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AERD and hives
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An_243869 posted:
I'm new to the asthma community but not to the disease. I have AERD with allergies and over the past 25 years have been through the shots, the worsening asthma, the doctor saying was psychosomatic , the 80% occluded sinuses, two polypectomies and aspirin desensitization. In other words I've been through it all.

Aspirin desensitization worked great for me at first. More energy, fewer infections, my sense of smell came back. I could travel and exercise. But then I started getting hives every night at a round 7 p.m 12 hours after I take the aspirin and other maintenance medications. This as been getting worse for the past two years. Now I wake up with hives and my face swollen, and get hives, and itchy lips almost every night.

I'm worried that I might have to stop taking the aspirin but then what? I'm also trying to find any information on what to expect as far as the progression of this condition as I get older.
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sgbl88 responded:
Welcome to the community.

I also have AERD and take aspirin daily. It sounds like you need a better doctor unless you have changed from the one who said it was psychosomatic. GOOD GRIEF!!! I had a GI say that I was coughing to get attention (fired him on the spot), but my asthma dr and GP are fantastic.

I do have hives occasionally, but not often. My face itches terribly on high pollen count days, mainly trees. I usually will take an extra benadryl on those days.

The worst hives I had were on my legs. My doctor and I decided that maybe it was the fabric softener my family uses when I am not around. She told me to run the washer with just water to rinse away any residue before washing my clothes with my sensitive skin products. Maybe your hives are being caused by the fabric softener in your sheets. Do you shower before going to bed? If not, the pollen that has collected in your hair and pillow maybe triggering the hives.

Do not even consider stopping the aspirin! Your asthma will be horrible without it. Think back to the months before your desensitization. Do want your life to be like that again? Aspirin sensitivity can also cause chronic hives. There is a web site about chronic uticaria that has a low salicylate diet which discusses this issue. Talk to your doctor about it. Maybe increasing your aspirin dose back up to twice a day (aslways taken with food) will help with the hives. Aspirin sensitivity can also cause ulcerative cholitis.

I wouldn't blame the hives on taking the aspirin, but would suspect another cause or too low a dose of aspirin.

For me personally, I would much rather deal with itchy hives than asthma that totally controlled my life. I had no energy to care for my family, couldn't go to church, couldn't stand to be in stores, was sick almost constantly.... Hives would be a minor nuisance to me in comparison to the impossible asthma. Also, while the hives are uncomfortable and unsightly, the asthma is life threatening. I would chose being able to breathe.

It is my understanding the with aspirin therapy AERD will not progress. I did a lot of research on it before my desensitization. It all indicated the the disease was totally controlled by aspirin therapy.

I hope that helps some. Let me know if you have other questions. I would love to talk with your more about it.

God bless,
Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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Fullest replied to sgbl88's response:
Hello Sonya i too have AERD aka Samters triad.Im 23 and i had 2 surgeries till now for nasal polyps.I still dont wanna do desensitization cos im afraid to be honest.My asthma was good until the begining of this year...now its terrible.IM on Seretide 500,also taking my inhaler(ventolin) rly often.My pulmonologist want me to start Singulair,and i guess i dont have a choise.Only thing that helps is prednosine.Now 5 mounths from second operation i still have smell,i use Nasonex.I do daily irigation and yoga,as much as my asthma alows it.I really cant belive this striked me,cos i was very healty individual who do sports whole life,lived with non-smoker family and was eating good.I just cant belive that i need to deal with this to the rest of my life?Is there some natural cure?Does low-sals food helps?How to control my asthma?Only trought medications or there is some other way?And how are you feeling now?Thank you and god bless you.
Best Regards
 
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sgbl88 replied to Fullest's response:
Hi Fullest,

I HIGHLY recommend the desensitization. Other forms of aspirin sensitivity can be controlled by diet to some degree, however the respiratory form cannot be. After it starts it is self perpetuating and frequently leads to pred dependent asthma. To my knowledge, there is no way to control asthma triggered by this disease except desensitization.

As you know, pred is terribly for you. Aspirin desensitization will greatly reduce your use of pred and all other medications you are on.

Aspirin is derived from willow bark, so it is a natural substance.

My desensitization was 17 months ago. I really feel great. It was the best descission I made. After my allergist explained some of the disease process to me and I started researching, I knew I HAD to have the treatment. The last year and a half before desensitization I was on pred about every 4 weeks and getting more frequent. I spent about two full months on pred and then another burst in the four months immediately preceding the procedure.

Before treatment I had been looking for a job. I stopped looking just prior to treatment because I was so sick so often that I couldn't expect to keep a job for very long. A job offer litterally fell into my lap 3 weeks after treatment when I had decided I should start looking for a job again (a friend who knew I had been looking for a job bumped into a mutual acquaintance whose husband was looking for someone with my skills). I have not missed a full day of work being sick. I did have mycoplasma pneumonia in July, but got over it MUCH more quickly than I had in the past with no pred, and just a few breathing treatments. I only missed about a half day through the whole illness.

My experience is that going through the desensitization will greatly reduce your symptoms, need for medication, severity and length of infections, and greatly improve quality of life over all.

The research I did made the procedure sound much worse than it was (at least for me). My GP goes to the same church as I do, and he scared people describing the procedure. It really isn't that bad. I was able to stay on medications as I had already been diagnosed. I think that helped.

Make sure that you have a well qualified doctor over seeing the procedure. My doctor did it in her office (well equipped for emergencies), but you can request to do it in a hospital if that makes you feel better. I felt better with my allergist's staff caring for me since we already had a great relationship.

I hope that helps some. It sounds like you really need the procedure. Let me know if you have any other questions or concerns. I will be glad to answer them. I will be praying for you.

God bless,
Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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Soytr replied to sgbl88's response:
As an update - by process of elimination I figured out what was causing the hives. I was taking a fish oil omega 3 supplement. When I stopped taking that they went away. I tried several different brands and types of fish oils (krill, salmon etc) and each time the hives came back.
 
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Soytr replied to sgbl88's response:
Sonya - its nice to to feel like the only oddball whos been through this. Many people even doctors haven't heard about it. I always feel funny giving a medical history saying I'm allergic to aspirin and oh by the way I'm on aspirin therapy. Alsways good for a few minutes of explanation.

I do find that the aspirin desensitization doesn't mean I'm cured but I am definately lots better. I still need lots of other medications but at least now I only have one or two sinus infections a year and almost never need to take prednisone. YEAH!. Its been 12 years since my last surgery and 2.5 years since I did the desensitization.
 
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sgbl88 replied to Soytr's response:
It is wonderful to hear from someone else who has gone through the desensitization!!!

HEHE... I was having knee pain and was referred to and orthopedic surgeon. It was so fun explaining the NSAID allergy is really a disease that has been treated and now I have to take aspirin every day. Then surgery prep! Nurse "You can't take aspirin for a week before surgery." Me, "I can't NOT take aspirin for one day." Nurse, "You have to go off the aspirin for surgery." Me, "I can't do that or I will have severe asthma. I will have my allergist send you the documentation and surgery prep protocol."

I am also still on a ton of meds, but I have been on pred once in the last year as opposed to 12 time the year before desensitization. Once I was on it for a solid two months.

More doctors really do need to be more awere of this disease and know that it can be treated since 20% of all asthmatics have it. I think about all of the patients who could be spared the long term side effects of frequent pred use. It really is sad that more patients do not have this diagnosed and treated.

God bless and please stay in touch.

Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]


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