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Old 05-09-2005, 03:44 PM   #1
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Join Date: May 2005
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J.B. HB User
Brittle asthma

Hi,
i am very new to message boards but need some help and advice from anyone whom has brittle asthma. I have just been diagnosed with it after a year of having very uncontrolled asthma. i am struggling with getting the correct medication to help as every thing seems to not be working again.. i have been in hospitail so many times and take many oral and inhalued medication. This is starting to get me down and i have lost my job also due to the time i have had of sick. I do not know anyone else who has brittle asthma. and it would be great to speak to people who have it also. I have been on steriods for such a long time for metanace but have been put on 60mg and this is effecting my moods. Also it has been mentioned me having sub cut infusions to try and stablise me. is any one out their have this type of treatment?

 
Old 05-10-2005, 12:14 PM   #2
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Join Date: Nov 2003
Location: Indiana
Posts: 513
jerrie97 HB User
Re: Brittle asthma

Quote:
Originally Posted by J.B.
Hi,
i am very new to message boards but need some help and advice from anyone whom has brittle asthma. I have just been diagnosed with it after a year of having very uncontrolled asthma. i am struggling with getting the correct medication to help as every thing seems to not be working again.. i have been in hospitail so many times and take many oral and inhalued medication. This is starting to get me down and i have lost my job also due to the time i have had of sick. I do not know anyone else who has brittle asthma. and it would be great to speak to people who have it also. I have been on steriods for such a long time for metanace but have been put on 60mg and this is effecting my moods. Also it has been mentioned me having sub cut infusions to try and stablise me. is any one out their have this type of treatment?
Hi,
I'm not sure if my asthma would be called "brittle asthma" because my doctor said it was a term that they usually use in the UK (I'm from the US), they call it "severe persistent" here.
What medications do you take? Like you, I'm also on high doses of prednisone and it makes me very moody also, as well as making my face like a balloon. Other than that, I take Advair 500/50, QVar 80, Allegra, Singulair, Xolair injections, Xopenex/albuterol, Nasonex, Nexium, and Spiriva. All that and I still end up in the hospital pretty frequently.
I've never been on subcutaneous infusions, but I think there is someone on this board who does get them (Bluebanana - you still around?).
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Old 05-16-2005, 12:13 PM   #3
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Join Date: May 2005
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HP-FAN HB User
Re: Brittle asthma

hello
i have asthma that got worse when i was nine, 8yrsago, i have brittle asthma type 2 and am on a s/c infusion, i have had my pump for three years. At first i had a trail which didnot work well then they changed the drug and i got better i still have attacks. i have pred at 40mg but am reducing it at the moment. jb they will find something to help you it took a while fot the right treatment but they will get there with you. s/c works for some but not all but if you are worried speak to people and get advice from other means, but the best place for advice is your doc or asthma nurse. if you have s/c you will be supported well and if may be great for you.
(bluebanana i think they were mean!!! you didnot post instructions for websites just for someone to get advice whilst they are struggling to come to terms with having brittle asthma. hope you are well, what medication do you take hope you dont mind me asking, and what pred level have you reduced from? also can i ask you if you had any effects from it) hetty x

 
Old 06-03-2005, 05:21 PM   #4
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J.B. HB User
Re: Brittle asthma

Thank you for replying. I have been in hospital from the 17th of May, after a nasty attack and itu adventure!! Have been but on s/c infusion that at first during the trail I didnít respond too well. I have started to after a bit. Has been improving me a bit I still am wheezing a lot and having low pfs and needing my neb but my pfs donít seem to drop as much through out the day as they used to. I was told part of the trail for s/cut was a dummy drug.
Blue banana in response to what I can remember what you asked, I am under my local respiratory department and have been great, I see a visiting consultant from Birmingham once every 6 weeks aswell and it was via them I started my infusions.

There is just question I would like to ask those on sub cut. Is there a nicer needle And also I have been getting very sore and lumpy sites!! .I am using butterflies and although I have no concerns in placing the needles I am finding them very uncomfortable. Also sorry to asked more questions will pred start to be reduced soon or will I have to remain on it longer I am on 40mg and struggling with the depression more then I was.
Thank for the time in answering my silly questions, I struggle to ask them and forget stuff to much as things do not seem to stay in my memory bank for long at the moment. especially during appointment times.
Thank you all JB

 
Old 06-15-2005, 05:24 PM   #5
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J.B. HB User
Re: Brittle asthma

hetty you said you were on sub cut how did it go for you? i have just come of it the improvement is not as good as it was. my consultant from birmingham said to discontinue it and may be try a different drug next time should he have let me stay on it longer i really have tried to understand this but the explanation from the cons is rubbish and they leave me more confused when i have left. i am finding it hard and my pf is not coming above 200 and dropping, also still requring many nebs. i am struggling with looking after my sons and feel very low about life in genral i cannot be a mum to them, play with them like i did and on top of my own health my baby has croup and iS not to well. sorry if this sounds like i am feeling very sorry for my self but i just want to have this asthma under controll and live my life again.

J.B.

 
Old 06-26-2005, 10:57 PM   #6
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Join Date: Apr 2005
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Karen W. HB User
Re: Brittle asthma

Quote:
Originally Posted by J.B.
Hi,
i am very new to message boards but need some help and advice from anyone whom has brittle asthma. I have just been diagnosed with it after a year of having very uncontrolled asthma. i am struggling with getting the correct medication to help as every thing seems to not be working again.. i have been in hospitail so many times and take many oral and inhalued medication. This is starting to get me down and i have lost my job also due to the time i have had of sick. I do not know anyone else who has brittle asthma. and it would be great to speak to people who have it also. I have been on steriods for such a long time for metanace but have been put on 60mg and this is effecting my moods. Also it has been mentioned me having sub cut infusions to try and stablise me. is any one out their have this type of treatment?
Hi,
My son who is now 21 has been in your shoe's. He still has severe asthma attack's that come out of no where and when they hit, they are severe. Let's go back about 5 year's, My son's asthma was so bad, at one point he was on 11 meds a day. These doctor's kept adding medication but he was not getting any better. I had said to them, you keep adding all of these meds but there's no improvement-lets get him off some of this stuff, He was also taking predison daily for about a year and a half. Well from taking the predisone daily for so long, his adrenial glands shut done and he ended up getting secondary addison's disease. His adrenial glands shut down because your adrenial gland produce's a natural steriod for your body, when you take a steriod for a long time, your adrenial gland get lazy and shut down, they don't have to produce any thing because your taking it in a pill form. Needless to say, my son had gotten very ill for about 2 years, For school he had to get home and hospital tutoring because he was to ill to go to school. We had three Doctor's( Asthma Doc, Adrenial Specialist and his regular Doc.) and they all had a different view on what to do-(To Many cook's in the kitchen), finially I had to stick with one Doctor that I felt was doing his the best and dump the other too. Once I did that we started to focus on what meds he really needed and dumped the rest. It took 5 years to ween him off the steriods but we are now totally off predison and his adrenial glads are now working. He only use's a neublizer machine and an inhailer daily, when his allergies act up, he take's Zeratec. So what I'm getting at is-Be carefull, Get more than one Doctor's opionion, Your health could improve in the long run. I wish I would have know about what predison can do to you when you have to take it for a long period of time, I would have never aloud it to happen.
Karen

Last edited by Karen W.; 06-26-2005 at 11:00 PM.

 
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