I'm 30 w/ severe asthma - I take Advair500/50mcg , Zyflo600mg, Zrytec 10mg, Sprivia, Prednisone20mg, Albuterol/Atrovent (DuoNeb) every 2-3 hours, Allergy Shots (weekly) Ativan 1mg and I am waiting on my first injection of Xolair. In the last 2yrs, I have been in ICU & CCU for extended periods. I also have tracheal stenosis b/c of having a trachae when I was 2; this does NOT help my asthma. If the Xolair shot does not work, my asthma and pulmo doctors both say I will have to continue on Prednisone for the rest of my life. I DO NOT like what the steroids do to my body, but the only way to have my airways open is to be on Prednisone. In the last 2 months, I have had pneumonia twice with hospitalization, 3 rounds of antibotic, mass doses of Prednisone; and now I am on Oxygen Therapy at home, I have to wear it at all times. Right now I pretty much home bound, even with the oxygen, I have bouts with shortness of breathe and coughing. The doctors say I am on the strongest asthma medications, and they still can't get it completely under control. My last option is the Xolair Injection, and I was worried about it b/c of the high cost, but my insurance is willing to cover it. My asthma and pulmo doctors said, they couldn't promise me that this would completely work; but I am hopeful. Any advice or information any one can give me would be greatly appreciated. Do any one know any other medicine that I could try? I have been on Singulair 10mg, but they switched it to Zyflo 600mg twicw daily. I am open to any suggestions!!
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Severe Asthmatic
- By amandag5991
- Posted December 11, 2007 at 11:53 pm · 15 replies
- In Allergies and asthma
- Shared with the public
Explore topics in this discussion:
Asthma Cancer Zyflo Allergies Ativan Pneumonia Singulair Pain DuoNeb Prednisone Acupuncture Stress
15 replies
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- Newest first
- By Jaleyn
- Posted December 13, 2007 at 9:03 am
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Hi I am sorry you are having so much trouble... I have had asthma since I was a child (5) I am now 54. Have you determined what you are allergic to??? I am somewhat surprised you are still getting allergy shots with such bad asthma. I am not able to get them any more my lungs are too bad... Is it possible for you to avoid the things you are allergic to??? Many things in our environment can cause trouble. Do you have pets what about carpeting??? Our home has hard wood floors carpet holds lots of dust.... Do you have gas heat can you cover the heat vents with cheese clothe??? One thing I have trouble with is the soap section at the grocery store. Can someone else shop for you??? I have learned lots of tricks in all my years.. I wish you well please write back when you can... take care J
- By cabcat
- Posted December 14, 2007 at 8:30 am
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WOW Have I heard that story before Yes Its my story all except the singulair I took accolate xs a day and they put me on zyflo Let me tell you if your insurance will pay for the zolair LET THEM DO IT I can not get my injections because no one around here will give them to me due to medicare and medicaid Something about the cost and no one willing to defure or how ever its spelled the cost and give me my injections I was taught how to do my own and was doing so and doing so much better but then the end of the year came and now I cant get it through my insurance But while I was on it I wasnt in the hospital every other week or day or month Shortness of breath wasnt too bad either Now lets talk prednisone Yes you need to take it the way my asthma and pulm doctor put it is DO YOU WANT TO BREATHE OR NOT? I am not a big fan of steroids either I have gained 20 30 lbs I never use to weigh more than 110 My joints ached from them sometimes making it so that I cant walk Like my primary doctor said its like adding fuel to the fire It also raises my blood suger levels up to where I need to take meds for it Do what your doctors say and dont be afraid to ask questions But remember they know more than we know about this I hope you have doctors like mine who take the time and effort to listen and help you out Stres is a factor in out condition so please try not to stress and by the way I am jealous you get to get your zolair You will see a big difference in a few weeks Let me know how that is working out for you and may you do well Good luck Ill be thinking about you
- By gomar
- Posted December 15, 2007 at 4:19 pm
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Hi, I am so sorry to hear about your serious asthma. Many people have had really good luck with xolair. I have, but I still have set backs, but overall much better. If it works for you take that time to get your allergies under control... ie - get up to full dose on allergy shots, and deal with any environmental allergies in your house (dust, molds, pets). Even if you just take care of your sleeping area it may help some since we spend one third of our lives in bed! Forget asethics completely in decorating! My room is totally stripped down... no window treatments, no carpet (wood floors), clutter and I have covered matteress and pillows, frequent hot water bedding washings. It is cleaned thouroughly by someone other than myself once every other week. Change air filters on your house if you have them every couple of months. I would find a second doctor who maybe approaches allergies and asthma differently, but don't give up on mainstream approach. Maybe acupuncture, chinese herbs and nutrition could supplement their approach. The traditional docs may scoff at it, but it's your body and you owe it to yourself to do everything you can to treat your disease and have respite at least every so often from the prednisone. Be sure you are getting a good calcium, magnesium and vitamen D supplement and doing something like lifting weights as your health allows to keep your bones as healthy as possible. As you probably know by now, the prednisone can do havoc on bones, and other parts of the body. Hope this helps! good luck and I'll say my prayers for you!
- By bethmac228
- Posted February 11, 2008 at 8:15 pm
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YOu sound so much like me four years ago before I started receiving Xolair injections. I spent at least two admissions a month and multiple ER/ambulance visits. I had to have lifeline so I could get help immediately if I couldn't call 911. I even had private nursing at one time. I am still on O2 at home and 24/7. I would really like to get rid of it but my pulmonologist said it is not likely so I am leaving it in GOD's hands. I hope this offers some comfort and please send me a message if I can help.
- By peanutbggrl
- Posted February 12, 2008 at 7:38 am
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i have cronnic asthma my self so servere taht i get infections all the time and allergies to everything sust mold pollen chemical and sometimes their is hidden chemical that will trigger your allergies and asthma and is ver hard to control sometimes or depend on where you live how much pollution thier is here whre i live it's damp which keeps the dust down but what about the fumes from vehicle maybe you can't notice it but your lungs now it affects my lungs and peop;e perfumes or colongs andi can't breathe and my lungs alwaysget infected always and get over one you got another one and almost died i kept getting chest pain headaches and tiggleing and umbness and blacking out and dizzy made it to the emergency jsut in time my doctore said one more day i would of died that happened five time part of it cause my doctor thought i had a cold and kept sending me home but tow days later inthe emergency it wasn't no cold don't guess take exrays just to be on the safe side thier is different things that you might not lknowtaht istriggering your asthmas and allergies attacks trying looking around your place if you have carpet get rid of it it'steh worse, pets , pillows buy brand new one put plastic covering overthem and you bed. wash jackets cause you picket up other oders from every where cooking oil is another sneaking one you might ot notice it right aways but as time goes by your lungs will sense it and react to it ever cars that have a sent laundry detergent get none perfume and evern ormal soaps o rhair spray or make up, you can't always smell it but your lungs can even through your skin and we all pick up oders taht we might no be aware of i wasn't at first but ow i can tell what set off my allergies andmy asthamwhich is pretty mucheveryhting even beingina smokers vehicle will setit off cause it's sensitive to anything now i would try to keep agernal of what you eat where you goes time and date so you can try control it it's ot easy andtake along timeto findout but you will and steam in the shower let the shower run and breathe inthe steamit'll losen the mucus in your lungs or a humidifier will help put moisture in the cold air and hot airwill effect you also even food they have lots of chemicals in them that we all have to be aware fof and read the lable more often sounds like alot of work but it will help you with your asthma and try to steam clean with out using carpet cleaners bakcing soda and one purfume landry soap or dish soap work good but effectiely and less harmful to you wear a mask when cleaning and try not to breath in the order or cooking oil some let off a strongsmell and get into your lung and you can't breath stay warm but have moisture inthe air drink lots of water also it'll get your mouth moisten andflush out harmful sustance fromyour body that will help you also i have to do it all the time now and watch whre i go and can't be around lots of people cause their purfume and colonge would kill me your probabley really senceitive to politcal inthe air or chemicals try to steam the athroomsit their for10- 15 minutes to it'll help lossenthe mucus thats building up cause of your asthma it's works i do it and it'll help you feel a little better sometime eating differently too will help try different healthly food that you like but not alot of chemical fresh vergtable and low fat diet too and excersiese will also help a little at a time as much as you can handle only you know how much you can bear hope you do get better ad find out what works for you let me know how it goes and findout anything else that might work i would love to hear any thing too
- By cabcat
- Posted February 13, 2008 at 5:18 am
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I too am onl the medicines that you take and was on zolair until my insurances quit paying unless someone in town would be able to take the med there and then inject me with it from their office But I was giviing myself my own shots at home for about 1 1/2 yrs until the insurance comps dropped me but YES IT HELPPED ME TOTALLY You have to take it for a few weeks before you notice the big difference BUT IT IS WORTH IT I am now on the predisone everyday just like you are and i hate what if has done to me and my body havenever been overweight but I feel like a blimp my joints are screwed up and I now spend most of my time in ICU CCU The pulmo doctor is wonderful with me and treats me so good and works very hard to keep me well as well as my primary doctor They are wonderful I too went off accolate 20mgs 2xa daily for zyflo but my insurance wouldnt pay for it So I am back on accolate as usual Please do as your doctors say and give them a chance to help you Talk to them and let them know your concerns They are not only your live savers they are very learned in their field I wish you well Keep your head up and think positive I look forward to hearing how this works out for you
- By Jaleyn
- Posted February 13, 2008 at 10:01 am
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Hi I was wondering how you are doing??? This has been a bad winter so cold and snowy.... I don't take prednisone all the time but I have taken it at various times. I know how you feel I don't like to take it. I had a bone density test done to make sure my bones have not suffered. I hope you are doing better take care and please let us know... J
- By cbDayton
- Posted February 14, 2008 at 10:43 am
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One contributor to the problem of recurrent pneumonia is prednisone.
Prednisone can affect DHEA hormone release from the adrenal gland.
DHEA is involved in immune system modulation.
DHEA peaks between age 26 to 29 so your DHEA level should be the highest it will be in your life.
But, it is highly likely that your DHEA level is close to zero due to the necessity of taking prednisone.
I (as a primary care general internist) suggest you ask your doctor to order a DHEA-S level (that is the sulfated derivative of DHEA). If it is indeed very low then discuss with your doctor the option of taking supplemental DHEA. I AM NOT suggesting you stop the prednisone. In patients of mine I have found that the DHEA supplementation in situations like this can significantly decrease the risk of recurrent pneumonias. It is possible that DHEA could also complement the anti-leukotriene therapy you are currently taking (Zyflo).
Another supplement to consider is pycnogenol. This is a pine bark extract. Fairly expensive. But, shown in one randomized control trial to significantly improve asthma symptoms in children who are on steroids. Again, am not advising you stop the steroids. The pycnogenol has been shown in patients your age to significantly increase maximum oxygen consumption, meaning more efficient use of oxygen to make energy. So, I advise talking to your physician about the option of taking pycnogenol ~100 mg twice a day.
I have no financial interests in the above. Please do not take this advice and do it on your own. Check with your doctor first. S/he could be aware of reasons not to follow this advice.
- By bethmac228
- Posted February 17, 2008 at 7:25 am
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Regarding xolair. My primary care and pulmonologist refused to get it because of the cost but I got my ENT doctor to get it for me and now they had about 20 patients on it. Don't give up and ask other doctors if they will help.
- By sjdavis1945
- Posted March 1, 2008 at 5:01 am
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I have had asthma since I was three, I am 62 now. I have passed out from it, I used my inhaler every 5 min. I even slept with it in my hand. I have had the allergy test . Took the injections twice and had reactions both times and had to come off of them . I was on prednisone every day for 15 years, Made hospital visits two or more times a month, sometimes twice in one day, I would leave work go to the hospital for a treatment and return to work just to go back again after work, I have been on so many different types of meds . but the best I ever had was Metrotrexate I probably did not spell it right, it is a cancer drug , I was on it and I did not even have to use my inhaler or anything it was the best I had ever felt for about three months ,but the side affects are scarring of the lungs ,and possible liver damage , you have to have pulmanary function and liver test once a month. I think my Dr took me off because of the risk I can't remember it has been years. But I had to quit work . I have asthma everyday but not as bad since I don't work. I live across the street from the hosp. and I still am affraid I won't get there in time , I have been fine one minute and be on mt way to the hosp. the next. I wish you luck .
- By naturalnurse23
- Posted March 16, 2008 at 10:01 pm
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I am not an asthma sufferer, but came across this website. I know if I were you I would be open to trying something different than what you have been doing. Conventional medicine doesn't always have all the answers. They successfully "treat" symptoms. Suppressing symptoms is not finding an fixing root cause. Asthma is an autoimmune dysfunction. Your body is overreacting in your lungs for some reason. What is the reason? Environmental allergens? Why is your immune system out of sorts? If you can be a detective and figure this out, you can cure yourself of this illness once and for all!
What is the bast way to get to a destination? Follow the path of someone already there!
Hope this helps:
http://www.asthmadefeated.com/
Peace, Love, and Light.
- By healthee22
- Posted March 24, 2008 at 9:03 pm
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Hi sorry to hear what your going through. This device brought to the US has had great results with asthmatic. Kangen water is endorsed by 10,000 doctors in japan as well as doctors in the Us. its also endorsed by the Japanese ministry (FDA equivalent) and Dr. Hiromi Shinya inventor of the colonoscopy. Many asthmatics who've drank this water are off medicine or not in dire need of their inhalers like before. They are breathing much better! If you'd like check out www.aquamiracles.com or contact me dweckgirl@gmail.com and i can give you all the info.
Good luck
- By Babykins
- Posted June 4, 2008 at 9:02 pm
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Hi Jalene, I am new to this site and have just read over your discussion and the 12 responses that are posted. Iti is truly an awakening for me as to the suffering all of you are experiencing. I, myself have struggled with allergies most of my life and have had bouts with asthma. My daughter and granddaughter have struggles closer to your own but not as sever. My heart goes out to you as I remember one time when Kennedy was 3 she was hospitalized for 3 days with breathing tubes and medications. It was a very scary experience, when camping and because of the campfires we had to rush her to the hospital once again so she could breathe. She was 8 then and i remember her asking me as I held her "Am I going to die, Grammie?" That just broke my heart but I knew I had to be strong for her.
Anyway, too have struggled but have been able to stay off the medications for the most part. I have concentrated on building my immune system, I rotate my diet every 3 days (if I have corn on Monday I do not have it again until Thursday), and I take vitamins, walk, and lift weights. I also see a chiropractor every month and more if I need to. It was a slow process but one that has seemed to work for me, and I recognize all of us are different; however I do believe as one person spoke that our bodies are created to heal themselves. They do need the right enviornment in which to accomplish that though. Medications are synthetics that can often destroy our natural ability to heal so even though they give you immediate relief they do not cure or heal and only weaken your bodies natural defenses.
Again, I am no medical doctor and I am not promoting that you stop your medications; however I am suggesting you do some reading on how to strengthen your natural healing and take small steps towards that end. There are tons of websites and books on the subject such as by Kevin Trudeau "Natural Cures" and there is also a website naturalcures.com
Best of luck to you.
Babykins
- By Jaleyn
- Posted June 5, 2008 at 10:32 am
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Thank you for kind concern for me, I do appreciate it. We are at present drowning in Iowa and I am not kidding we got over 5 inches of rain last night. I will be staying home in an attempt to breath. I do have the book you recommended and I have in the past gone to the chiropractor. I am very careful about my diet I don't eat processed foods.... I am one of those "old fashioned from scratch kind of cooks. I am very very fortunate my husband is a big help with the things I can not do. Dusting and vaccuming. We have been married for a long time(32yrs) and he is very good to me.
My kids we have 5 now have all done well. The oldest and the youngest have had bouts with asthma but they have gotten better. I am told that women get worse as we get older and boys are more likely to grow out of it... thanks again for writing ... take care J
- By Rufftime
- Posted August 6, 2008 at 12:06 pm
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My son has severe asthma/allergies. We put him on a quality probiotic called Primal Defense, he has been almost totally fine. Also we have done things like local bee pollen if the asthma is allergy triggered. We haven't even resorted to the heavy artillery yet(herbs). For more severe cases, herbs will absolutely work. If a doctor can only give you something you have to buy for the rest of your life....I would not except that. I want the problem fixed!! Herbs such as lobelia and mullein, asthmatics swear by. At http://www.BulkHerbStore.com they have a section called "Need A Remedy" that links you to the herbs that relate to you problem...such as asthma.
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