Azmacort Substitute (Page 9)

Azmacort has been taken off the market because of environmental concerns (they say). There really is NO substitute. All other steroids do not work. My wife could die because of it. No one seems to care. Do you?

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All:

My beloved June died today with my tears on her cheeks.

Jack

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Dear Jack,
I am so sorry for your terrible loss of June. You both were so lucky and blessed to have so much love between you and now she is perfect in heaven, no more suffering. God Bless you Jack. I will personally work on the problem of Azmacort being ripped from us with no substitute offered - of the same medicine in a different form.
Linda

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Dear Administrator:
When Abbott decided to take Azmacort away from asthma sufferers who had grown dependent on it, they did a terrible diservice to us all. They should have put the medicine in a different propellant. This was done with Albuterol and maybe others too. Jack's wife June was stable on Azmacort and her condition worsened when she had to try different preventative inhalers. Her health spiraled down, like a domino effect, until she passed away. How many June's are out there that we do not know about? I suffered greatly when I stopped Azmacort, even though I knew for several months that it was being discontinued. It was with great fear & trepidation, I tried 2 and then had very bad side effects. Now I have one that I think may work, but I am not sure. It is risky to play with asthma preventatives - when something is working and you have confidence in it, why can't it just be made available with a different propellant that is HFA like the rescue inhalers have?
Thank you
Linda Hanley

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I too was on asmacort for 18 years. the pulmicort flexinhaler tore up my lungs. the asmanex was a little better but still tore up my trachea and main bronchi. the doctor put me on the pulmicort respules and it is making my upper chest tight for 10 hours at a time now. I take the treatments every 12 hours. He has no other solutions for me. Qvar is the last resort and the likely hood of a bronchospasm is great since I have had one to a similar propellant. I need help.

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To Revolving the Sun:
When you tried the Pulmicort Flexhaler - was it 90mcg or 180mcg? Are you seeing a Pulmonologist? is your asthma triggered by allergies? Have you ever called Jewish National in Denver - just to discuss your situation? sorry to ask so many questions- just trying to get a handle on things with you -I want to help- I know how it feels when things go south with asthma. I was on Azmacort 15 years.-it is the only preventative I ever used.
Linda

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Dear Jack,

You have our most sincere condolences. May your strong faith, family, and friends come through for you now more than ever. It is so unfortunate to have to wonder "What If" Azmacort was not taken off the market. You are in our thoughts...

Sincerely,

The medschat Staff

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Dear Jack,
I am so sorry to hear about June. May she fly with the angels. I hope the powers that be are listening to us. I was on Azmacort for over 20 years and it worked so well for me. Now I'm on Qvar and still hacking and coughing. Luckily I had not had a major asthma attack that will send me to the hospital. I have tried two different types of inhalers, both about killed me. I have been seen by an asthma doctor who just gave me a couple of tests and told me to go without the Azmacort and only fill the inhaler if I needed it. He gave me samples. I tried them and neither one worked and in fact made me worse. How many more people have to die before someone hears us? God bless and keep you Jack in your time of sorrow. Our prayers our with you.

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Linda, Ask all the questions you want. I am soo desparate. I was on the 180 pulmicort flex. when i first took it, it bothered my throat and then my trachea and my main bronchi. i stayed on it for 2 1/2 months trying to get use to it. you know, give it a chance. it really messed me up. my pulmonologist wants to put me on advair. why? i was fine on the asmacort. why do i now suddenly need a long term bronchidialotor which is also in a powder? it seems my family doc is the only one willing to work with me. she is super but we are running out of options.
i dont know about the denver place. i guess i will google tomorrow and try to contact on monday. i dont know what they may be able to say or do from so far away. i live in the eastern time zone. thanks for caring. it has been so rough. hearing about June tonight just kind of sent me over the edge.

Jack, I am sooo sorry about June.

J

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All:

I truly appreciate your messages. They convey to me that I am not alone and that others care and are affected by a single loss in this mass of humanity about us.

We are, after all, a huge family started by one man and one woman. There is no room for prejudice or hatred. We are all affected by the same challenge they faced or, more specifically, Adam faced. We either believe God or the other spirit being.

And, that, by the way, is the limit of our free will; to believe John 3:16 or to be bugged by Ephesians 6;12: which says, For our struggle is not against flesh and blood, but against the rulers, against the powers, against the world forces of this darkness, against the spiritual forces of wickedness in the heavenly places

That verse tells us other people are not the problem; it is the spirit beings that lead them by the nose.

No one, I repeat - no one goes through this life on their own. Some day I will figure out how God has worked it out so that we THINK we are the captain of our souls. I am sure it is in Scripture, I need to do some study.

I am writing a paper now that may deal with it when I get to it. It is on how Man functions. He is not composed of Body, Soul and Spirit; Man FUNCTIONS in or through his Body, Soul and Spirit. The Tripartite or Bipartite argument is a waste of time and good theological talent.

To sum it up for you - the Soul is the basic You. The way to You is through the body gate or the spirit gate. It is up to you to decide which gate you want to get the information by which you wish to use up your life doing. There are severe consequences if you choose wrongly. You may have a dead spirit, but you can still read, hear and reason with your body and soul. You are without excuse.

Jack

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Jack-thank you for sharing your thoughts-I agree. I think we are all one - one conscienceness. The soul is the main event and our frail bodies are just temporary.Miracles are everywhere. Sending prayers to you.
Linda

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Revolving the sun:
I called Jewish National when I first got this terrible scary asthma. They have a nurse line and they talked to me many times for long periods of time- to educate me and help me deal. Your family dr may be great, but I hope you can get to Pulmonologist to fine-tune your care. My specialist said it is better to be on the 90mcg than the 180mcg-less is better of this particular medicine. I strongly disagree with that medicine that has 2- preventative& bronchodilator in it - similar to Serevent that I think Advair is. I had bad reaction to that-and think you should take one med- not the combo med. Are you in Mass? I am in Mass. We have poor air quality here, so there is alot of environmental issues to deal with-stay away from molds and dust too. I am just brainstorming here - please go to Pulmonologist. If you are in West Mass I can recommend oneIf you are in Eastern Mass-I would go to Brigham in Boston.

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Hi Linda,

I am in Dayton OH. We are in the top 10 cities for allergies.

Why did the dr say 90 mcs was better than 180mg? is it because itis the most irritating stuff on earth to lungs?

I will call the jewish hospital. i googled them and saw they do alot with asthma. wish I was closer, I would go and let them test me.

i see my fam dr tommorrow. she may be brave enough to try the qvar or wait to see if the pulm neb does any better. i seem to have not gotten any better in regaurds to my upper chest getting tight after the treatment. i am on the .5 dose (highest). maybe i need the .25 so it is not as irritating.

i just dont think my pulm doc knows what else to do. i did have another pulm doc when i was younger. i may contact him.

my brain is always searching for answers!! its getting very tired.
J

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Hi Revolving the Sun (and everyone)
In Dayton, go to big teaching hospital - that what we do here-we go to Boston. See pulmonologist that is up on latest. Call Jewish National -just to talk to Lung Line nurse to run everything past her and make a plan. They are the top in the country for lung problems. I almost went there, but didn't. My pulm. dr. says that less is better with the Pulmicort and to take the 90mcg not the 180mcg. Thats what he told me anyway. I am thinking that your body needs a little help with anti-inflammatory response, but with steroids it best to have lower dose one. That is the one I am on and I am doing good (knock on wood) The Flovent made me get severe sore throat, hurt to take deep breathe, headache. Took it for almost 3 weeks, then switched and all the bad stuff disappeared. If you can do the saline spray in your nose to keep it cleaned out of allergens. Drink alot of water and hot tea and hot coffee. Sounds simplistic but works for me. When you have alot of coughing, if you are well hydrated body is cleaning out the lungs. I worked at Pulmologist for a year several years ago, then tried to learn on my own as much as possible, I got everything down, then Azmacort discontinued- then I had to re-look at things that help or hurt me. Now I need support for degenerative disc disease in my cervical spine- just found this out and I am depressed about it. Talk later
Linda

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has anyone had neck muscle pain side effects with Asmanex, Advair,Proventil. I've been having an awful time with it. Also, trying to obtain Azmacort from any drug companies is useless - they list the drug but don't have it. I have tried every company including Bermuda and Mexico - it doesn't exist anymore! I also called Abbotts 800 # - the are just phone messengers - no help there. They did give me an address and I have written to complain about the discontinuation of Azmacort - probably won't do any good.
In the meantime I suffer and wonder if I'll ever have a life again. I've had to cancel a foot surgery twice because my asthma wasn't under control. I've tried 14 different inhalers - can't tolerate any. Today I go to the pulmanologist.

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hi Filly
Yes I have had bad neck pain on my new inhaler- but had X-ray and its degenerative disc disease- getting MRI tonight and Phys.Therapy this afternoon. Pain is so bad it over-rides any other problems. Thank God asthma is calm right now. Pulmicort Flexhaler 90mcg is working for me. Its good you are going to specialist for your asthma. Good luck & let us know what preventative you end up on next.
Linda

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All:

I went to the pulmonary specialist yesterday who was useless. If you can't tolerate the drugs, too bad! That's the attitude they have. No help there what so ever. Someone on this site mentioned the salt pipe - I see it listed everywhere on-line - there are 2 different versions - the ceramic one looks very heavy to hold for 15 minutes. If anyone has used this with success please let me know which one you tried. Thanks

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Filly, I totally understand about the pulmonologist. The allergy and asthma doc did the same thing to me. I am basically on my own now trying to find something that works.

Did you try the med neb version of pulmicort? I am on the .5. It brought my peak flow from 450 up to 500 and sometimes better. But it makes my throat sore and my trachea tight. I am going to try several different things to help remedy this. I add normal saline (small amount) to help dilute. I am also going to try using 2 - .5's instead of one .5. Hoping that the extra fluid helps to calm down the irritation. The medicine no longer makes my lungs feels numb like it did at first. And I finally have more energy. I am only on 10mg of pred now. People say I look better so I must have looked pretty bad.

I use to think this would be a simple process but I am well beyond that now. This is going to take some time to get stabilized again.

I would like to know more about the saline pipe too.

Hello to all.

J

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Hello everyone,

We just sent an email out to those of you who previously responded to us about a pertinent press release.

If you have been an active part of this thread until now and would like access to a confidential copy of the draft (prior to the press release going live on June 29th), please reach us via the Contact Form.

Jack - I hope you received my email. Your wife's story was mentioned in the draft, and I hope that is okay with you. My main question for you at this point is whether you have or are considering setting up a fund in June's name following her loss? At the very least I'd like to put a link up or more information on here if such a thing exists.

Sincerely,

Nick Jabbour
Community Founder

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I am now using Q Var and it seems to be working okay. I don't think it's quite as good as Azmacort...but at least it doesn't make me hallucinate, like Advair and those other dual action inhalers. Thank God! I tried Triamcinolone in a nebulizer and that didn't work very well. I also notice I have intestinal upset/diarhea off and on...mostly on, since I started the Triamcinolone neb and also Q Var after that. Been going on 2 weeks now...may be a long time virus, don't know. Anyone have problems like this with Q Var? Also...in a couple of days I will get my helminthic therapy. It may be 4 months before I know if that works. I will let you know. Look it up. Helminthic Therapy...also Autoimmune Therapy. It's possible I could breathe normally again with no drugs!

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Dear All:
Dear Nick Jabbour :

Thank you for your continued concern for those who have breathing problems.

I have not thought about a setting up a fund in June's name, mostly because I have no idea how to do that nor do I have a clue as to how to manage such a thing. If such a thing would prove to be helpful to others, I do not object.

I do not object to anything done in my wife's name as long as it is honorable.

My grief is such that I am able to function fairly well outwardly for a while but at any time and any where I am blindsided with a tsunami of tears I cannot hold back.

Although I know a little about giving advice and help to those who are going through the grief process themselves, this one is one me and takes a personal tone. I am trying to understand it such that I can offer better help in the future.

One thing I have learned: if someone offers help, don't try to go it alone. Let them. It is a catharsis for the giver and the receiver. Let others in your world. Besides, it is Biblical (2 Corinthians 1:3-5).

Jack

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