caught in a crash

asgusbar · 01-19-2004, 01:49 AM

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I am new to the site and oh so glad I have found you. My name is Amy and I have had severe persistent asthma since I was in 6th grade. I am now 33 years old and have actually enjoyed a 10 year respite from severe symptoms up until this past October. Since October, I am back to being in and out of the ER and just plain almost immune to all of the meds. I am on Advair 500/50, Prevacid 30 mg, proventil , zyrtec, theophylline 200 mg twice a day, an epipen for allergic reactions, nasarel nasel spray, albuterol treatments and of course the dreaded prednisone. I have gone through 4 cycles now where I am up to 80 mg and then off for a few days and then another URI hits and back up I go. I have a really good pulmonologist and allergist immunologist working with me. The only med there is left for me is the IgE therapy. My nice insurance company wants to wait to see how expensive it will be to keep me on the current treatment before they will cover it. {Of course those paper pushers arent the ones that are gasping for air every night.} I am just having a morale problem really! I am forgetting how to keep on trucking! My kids are cranky and my husband is getting frustrated doing the shopping and my docs are busy passing out meds.....what I really want to hear is my doc say, "It's time to draw that first IgE level. Yipee!

Amy in Ohio

PinkBanana · 01-19-2004, 02:53 AM

Quote:

Originally Posted by asgusbar

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I am new to the site and oh so glad I have found you. My name is Amy and I have had severe persistent asthma since I was in 6th grade. I am now 33 years old and have actually enjoyed a 10 year respite from severe symptoms up until this past October. Since October, I am back to being in and out of the ER and just plain almost immune to all of the meds. I am on Advair 500/50, Prevacid 30 mg, proventil , zyrtec, theophylline 200 mg twice a day, an epipen for allergic reactions, nasarel nasel spray, albuterol treatments and of course the dreaded prednisone. I have gone through 4 cycles now where I am up to 80 mg and then off for a few days and then another URI hits and back up I go. I have a really good pulmonologist and allergist immunologist working with me. The only med there is left for me is the IgE therapy. My nice insurance company wants to wait to see how expensive it will be to keep me on the current treatment before they will cover it. {Of course those paper pushers arent the ones that are gasping for air every night.} I am just having a morale problem really! I am forgetting how to keep on trucking! My kids are cranky and my husband is getting frustrated doing the shopping and my docs are busy passing out meds.....what I really want to hear is my doc say, "It's time to draw that first IgE level. Yipee!

Amy in Ohio

Xolair(IgE therapy) is not considered a quick fix for asthma, and it should not. You shouldn't expect to see significant results for at least a month, if not several. And they still don't know if this comes close to curing asthma, it just decreases the amount of hospital visits and medication needed.
Not to mention the recent studies that are showing the connection between Xolair and cancer. There is very little, if any, knowledge about the long term effects of this treatment..so I'd be a little leary about it, in my opinion. You may end up later in more trouble than it was worth.
Have you been tested for your allergies? Gotten immunotherapy? I've heard great things also about accupuncture for asthma/allergies..just another route you could try.

asgusbar · 01-19-2004, 04:28 AM

Quote:

Originally Posted by PinkBanana

Xolair(IgE therapy) is not considered a quick fix for asthma, and it should not. You shouldn't expect to see significant results for at least a month, if not several. And they still don't know if this comes close to curing asthma, it just decreases the amount of hospital visits and medication needed.
Not to mention the recent studies that are showing the connection between Xolair and cancer. There is very little, if any, knowledge about the long term effects of this treatment..so I'd be a little leary about it, in my opinion. You may end up later in more trouble than it was worth.
Have you been tested for your allergies? Gotten immunotherapy? I've heard great things also about accupuncture for asthma/allergies..just another route you could try.

Yes...I have already done the allergy immunology treatments as I mentioned before. After 5 years of shot therapy, I had 3 anaphylactic reactions to the therapy and had to be intubated. I know for sure that Xolair doesnt cure asthma, but none of the meds are working for me anymore. If it decreases the amount of hospital visits and meds, thats just what I need. I also have to deal with the dangers of being on prednisone for 4 months now. It giving me high blood sugar and effecting my kidneys. I am not in a good boat either way.

hc85 · 01-19-2004, 02:44 PM

Xolair works if you are an allergic asthmatic because it takes away a lot of the allergy component and causes you to be less symptomatic. I can understand where you're coming from because I've been on prednisone for a year now. It's definitely not a fun medication. My bone density is low average, but is gratefully still avereage. I don't have much of an allergic component since I moved and I'm still severe so a lot of my asthma is intrinsic, so Xolair won't help me with that. My doctors and I are trying IVIG infusion for six months to see if that helps. IVIG is intravenous immunoglobulin and they've seen that it makes people more sensitive to the prednisone. They're not looking for it to raise my lung function, but hopefully it will help us to be able to reduce and maybe even cut my prednisone. If that doesn't work, we'll then retest my IgE and see about Xolair. If my IgE isn't so high then they'll look at cyclosporin which is a drug that is given to transplant patients that is an anti-immune drug that will totally wipe out my immune system. Or they may look at methotrexate, which is a chemo agent. Having severe asthma is definitely not fun.

jp3892 · 02-09-2004, 09:51 AM

Hi Amy! U listed all the medications u are on but I am just wondering: were u on all those medications even during your ten year respite? If not all, which medications WERE u on? Im not too sure but it seems like u may have grown out of a childhood asthma and by continuing ALL those medications at a high dose may have done more harm than good and even may have over-sensitised your airways. So far I believe this only happens when taking a 'short-acting bronchodilator' regularly, instead of prn.