend to sneak up on a person. I have had to change a great many aspects of my life. I don't mind because I want to stay alive and well for as long as I can. I also have psoriasis and eczema now. I have prescription cream for those problems. My fingernails are split right down the middle and my toenails are growing down into my toes like cable staples. My front teeth are starting to crumble. All side effects from meds. I am very active. I am a homemaker. I do the best I can each day. We are all here for each other. That's a wonderful thing for all of us to know and to have. Enjoy your day….. Debbie

  • K8sMom2002

    Hugs, hugs, hugs, Debbie! It is frustrating that meds to help us breathe can have such a big impact on every other part of us. 

    I look forward to your wonderful perspectives and your attitude — thanks for being here and speaking up!

  • Brenda Silvia-Torma
    K8sMom2002 posted:

    I look forward to your wonderful perspectives and your attitude — thanks for being here and speaking up!

    Debbie, I second Cynthia's comment about your perspectives and attitudes!  

  • Brenda Silvia-Torma
    IA-TXFisherman posted:

    I delayed posting on here for a while due to my embarrassment of neglecting my health or missing signs that I should've sought help sooner. It's been raining here for at least a week and it's gotten even worse, I'm not sure what to do at this point. I guess I'm looking for some support and hoping to meet some people who experience allergies and asthma in the meantime, educating myself on these two issues that I've neglected for years now. I look forward to reading what y'all have to say on the forum and taking in advice from people who go through these issues as well.

    Hello @IA-TXFisherman, Welcome to the group! You've come to the right place! This group has helped me become better educated about my asthma diagnosis when it changed from intermittent to persistent…no question is silly and everyone is rooting for each other 

    Don't feel embarrassed about missing signs–you are working full time, going to school part time, have a family and are trying to get through each day with a chronic illness. I try to think of how far I've come instead of wishing that I had done things differently–Trust me, sometimes that is easier said than done!

    You've come a far ways too!  I like Cynthia's comment about when you know better, you do better…and that even little things should be celebrated. From your doctor's perspective, your increase in breathing capacity is not as high as he would have expected, which is why he is concerned. So, I'm glad that he is addressing potential asthma treatment resistance issues. 

    Are you affected by air quality at all? I believe that is what caused my diagnosis to go from intermittent to persistent. I was having asthma attacks when I was outside during yellow and higher air quality, which is pretty much most of the days in the metro DC area. Community folks suggested that I wear a Vog mask, and boy that has changed the quality of my life significantly for the better.

    The EPA has a great site for finding out what the air quality is in your area. Visit: . 

  • Deborah Bartlett

    Cynthia….thank you. Sending you a long distance germ free hug! Brenda.. …hugs and food that's safe for you to eat are coming your way! Thank you all. You make me feel good being here with such a lovely group of people. 😂

  • Brenda Silvia-Torma
    Brenda Silvia-Torma posted:
    Are you affected by air quality at all? I believe that is what caused my diagnosis to go from intermittent to persistent. I was having asthma attacks when I was outside during yellow and higher air quality, which is pretty much most of the days in the metro DC area. Community folks suggested that I wear a Vog mask, and boy that has changed the quality of my life significantly for the better.

    The EPA has a great site for finding out what the air quality is in your area. Visit: . 

    Here's a AAFA blog article that might be helpful to you!

    • AAFA Blog (July 2018):
  • IA-TXFisherman

    Hi Brenda,

      I'm feeling a little better! The rain has stopped for a bit and I think that has helped. The Spiriva being added has seemed to help as well. So sorry for the late response everyone, I've been so busy and just lack energy. I have been trying to take it easy and just relax. I've been mostly inside and have really, really appreciated everyone's kind words, advice, and suggestions! I have purchased an allergy bed protector and pillowcases. We've moved the cat's litter boxes to the room furthest from the bedroom and haven't been allowing them to sleep with us. We've also increased vacuuming from every day to every day in the bedroom. I feel like everyone's input has made a difference already and I'm overwhelmed to all the support I've gotten.

     I am still pretty lethargic, it was bad over the weekend and so I pretty much took it easy. I do feel I've gained some energy back and that things are moving in the right direction! Still hacking (well, was attempting to get it up previously) up mucus but it's coming up now instead of feeling like it's so deep in my lungs it won't come up. I think that's a great thing. Going to look into getting an allergy filter for the central air unit and one the bedroom specifically. I'm not feeling as winded when I do simple activities and am able to move at a quicker pace.

     This past weekend was awful and was afraid it might be getting worse, however, when the rain has cleared outside it has improved. I checked out the air quality website provided and San Antonio's air quality looks like it's good currently, however, that might affect me at times. I bookmarked it and will try to keep track of things better now. As far as things that bother me inside and outside of the home. With all of your help, I feel I've made some improvements. The support has overwhelmed me and I'm very appreciative of it. I apologize for the lack of an in-depth response, just wanted to thank you all and let you know I've read everything everyone has said and taken it to heart. I will be around for sure soaking up as much advice as I can and lending support to everyone.

  • Melissa G

    so glad to hear that you are starting to feel better! The air quality and weather can definitely mess with asthma. I hope you are able to get some rest this weekend. 

  • Brenda Silvia-Torma

    Yay for feeling better!! Coughing up the phlegm is definitely better than having it hang out in your lungs So glad the suggestions are helping and that you are seeing some improvements…even if there is a step backward after two steps forward, you're still moving in the right direction (one of my favorite quotes says that that is a cha-cha)

    I hope this weekend gives you time to rest and recuperate.  

  • IA-TXFisherman

    Hi everyone, a bit of an update. So my lungs are up to 70 some percent now. The doctor said he's happy things are trending in the right direction. We went over my blood work and he discussed a drug called Xolair with me and he said I seemed like a good candidate. We went over the risks and benefits, I decided to go for it. I signed the paperwork today and he gave me a "sample" aka the first series of shots while I wait to see if my insurance will cover it. He also tracked down a Dulera sample and told me to try it, saying if it works like he thinks it will…he'll have more ability to potentially get my insurance to cover the Dulera. It sounds like things are going in the right direction. Hope everyone is doing well on their journey and I will be back again as soon as I'm able! Things have at least seemed to have gotten a little better.

  • Shea

    IA-TX, I am glad to hear you are experiencing some improvement in lung function, and that your doctor is monitoring your blood work.

    My advice is to pay attention to anything in your labs that is high– especially eosinophils (they are in CBCs and are the allergic inflammatory blood cells I mentioned before that my old doctor never told me were super-high and developed into a serious chronic disease for me). Xolair is often prescribed to lower eosinophils, working indirectly though IgE blood cells to lower the eosinophils.  I have heard of people having good results with Xolair– from what I have been told it takes a few months to see results. I actually tried it for a year for my disease, but did not see results in bloodwork or my symptoms, but others on this forum have seen good results. Then I tried Nucala, a similar medication that works directly on eosinophils, after the xolair, and I did see results with that– but it is expensive and my assistance program ran out of money so I had to stop it. If your insurance doesnt cover xolair, you can ask your doctor about assistance programs out there that help, I had one for it when I tried it for a year– there are often really good ones out there.

    I think it is great you took extra steps to lower dander in the home too. Cat dander is sticky and tough to keep in one area because it goes through a/c vents and sticks on clothing and shoes, to feet as you move through rooms, and even to the insides of lungs as you breathe it in– sticky stuff– thst is why so many people have bad cat allergies. There have been studies saying things help lower dander– like extra cleaning with HEPA vacuums because regular vacuums can stir things up worse sometimes as dander is very small HEPAs are better at capturing it– but if cat dander is the culprit than its going to be tough to live with them, and the studies show that although some methods can lower the amount of dander, it doesnt do it enough to show any affect on asthma/allergy symptoms themselves in people sensitized to them. I struggled for a long time trying to minimize dander too because of living with pets I was allergic to. It took me a while to realize that, for me, my allergic sensitivity was too high, and symtoms too severe. and I had to live dander-free … and it was not easy for me– I was pregnant, sick, and working, and the baby's father wouldn't find a home for the cats so I had to move out because it was his house. It was not cool to be prioritized under pets, but I had done it to myself for a long time first and I had decided to chsnge that. So, not saying you have to, just saying you just make sure you put your health first!

  • IA-TXFisherman

    Hi Shea,

     Thanks for the information and kind words. My IgE levels were high but the eosinophils were at the level to go with the Xolair is the way I understood it. He said he's thrown the kitchen sink at it and he's encouraged it's trending upwards every time I go in even if it's not as rapid as he first hoped. I got an air purifier for the bedroom as well. Haven't gotten the dehumidifier yet but will this Friday when I get paid again. The dehumidifier will be the next item to get. Thankfully working at QVC here in San Antonio, I'm sure I could get a good deal on a HEPA vacuum. My shark was I believe, however, it's pretty old and we need a new one. 

     That really, really stinks your insurance wouldn't cover the Nucala… I don't understand how these companies justify not covering these medicines when it could save them money in the long run by avoiding people like us going to the ER, urgent care, or being hospitalized potentially. It's like some companies take a gamble that we'll never get ill enough to get to that point. It's pretty sad. It's like they don't trust the Doctors. I'm sorry the situation with the cats and him not relocating them, that's awful. Your right, if it comes to that point I will need to do what you did and take care of myself as you did.

  • Brenda Silvia-Torma
    IA-TXFisherman posted:

    That really, really stinks your insurance wouldn't cover the Nucala… I don't understand how these companies justify not covering these medicines when it could save them money in the long run by avoiding people like us going to the ER, urgent care, or being hospitalized potentially. It's like some companies take a gamble that we'll never get ill enough to get to that point. It's pretty sad. It's like they don't trust the Doctors. I'm sorry the situation with the cats and him not relocating them, that's awful. Your right, if it comes to that point I will need to do what you did and take care of myself as you did.

    I agree with you 100%!! 

  • K8sMom2002

    IA-TXFisherman, so glad things are trending in the right direction! And I'm glad that your doctor is working through all your options. These drugs can be super expensive, but there are some programs that can help. AAFA has an resource of . Not everyone is eligible, and not all of the programs currently have funds. 

  • Shea

    Thank you IA-TX, and Brenda for your empathy and understanding. The insurance did cover a portion of the Nucala but the out of pocket was too high for me be sure it is such an expensive medication. The assistance program covered it for a bit but when their funding ran out I had to stop. Maybe it will go down in price in the future, but I am doing OK right now… Just have to take a  maintenance dose of prednisone to keep my eosinophil in the normal range and asthma in check.

    I have heard Shark makes a good HEPA vacuum. And IA-TX I am glad your showing consistent improvement! That is very encouraging, and your doc sounds knowledgeable.

  • K8sMom2002

    IA-Tx, how are things going with the Xolair? I hope your insurance has approved it and that it will make some difference!

  • IA-TXFisherman

    Hi K8SMOM2002. Thanks for the reply. UHC won't cover Xolair, the Dulera ran out four days ago and they won't cover it. Things were going well and tonight was the first night back in the ER in a while. I've been busy with stuff and work is going much ebtter than my classes, but…I won't get into that. I spent awhile in the Er and they got it from heavy wheezing to minimal and was released. This happened when out and about today. I'm not sure what happened, but I do know for some reason strong perfume or cologne seems to mess with me as well. People at work (even though they aren't supposed to) spray it  The doctor said to call into work and the side effects from the stuff was crappy as we all know it can be. They had me do three treatments back to back to back. I never had done that before. I'm so stressed I'm going to lose my job, maybe I should drop of out school until this gets under control. I've been told not to get to stressed but we all know that's easier said than done. It seems to have helped greatly getting the house dusted, vacummed, air purifer, and getting pets out of bedroom. (Started raining again, no more dulera, then it trends down again. Maybe confidence) But things are still going on outside the home and sometimes inside as far as symptoms. It just such a shame…the Dulera seemed to be working much better for me than the Symbicort. I don't know you all endure this and I hope for the best for other new people coming on here and all over dealing with this stuff.

     

    Btw K8SMOM2002, I did sign up for the one my doctor gave me for financial assistance. I did forget to look into it more tomorrow like you said though, other options. I will do that tomorrow.

  • Melissa G

    I am so sorry you ended up in the ER!  How are you doing this morning?

    Have you tried appealing the denial on the medications? We have been down this road a few times. It is frustrating and time consuming, but for us it has paid off, and we have gotten medications approved. 

    Do you have an advocate with your insurance company to help you navigate the denials?

  • IA-TXFisherman
    Melissa G posted:

    I am so sorry you ended up in the ER!  How are you doing this morning?

    Have you tried appealing the denial on the medications? We have been down this road a few times. It is frustrating and time consuming, but for us it has paid off, and we have gotten medications approved. 

    Do you have an advocate with your insurance company to help you navigate the denials?

    Hi Melissa,

    I feel better thanks. I haven't tried to appeal denials or have an advocate to deal with the insurance company. The Blue Cross Blue Shield starts on the 31st of this month. Hopefully, they will be better. I will have to look into the advocate through insurance, never knew it existed. While I have this open, a few questions for anyone that might know.

    -Do any of you have sleep apnea? Is there really a connection between the two? 

    -I know this is a long shot, but I using dip tobacco. It may not be cigarette smoke, but beginning to wonder if it's possible it could impact things as well? Has anyone heard anything about this in either direction?

     

  • K8sMom2002

    You probably are already aware that the . I don't know of direct links to asthma. However, according to the CDC it's known 

    • [to be linked to] cancer of the mouth, esophagus (the passage that connects the throat to the stomach), and pancreas (a gland that helps with digestion and maintaining proper blood sugar levels)
    • Is associated with diseases of the mouth

    So I wouldn't be surprised if it is connected with reflux, which IS a trigger for asthma.

    Could you talk to your doctor and take a look at the American Cancer Society's resource on ?

    I surely hope your insurance company can help you with your medications — ugh on the stay in the ER and things being worse than usual! I hope you don't have to quit school. Your education is really important!

  • Shea

    I did not like Symbicort either, but really like Flovent HFA– its a inhaled steroid– I think Flovent might be easier to get covered, (it was for me)– so it might be worth asking your doctor about it? 

     

  • Melissa G
    IA-TXFisherman posted:

    haven't tried to appeal denials or have an advocate to deal with the insurance company. The Blue Cross Blue Shield starts on the 31st of this month. Hopefully, they will be better. I will have to look into the advocate through insurance, never knew it existed. While I have this open, a few questions for anyone that might know. 

    I didn't know you could get an advocate either, and I need to correct the terminology I used, they are actually called "care coordinators". We have Blue Cross Blue Shield. We battled a huge denial the beginning of the year with a medication my youngest daughter needs and our pediatrician is the one who told me about the care coordinators. They are absolutely amazing! 

  • IA-TXFisherman
    K8sMom2002 posted:

    You probably are already aware that the . I don't know of direct links to asthma. However, according to the CDC it's known 

    • [to be linked to] cancer of the mouth, esophagus (the passage that connects the throat to the stomach), and pancreas (a gland that helps with digestion and maintaining proper blood sugar levels)
    • Is associated with diseases of the mouth

    So I wouldn't be surprised if it is connected with reflux, which IS a trigger for asthma.

    Could you talk to your doctor and take a look at the American Cancer Society's resource on ?

    I surely hope your insurance company can help you with your medications — ugh on the stay in the ER and things being worse than usual! I hope you don't have to quit school. Your education is really important!

    K8sMom2002 posted:

    You probably are already aware that the . I don't know of direct links to asthma. However, according to the CDC it's known 

    • [to be linked to] cancer of the mouth, esophagus (the passage that connects the throat to the stomach), and pancreas (a gland that helps with digestion and maintaining proper blood sugar levels)
    • Is associated with diseases of the mouth

    So I wouldn't be surprised if it is connected with reflux, which IS a trigger for asthma.

    Could you talk to your doctor and take a look at the American Cancer Society's resource on ?

    I surely hope your insurance company can help you with your medications — ugh on the stay in the ER and things being worse than usual! I hope you don't have to quit school. Your education is really important!

    Hi again K8sMOM2002,

    I know the risks and it's certainly linked with stomach issues, the mouth stuff. Like cigarettes it's very addictive. I've quit for a few times, the longest being a little over a year before. I'm very allergic to cigarette smoke and was around it constantly as a child. I see the doctor tomorrow and am going to discuss the chew. It enters your bloodstream rapidly and you get a "buzz" (not like drinking, it's hard to explain). Of course, as an addict, I find many excuses not to quit. If he says it could be or is contributing, I will quit for sure. I need to quit regardless. As far as classes, I won't quit for good. I just feel like I need to put my health first and take a hiatus. Math takes so much effort and I don't have the energy with everything else going on to be successful right now. That's okay though, sometimes a step back is needed. I'm hopeful I'll get better. When the weather changed again it didn't help and it's been raining constantly again. My body might be adjusting to the weather changes. Thanks for the information

  • IA-TXFisherman
    Shea posted:

    I did not like Symbicort either, but really like Flovent HFA– its a inhaled steroid– I think Flovent might be easier to get covered, (it was for me)– so it might be worth asking your doctor about it? 

     

    Hi Shea,

    It just doesn't seem to be as effective (in our cases anyways). The combination of Spiriva and Dulera seemed to be helping better. I will ask about Flovent HFA. I know there was a list they gave me and I showed him, however, I know he didn't like what they had said they would cover. I don't think Flovent was one on the list, however, maybe it will be this time around if the Dulera isn't covered with BCBS. Thanks for the information and will ask tomorrow.

  • K8sMom2002

    IA-TXFisherman, no need to apologize to me. The only folks who owe any of us an apology are the manufacturers of tobacco products! My mom was a pack-a-day smoker for years, despite her asthma and her COPD, and she tried to quit many times. She did eventually quit, and I credit the last few years of her life that I had with her to that decision.

    I know it takes a lot of support … and you can certainly get that support in a lot of different places. We're here for you, no matter what your decision, whether it's quit now or quit later.

  • Brenda Silvia-Torma
    IA-TXFisherman posted:

    I see the doctor tomorrow and am going to discuss the chew.

    Hi IA-TXFisherman, how are you doing today? How was your doctor's appointment?

  • IA-TXFisherman

    Hi Brenda,

    He added QVAR 80 MCG until the Dulera will be covered or something. I've been pretty down. Depressed I guess. I just feel like I'm at my witts end sometimes. The stress and anxiety…depression doesn't help but just unsure what to do anymore. We discussed the fact that not all my triggers are neccesarily allergic in nature. Such as my anxiety levels, etc, etc. I'm sorry for complaining everyone. I know many here have it far worse than me and many others out there. I'm just trying to keep it all together, especially for my wife who has been so supportive. I'm lucky to have her and all of y'alls support. Without that I would be utterly lost right now. Things are as good as they can be without the xolair and dulera I guess. They will submit when new insurance takes over the 31st. I will see how it goes. I mentioned Flovent but he decided on QVAR. My thoughts are with everyone on here and elsewhere as we deal with this stuff.

  • Brenda Silvia-Torma

    Hi @IA-TXFisherman, I'm so glad that your wife has been supportive and that you found the AAFA community–we're here for you and understand. It doesn't matter how few symptoms a person has, or how many…it's still a struggle to breathe and figure out why this is happening. It's takes a lot of effort to advocate for your own health, and for the health of others you love…especially when the very symptoms you're are experiencing are weighing you down. 

    I'm also on the Qvar 80 mcg dose. Are you doing 2 puffs twice a day?  I found that to be very helpful to reduce my inflammation and help me manage my asthma symptoms. I hope that it helps you too and that you are soon finding relief! 

    I'm also in grad school part time and one of the resources that is available to me for free is counseling services. Does your grad school offer that resource to you too? This might be an affordable (or FREE!!) way to obtain some support from a professional who can help you manage your anxiety.  

    Remember, you have the right to find answers and to feel better!!  I hope you find both very soon! 

    Brenda

  • Melissa G

    IA-TXFisherman, I am so very sorry you are having such a rough time.  Happy to hear that your wife is so supportive!

    Have you read this blog post: 

  • IA-TXFisherman
    Brenda Silvia-Torma posted:

    Hi @IA-TXFisherman, I'm so glad that your wife has been supportive and that you found the AAFA community–we're here for you and understand. It doesn't matter how few symptoms a person has, or how many…it's still a struggle to breathe and figure out why this is happening. It's takes a lot of effort to advocate for your own health, and for the health of others you love…especially when the very symptoms you're are experiencing are weighing you down. 

    I'm also on the Qvar 80 mcg dose. Are you doing 2 puffs twice a day?  I found that to be very helpful to reduce my inflammation and help me manage my asthma symptoms. I hope that it helps you too and that you are soon finding relief! 

    I'm also in grad school part time and one of the resources that is available to me for free is counseling services. Does your grad school offer that resource to you too? This might be an affordable (or FREE!!) way to obtain some support from a professional who can help you manage your anxiety.  

    Remember, you have the right to find answers and to feel better!!  I hope you find both very soon! 

    Brenda

    Hi Brenda,

    Thanks for the reply. I'm taking the Qvar two puffs a day along with the Symbicort and the Spiriva respimat. I'm encouraged to hear it's helped you. I just started it a few days ago, so it's new to me. It's the Redihaler variety. There are so many different kinds of inhalers and how to work them I've found out. I'm of course also taking my allergy medications. I think this recent flare had a lot to do with the weather getting cooler and changing suddenly. Many people here are struggling with it.

    I see a counselor there as well as one outside of college, I've had anxiety and depression issues for a while now. It's helped. I was doing well for quite a while with everything, I think I've just worn myself out trying to all these different things. I think it's best to hold back until things are better managed.

  • K8sMom2002

    Good for you seeing a counselor both at the school and outside of the college! I'm hoping they can help you figure out how to reduce your anxiety and your depression. It's very natural to feel anxious and depressed when you're not feeling well and when you are hoping for improvement soon! Add college studies to that, and it can get overwhelming very quickly. 

    And we ARE here for you, and you are NOT complaining! You are speaking your truth. It's your reality, and really only folks who are handling chronic disorders can understand that. I'm so glad you have your wife's support — family support is so important. I can't imagine what my life would be like without my DH and my DD's support.

    What are some things that help you reduce your stress level?

    And sending good that the insurance will come through without a hitch!

  • Shea

    I just had a visit woth my allergist and although I liked the flovent, he switched me to advair because it lasts longer and he is hoping it will help keep my hesrtrate down just using advair as opposed to combivent and flovent that I use now (I have high heart rate because I take prednisone and all the breathing meds and had a heart attack in the past)… So far the advair does seem to last longer as far as me not needing a midday dose BUT I have bern avoiding triggers lately too so we shall see. 

  • Melissa G

    I really hope the advair works well for you Shea! We noticed a huge difference when Bekah went from Flovent to Advair. 

  • Brenda Silvia-Torma
    IA-TXFisherman posted:

    Hi Brenda,

    Thanks for the reply. I'm taking the Qvar two puffs a day along with the Symbicort and the Spiriva respimat. I'm encouraged to hear it's helped you. I just started it a few days ago, so it's new to me. It's the Redihaler variety. There are so many different kinds of inhalers and how to work them I've found out. I'm of course also taking my allergy medications. I think this recent flare had a lot to do with the weather getting cooler and changing suddenly. Many people here are struggling with it.

    I see a counselor there as well as one outside of college, I've had anxiety and depression issues for a while now. It's helped. I was doing well for quite a while with everything, I think I've just worn myself out trying to all these different things. I think it's best to hold back until things are better managed.

    You're most welcome!! The Qvar has definitely helped me–my doc recently lowered my dose to 1 puff twice a day, so that was good news that I was excited to receive!  

    It's wonderful that you are seeing a counselor to get support and that it's helped. Life can be overwhelming for anyone at times…adding a chronic illness into the mix can definitely exacerbate those feelings of stress and exhaustion.

    For me, it was especially overwhelming at the beginning of June, when I didn't understand why I had trouble breathing. I hadn't had bronchitis is a long time, and when I last had it, I don't recall having as much difficulty breathing. I'm so grateful that I wasn't taking a class over the summer, b/c I don't know if/how I could have managed it all.

    How many classes are you taking this semester?  And, can you take a semester off in January, or take fewer classes? Yes, that sets your expected graduation date back, but it might give you enough time to recover so that you can take a class in the summer and catch up (if you weren't already planning to do so).

    I'm hoping that the Qvar starts to kick in soon and that you are feeling more like your old self again!

    Brenda

  • Brenda Silvia-Torma

    Hi @IA-TXFisherman, How have your symptoms been over the past few weeks? Despite the cooler air, I'm still having to wear my mask most days (those particles are just not going away!) I don't mind though, b/c it's definitely helping me to breathe. 

    Yesterday, I wore it when I was leaving work and a gentleman asked me where he can buy one. Sometimes I feel like a walking advertisement and should get a commission for Vog mask but mostly I feel good that people are asking–usually they ask for a loved one, so it's great that they are looking out for them.

    I think I'm starting to make it "in fashion" around here! (lol).

    Hope you're doing well! Happy Thanksgiving!

    Brenda

  • Melissa G
    Brenda Silvia-Torma posted:

    Yesterday, I wore it when I was leaving work and a gentleman asked me where he can buy one. Sometimes I feel like a walking advertisement and should get a commission for Vog mask but mostly I feel good that people are asking–usually they ask for a loved one, so it's great that they are looking out for them.

    I love it! And a walking educational resource!