Azmacort Substitute (Page 9) (Top voted first)

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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Revolvingthesun

What happens when you have theophylline toxicity. I have my blood work done tomorrow.

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Linda,
What about a chiropractor? I get instant relief with those guys. They put the bone back where it should be.

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My biggest thing was my heart rate. It was 130-150 sustained. Heart palpiations. Jittery. And even though my level was high, I could not breathe. It was miserable. But back then drugs were limited. I grew up with severe asthma in the late 60's and 70's. Back when asthma was not recognized. I spent a lot of time in hospital oxygen tents. When I wasnt in those I was at home in mist tents. My fond memories are of my mom rocking me in the middle of the night because I could not breathe. Now without the asthmacort it is like I stepped back into that black world.

I dont know if they still make it or not but there is another pill called proventil tablets. At my worst I was on 300 theophylline every 6 hours and 4mg proventil tablets every 6 hours plus inhalers. i am on beta blockers now and i dont know if i can take the theophylle at the same time. i am going to have to hit the med books again.

each person responded to theophylnne different . you will have a level that works for you. it may be higher or lower than the norm. so just because your level comes back okay, if you cant breathe, tell them.

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Revolvingthesun

Thanks for the information. I'm only taking 300 ER theophylline once a day, so hopefully my levels with stay normal since my breathing is doing well. I'l have to check with my doctor on how often to have my levels checked

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attention Lakshmi
yes chiro is good, but I am going to Physical Therapy because insurance pays for it. I can't wait to go because the PT that I am seeing solved the problem in December. I asked doctor for referral and had to wait a week to get in so tomorrow at 1pm I will be there. I hope everyone is doing good. I didn't know they still prescribed Theophylline - I thought that was replaced by more modern drugs. Dr. today wanted to give me a Medrol pack (Prednisone) for the pain & inflammation, but decided to wait. I don't like going on that drug, although it does work well. Hope you are all doing well and that Jack & June are doing ok too. God Bless
Linda

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Hi-I wrote a long post last night but it got stopped by editor- probably I talked about money too much & too detailed. I was trying to say how happy I am that maker of Pulmicort will give it to me free after I meet out-of -pocket. Thats all - nothing bad. My asthma is good (knock on wood) and now just dealing with degenerative something in C5 in my neck causing pinched nerve. PT was yesterday and it was great, can't wait to go back today at 2:30. I hope everyone is doing good and that Jack&June are OK
God Bless
Linda

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How do we know if something we are saying is a no-no by the editor? Also speaking of the editor, has anything been sent by them to the make of Azmacort regarding all of our complaints, feelings, etc.?

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Well once Jack's post was held up, and my post from last night must have been a no-no. Yes- we should figure out how to do something like you just said Carol.

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Hi Linda, Carol & all -

To answer your questions which came up about posts being approved, etc... We have certain filters in place which will trigger a post to become "Pending" - when this happens you will see a message along the lines of "Your post has been saved but needs additional review before appearing on the site." We are then notified to go and review the post in question. Linda, for some reason we did not receive a notification of a pending reply from you, nor did we find one being held up in our system. Did you see the standard confirmation when trying to save the message? It appears to have been lost in limbo and we apologize for any inconvenience.

As to us working towards increasing awareness of this CFC inhaler predicament, please know that we have not forgotten about you. It is not always an easy task to penetrate an organization as large as Abbott, especially since our community is not a large publicly traded company.

They have an 800 # posted on the (former) Azmacort web site. It is 1-800-633-9110. We encourage everyone to call them and voice their frustrations. More calls can only help. In the mean time, it is also our intention to complete a press release draft to at least start getting the message out there. We read every post that comes through on this thread and feel like we have a very good idea of how we can approach this. Please know that this is something which we are taking our time with, because the press release can only be as effective as the message conveyed. Anybody is always welcome to Contact Us if you have additional thoughts to share of what information would be most relevant for such a press release.

Hopefully public awareness will be raised as a result of this thread and any subsequent messages sent and we can be one step closer to a truly suitable replacement.

Best wishes to all.

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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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