Asthma just wont go away

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mellyb218
New Member


Date Joined Feb 2006
Total Posts : 7
   Posted 9/27/2006 7:35 AM (GMT -6)   
Hello, I am a 17 year old from N.Y who was diagnosed with Churgg strauss Syndrome In June of 05

Since june of 2005 i have been wheening off of prednisone...the highest I've been on is 80 mgs.
But asthma is a counterpart of Churgg strauss syndrome....and not to mention I've had ashtma sicne i was Little.
Prednisone had controlled My asthma since the summer of 05 but I CANT be on it forever....the side effects are just too much
So Everytime I get down to a small dose--for the most part it's usually 15mgs.-- My asthma kicks back in full-force...and Im forced to go back up on prednisone. This cycle doesnt seem to end and i feel as if I will NEver be off of prednisone....Im so eager to gett off though because of my newfound insecurites ever since i started the medication. In 2005 i weighed in at 95lbs and now I'm at 135lbs
and i KNOW that for my age that's a healthy weight...but my body has completely changed and what bugs me the most is that i feel healthy but still look sick-- iTS Just too much water weight and i simply want to be off prednisone.
Plus everything that happened since june of 2005 has been Totally Uncontrolable
O AND DID I MENTION I'm a TEENAGER...so this is 10x harder

Well enough jibber-jabber....now to the point. I've Come to a conclusion that the real problem here is my Asthma. I believe that If i cure it or kEEP it down to a minimum I can surely wheen off of prednisone easier and once I am off it I can pass go and collect $200 ( yeah ) So does anyone here have any Ideas for controling my ashtma....natural cures would be helpful as well...or even stories on how You possibly put your asthma into remission would be gladly appreciated.
I have attempted advair....seems to not work for me.
Currently I am on : Prednisone 22.5mgs a day
Cellcept (an immune suppressor) 1500mgs in the morning/1000mgs in the night
Asmanex Inhaler 220 mcg (to i guess prevent the ashtma) 2 Puffs twice a day
Foradil (Bronchial Dialator) 2 inhales twice a day
Bactrum Double Stength 3x a week

Thanks for any Help, advice, and replys
-Melissa :-)

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23353
   Posted 9/27/2006 7:54 AM (GMT -6)   
Hi Melissa! I don't have much advice for you but have you ran your doubts thru your doc and see what he/she says about controlling your asthma. I agree that being on pred for long term use is not a wise thing. It can lead to many complications down the line such as bone loss. I know you may of heard, but please be sure that while you on any steroids to have your eyes checked on a yearly basis as well to take a calcium supplement. Steroids weakens the eyesight and can cause complications. I am on steroids as well (but for a different health reason) and have to have my eyes checked on a yearly basis. I can relate to self body image while being on a drug that makes you feel like you look horrible, but honestly I can't relate to that while being a teenager! I can only imagine. Peruse the forum and read the posts by other asthma sufferers and see if what they take might be of help to you. Also, I recommend you read the forum resource section and see if you might find ideas there as well. I'm so sorry you have to deal with this in addition to another illness but hang in there.
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Uc(Left-sided) since 1992 - Meds - Colazal, Hydrocortisone enemas, Norvasc, Biotin, Forvia...flaring since December 2005
Secondary Raynauds Syndrome since 2004...Fibromyalgia since 2006
Co-mod for Ulcerative Colitis.....Moderator for Allergies/Asthma
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Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9602
   Posted 9/27/2006 5:22 PM (GMT -6)   
So very sorry you have asthma.
Since you've been on prednisone for such a long time it's very important you ask your doctor that you'd like to start to taper off it. You must not quit the prednisone cold turkey. then ask for maybe some nebulizer treatments(Xopenex) as you taper off the prednisone.
Hate to say it but there really is no cure for asthma you'll just have to figure out how to keep it controlled.
As a teenager that can be even harder because emotions effect asthma too and you'll have to work hard at staying calm while you taper off the prednisone.
Do you see an Asthma /Allergy doctor or just a PCP(primary care Physician) ?
Wishing you the best of luck and keep us informed on the progress!!!
Hope this has helped and yea Asthma sucks yeah

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9602
   Posted 9/27/2006 7:56 PM (GMT -6)   
Hi Mellyb218,
I forgot to mention while your taking prednisone you need to reduce your salt intake on or in foods. That is because it adds to the weight gain. Advair did not work for me either, it made my asthma act up.
Ask your doctor about the nebulizer treatments specifically Zopenex, could'nt hurt. We don't mind the jibber-jabber here.
Are you on Singulair, it's a tablet for asthma?
Wish I could help you out more, Take care yeah

csguy
New Member


Date Joined Nov 2006
Total Posts : 1
   Posted 11/6/2006 9:22 PM (GMT -6)   
Hi Melissa,
I am 41 and have had Churg-Strauss since I was 24. It was only officially diagnosed 2 yrs ago. It started w/ really bad asthma and sinus polyps. To make a long story short, I ended up in Johns Hopkins Hospital in Jan 2004 where it was fianlly diagnosed. I did the chemo lite thing for about 6 months (cytoxan), but it did not do much. The thing that works best is low dose pred. I was on 5mg/day and advair. I have just lowereed the pred to 2.5mg/day and so far so good. Like you the bad CSS symptoms are under control or in remission and it is the asthma that I have to deal with. I am working king w/ a dr now to lower the pred as much as possible and trying a non steroidal treatment to supplement. I may try xolair or try a luekotriene blocker (singulair) to assist w/ the asthma while maintaining some sort of low dose steroid. This must be done under the care of a Dr who knows what they are doing, because while trying to lower the pred too much can cause the CSS to flare. It is a very delicate balance. It seems you are on a lot of meds and I think it would be to your benefit to see one of the nations top CSS specialist at Johns Hopkins (their vasculitis center) or Dr Wechsler at Brigham and Womens in Boston. Most Dr's don't really have a grasp of the nuances involved w/ CSS. Whatever other info I can provide, let me know.
Greg

css
New Member


Date Joined Feb 2009
Total Posts : 1
   Posted 2/5/2009 2:42 PM (GMT -6)   
my question is to gregg who has considered xolair tx
i also have considered this for my asthma and css Dx
i have tapered off the prednisone to 5mg qd
to avoid the water retention i have used natural diuretic in my diet
such as celery grapefruit, cucumbers apple cider vinegar and no salt or sugars

Aurora60
Veteran Member


Date Joined Jul 2006
Total Posts : 1249
   Posted 2/5/2009 3:02 PM (GMT -6)   

Melissa, I have very bad asthma.  It can not be cured but it can be controlled and mine is now very much undercontrol.  I don't know what kind of dr. you are seeing but you need to see a pulmonologist which is a lung specialist.  I've had asthma since I was a child. But it was very mild for many years. Then it got worse as I got older.  This summer my asthma went comletely out of control.  I saw the pulmonologist, had many lung function tests (which are very easy, just breathing into various devices) and he determined I was on the wrong meds.  I only occasionally was on prednisone when symptoms were bad. The dr. put me on a long term inhaler called symbicort and I have albuterol for a rescue inhaler.  I have been breathing freely ever since I went on the symbicort and have only had to use my albuterol a few times when I over exerted myself.  Yes, you should wean off prednisone. It is not a med to stay on for so long as if weakens your immune system among other things and you will be subject to other infections.  If your dr. feels your asthma is severe you might be prescribed a portable nebulizer.  But this is really not the answer.  I have had nebulizer treatments but only at the dr's office.  It is a temporary fix.  You need some type of long term inhaler that will put you symptoms under control and then you can get off the prednisone for good.  The best advice I can give is go see a lung specialist.  This is the best way to determine what treatment plan you should have.  Post again and let us know how you are doing.  I wish you the best, good luck.

Aurora


Iggy
Regular Member


Date Joined Feb 2009
Total Posts : 27
   Posted 2/8/2009 5:18 PM (GMT -6)   
I developed asthma in 1995 shortly after moving from Florida to Arkansas at the age of 55. I controlled it with prednisone for several years. My sister, who was 1 1/2 years younger had suffered from severe asthma for decades. about 3 years ago my asthma got really bad. I was having to use a steroid inhaler every hour. In desperation I emailed a cyber-friend in England who is an acupuncturist, and asked if she thought acupuncture might help. She replied that she had great success in treating asthma.

Despite my skepticism, I arranged an appointment with a local acupuncturist. Within a couple of hours of treatment I felt better and was able to cut my medication in 1/2. After my next treatment I was able to stop all medication. After 1 1/2 years of biweekly treatment, I felt cured and stopped further acupuncture treatments. At my urging, my sister tried acupuncture but it didn't help her. She had been on steroids so long that her body was totally defendant on them. My sister died last year during a severe attack.

There is another promising treatment for asthma. Helminthic Therapy, the intentional infestation of parasitic worms. It's a revolting thought but usually not harmful, and if there is a bad reaction, it can quickly and easily be reversed.
Helminthic therapy is being researched at the University of Iowa and the University of Nottingham. Treatment is available in Tiajuana by an American company, owned by Jasper Lawrence, who cured his own severe asthma with helminthic therapy.

http://www.medicalnewstoday.com/articles/82632.php

http://en.wikipedia.org/wiki/Helminthic_therapy

http://www.youtube.com/watch?v=qlHzLSRKfBI

http://www.nytimes.com/2008/07/01/health/research/01prof.html

http://autoimmunetherapies.com/helminthictherapystories.html

Post Edited (Iggy) : 2/8/2009 3:21:27 PM (GMT-7)

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