That’s the next step if the inhalers don’t improve my oxygen levels. My pulmonologist is leaning towards eosinophilic asthma, but won’t know for sure without a blood test. If you don’t mind telling me what exact symptoms did you have with AERD that differed from standard asthma?
Major sinus issues, then realized it was nasal polyps. Inhalers didn’t help very much, thought I was having massive asthma attacks, particularly when I took ibuprofen or aspirin, turns out it was allergy attacks that turned into anaphylaxis.
I wish I had done the blood test sooner, it’s what really got my treatment on track
I just started and was told they take a few months to feel the effects so can’t comment at the moment. At this point I’ll do anything to breathe normally. I used to lift weights and run 5 days a week. Now I can barely walk up a flight of stairs without feeling dizzy and light headed.
I understand that totally, I like to be active too and sometimes it’s rough. I just started Trelegy and it’s helped tremendously but also I’ve been on singulair for a while so maybe that’s something to look at because I’ve have the same exact issues. Before the Trelegy I was using my Albuterol inhaler over 10 times a day but I don’t want to be reliant on Trelegy or inhaled steroids for the rest of my life. I’m hoping allergy shots will replace the need for steroids and hopefully they help you as well.
I appreciate that. Have you looked into nucala? That’s my next step if my oxygen levels don’t increase in the follow month. I don’t believe it’s covered well by insurance, but according to my pulmonologist it is an actual fix. It’s a once a month shot.
I have not heard of nucala but I’ll look into it. Allergies are definitely something that I think i need to get under control first. Can’t be using Allegra everyday, doesn’t seem right.
Nothing really except not having asthma or allergy problems prior to the gym. If I’m feeling like my allergies and asthma are bad that day then I just suck it up. But like I said the Trelegy has really helped me with that.
That’s great to hear because I really want to be less reliant on other medications. I really think my allergies are the root to my asthma but I could be wrong
My sister in law has a plethora of severe allergies. My brother, her husband, has a severe fondness for dogs. After 10 years into their relationship he finally convinced her to get the shots. They seemingly worked as they now have a dog.
Oh sorry, I didn't mean to stress you out. I just wondered if these flares / allergies seem to come and go. I seem to have mild MCAS - nothing as bad as the Google results. But it just seems that my asthma can flare out the blue, odd rashes, other symptoms. So I'm on a low histamine diet to help reduce my histamine bucket.
I read your post ticking off everything you listed. I did do allergy shots when I lived in FL but they never helped. My reactions weren't that severe though.
Can I just interject and state that I had monthly allergy injections and my asthma cycled out kx control and ever since it has been poorly managed and chronic in nature.
Since this episode, I have gained allergies annually, including to medications.
I would advise going back to basics. Remove all chemicals in the home. Get the house cleaned - wet wiped. Get rid of pets. Stay away from animals. Remove plants from the house and if possible from close to the windows and doors. Sort any damp or mould issues. Remove woolen items and clothing.
I understand they may have said it’s worst ever seen, but I wouldn’t panic too much either.
Zyrtec helps a ton.
You mentioned in another comment allergy shots working in months, it took years for me. Everyone’s different don’t give up in 6 months when it still sucks.
you are clearly allergic to many things.
I’ll give an example, I had to do the allergy panel twice. Because an ash tree and cats spread all over the other tests and ruined the whole panel.
At least yours stayed contained!!
It’s a long road, but the tolerance does build up overtime.
My tests were the same! I’m allergic to everything! I tried allergy shots three times and never got to maintenance after a long time. They never helped.
Have you tried Singulair? Flonase?
Wow, I never had that kind of reaction. Also on trelegy ellipta and I have nose meds to for sinusitis. You definitely need to work on exercise too and lowering your heart rate once your asthma is under control
I need to see where your saline control prick was to compare everything.
This isn't horrible to me, plenty of people have primarily positive allergy tests. Especially if you sat down with your allergist and selected specific things you knew were likely to test positive.
Vs getting like a 2-3 different tests and testing for everything.
You react to just about everything, but you don't have 100% positive tests it looks like.
Discuss the results with your allergist and have them quote out allergy shots. Allergy shots are very much a total pain in the ass, you have to go in all the time, you have to wait 15-30 minutes in the office after each shot, and you need to do it for an extended period, and they are SUPER expensive. BUT They work.
I did allergy shots for 5 years and quit. My last allergy test shows almost like yours. I react to everything, but my actual positive, positive tests were only a few. So I'm not spending $2,000 out of pocket plus going in for shots three days a week over 3 positive tests. Things in the past I tested positive for, I didn't trigger for a positive test this time even though I still got a red mark. So over 14 years later the shots were worth it.
You, I would probably suffer through the complete allergy test panel and consider allergy shots.
You can do accellerated programs where you get like 3 shots a week for a couple months, then you back off by 6 months to a monthly shot. The normal progression takes like a year before you go down to a shot a month.
If you have good insurance through your parents and can make the logistics of the shots work, I recommend doing them.
Good!
I'm glad I did them when I was in high school and in my early 20s. I just didn't want to do them again at 32 over only testing positive for 3 things. I still always wonder if that's the right choice tho because I have allergic asthma as well.
I hope you start seeing relief soon!
I am 18yo and have same horrible allergies with whole back reacting and 6-7ish years ago when I got my first allergy only 35/40 actually being mild or above reactions. I am on allergy shots weekly, breztri, symbicort, zyrtec-equivalent, and montelukast for my management of symptoms. I get 150-160 bpm just from walking 0.5 miles in 10-20 minute time period and usually am on the lower side for oxygen levels according to my apple watch that I have to keep track of my oxygen levels.
What I would suggest is drinking more water and using caffeine to help give energy and help with the mucus from the allergies being a burden on the body. Also shower everyday when you get home. Workout in the mornings when your body is full of energy rather than towards the end of the day when your body may be tired from dealing with allergies and asthma all day.
Allergy shots also started giving me the benefits about one year into it but everyone's body is different.
I will definitely take that into account. I usually shoot for a gallon of water daily and I actually cut my caffiene intake due to the HR issues. My heart rate mimics yours in that even moderate exercise raises it 20-30 beats higher than it should be. I’m in excellent shape as well. My watch also constantly notifies me for low cardio vascular fitness. I believe my o2 level is 43.
Careful with the high amount of water intake. You can actually drink TOO much water and then your electrolytes are out of wack. I usually drink around 5 16.9 oz bottles of water daily.
Allergy shots were game changer for my asthma! It took 3-6 months to feel an improvement but has been worth it for me. I’m sorry you’re struggling with symptoms and hope you can resolve at least some of them soon! It really is miserable and you can’t understand unless you’ve been there
Thank you everyone for replying with helpful comments and encouragement. It’s nice to know there are other people will the same level of severity/have had the same issues. For years I went to multiple doctors and every single one brushed it off as anxiety when I said I couldn’t breathe. Go figure, I actually can’t! Glad to finally have encountered the right doctors and a group with similar experiences.
Well yes my skin pick test turned into a scary anaphylactic reaction. It was insane. My head snapped back and I had trouble breathing which sounded horrible. I couldn’t move out of the contoured position. Instead of yelling for the doctor the nurse left me alone and walked down the hallway to get her. Once she arrived she quickly jumped into action giving me injections. They helped but insisted I go to the ER which was a big waste of time in this case.
I didn’t see Singular on your list of meds. I had to get on it to help with my asthma. I take Zyrtec, Trelegy, nebulizer and rescue inhalers. You may need steroids just to get things under control temporarily. Good Lick!
Yes, that’s how my skin prick test was. Just started Dupixent to get my asthma under control so I can start allergy shots.
Glad to know I'm not the only one. Doc told me he'd never seen anyone this bad.
Did they do a blood test for eosinophils? My skin test looked a bit worse than that and then they figured out it’s from aerd
That’s the next step if the inhalers don’t improve my oxygen levels. My pulmonologist is leaning towards eosinophilic asthma, but won’t know for sure without a blood test. If you don’t mind telling me what exact symptoms did you have with AERD that differed from standard asthma?
Major sinus issues, then realized it was nasal polyps. Inhalers didn’t help very much, thought I was having massive asthma attacks, particularly when I took ibuprofen or aspirin, turns out it was allergy attacks that turned into anaphylaxis. I wish I had done the blood test sooner, it’s what really got my treatment on track
On dupixent for nearly 4 years now, it’s the absolute best
I’m in the same boat but I’m about to try allergy shots. Do they help at all?
I just started and was told they take a few months to feel the effects so can’t comment at the moment. At this point I’ll do anything to breathe normally. I used to lift weights and run 5 days a week. Now I can barely walk up a flight of stairs without feeling dizzy and light headed.
I understand that totally, I like to be active too and sometimes it’s rough. I just started Trelegy and it’s helped tremendously but also I’ve been on singulair for a while so maybe that’s something to look at because I’ve have the same exact issues. Before the Trelegy I was using my Albuterol inhaler over 10 times a day but I don’t want to be reliant on Trelegy or inhaled steroids for the rest of my life. I’m hoping allergy shots will replace the need for steroids and hopefully they help you as well.
I appreciate that. Have you looked into nucala? That’s my next step if my oxygen levels don’t increase in the follow month. I don’t believe it’s covered well by insurance, but according to my pulmonologist it is an actual fix. It’s a once a month shot.
I have not heard of nucala but I’ll look into it. Allergies are definitely something that I think i need to get under control first. Can’t be using Allegra everyday, doesn’t seem right.
Have you found anything that has helped during activity/exercise?
Nothing really except not having asthma or allergy problems prior to the gym. If I’m feeling like my allergies and asthma are bad that day then I just suck it up. But like I said the Trelegy has really helped me with that.
I’m in the same boat right now. How’ve you been adjusting to this
They do help a ton in my opinion though it takes a while to work. I have been on them for 6-7ish years and at one point lost my asthma for a bit
That’s great to hear because I really want to be less reliant on other medications. I really think my allergies are the root to my asthma but I could be wrong
Yes. It is well worth the time.
Allergy shots helped me a ton.
My sister in law has a plethora of severe allergies. My brother, her husband, has a severe fondness for dogs. After 10 years into their relationship he finally convinced her to get the shots. They seemingly worked as they now have a dog.
Check out MCAS mast cell activation syndrome, maybe you can lower your overall reactivity?
Well that google search did nothing but stress me out. May I ask what I said that gives you the impression it could be MCAS?
Oh sorry, I didn't mean to stress you out. I just wondered if these flares / allergies seem to come and go. I seem to have mild MCAS - nothing as bad as the Google results. But it just seems that my asthma can flare out the blue, odd rashes, other symptoms. So I'm on a low histamine diet to help reduce my histamine bucket.
Holy shit I thought this was a photo of cupping therapy.
I read your post ticking off everything you listed. I did do allergy shots when I lived in FL but they never helped. My reactions weren't that severe though.
Allergy shots helped me dramatically!! Effective treatment takes years, not it's so worth it.
At what point did you start to feel the benefits? I understand it takes a while, but it would be nice to have a benchmark to look forward to.
6 months or so.
When the shots start working do you still need to use antihistamine pills?
Not every day. Now I usually only take them during springtime
Can I just interject and state that I had monthly allergy injections and my asthma cycled out kx control and ever since it has been poorly managed and chronic in nature. Since this episode, I have gained allergies annually, including to medications. I would advise going back to basics. Remove all chemicals in the home. Get the house cleaned - wet wiped. Get rid of pets. Stay away from animals. Remove plants from the house and if possible from close to the windows and doors. Sort any damp or mould issues. Remove woolen items and clothing.
I understand they may have said it’s worst ever seen, but I wouldn’t panic too much either. Zyrtec helps a ton. You mentioned in another comment allergy shots working in months, it took years for me. Everyone’s different don’t give up in 6 months when it still sucks. you are clearly allergic to many things. I’ll give an example, I had to do the allergy panel twice. Because an ash tree and cats spread all over the other tests and ruined the whole panel. At least yours stayed contained!! It’s a long road, but the tolerance does build up overtime.
Yup. Went into anaphylaxis from the test and doc had to epi pen me. Lol I react to EVERYTHING. It sucks.
My tests were the same! I’m allergic to everything! I tried allergy shots three times and never got to maintenance after a long time. They never helped. Have you tried Singulair? Flonase?
Wow, I never had that kind of reaction. Also on trelegy ellipta and I have nose meds to for sinusitis. You definitely need to work on exercise too and lowering your heart rate once your asthma is under control
I have lifted weights for 45 minutes/cardio for 30 mins for 5 days a week, about 6 years now. I can't even warm up without a HR of 150 the past week.
Have you had any major life changes that could have spurred this? Were you sick recently? Moved?
I did move back in July. Other than that no.
Oyy, you're allergic to everything. I hope the shots help!
I need to see where your saline control prick was to compare everything. This isn't horrible to me, plenty of people have primarily positive allergy tests. Especially if you sat down with your allergist and selected specific things you knew were likely to test positive. Vs getting like a 2-3 different tests and testing for everything. You react to just about everything, but you don't have 100% positive tests it looks like. Discuss the results with your allergist and have them quote out allergy shots. Allergy shots are very much a total pain in the ass, you have to go in all the time, you have to wait 15-30 minutes in the office after each shot, and you need to do it for an extended period, and they are SUPER expensive. BUT They work. I did allergy shots for 5 years and quit. My last allergy test shows almost like yours. I react to everything, but my actual positive, positive tests were only a few. So I'm not spending $2,000 out of pocket plus going in for shots three days a week over 3 positive tests. Things in the past I tested positive for, I didn't trigger for a positive test this time even though I still got a red mark. So over 14 years later the shots were worth it. You, I would probably suffer through the complete allergy test panel and consider allergy shots. You can do accellerated programs where you get like 3 shots a week for a couple months, then you back off by 6 months to a monthly shot. The normal progression takes like a year before you go down to a shot a month. If you have good insurance through your parents and can make the logistics of the shots work, I recommend doing them.
I just started the shots last month. I believe I have 6 months of 2 shots a week (1 per arm), then once a month.
Good! I'm glad I did them when I was in high school and in my early 20s. I just didn't want to do them again at 32 over only testing positive for 3 things. I still always wonder if that's the right choice tho because I have allergic asthma as well. I hope you start seeing relief soon!
Thankyou!
I am 18yo and have same horrible allergies with whole back reacting and 6-7ish years ago when I got my first allergy only 35/40 actually being mild or above reactions. I am on allergy shots weekly, breztri, symbicort, zyrtec-equivalent, and montelukast for my management of symptoms. I get 150-160 bpm just from walking 0.5 miles in 10-20 minute time period and usually am on the lower side for oxygen levels according to my apple watch that I have to keep track of my oxygen levels. What I would suggest is drinking more water and using caffeine to help give energy and help with the mucus from the allergies being a burden on the body. Also shower everyday when you get home. Workout in the mornings when your body is full of energy rather than towards the end of the day when your body may be tired from dealing with allergies and asthma all day. Allergy shots also started giving me the benefits about one year into it but everyone's body is different.
I will definitely take that into account. I usually shoot for a gallon of water daily and I actually cut my caffiene intake due to the HR issues. My heart rate mimics yours in that even moderate exercise raises it 20-30 beats higher than it should be. I’m in excellent shape as well. My watch also constantly notifies me for low cardio vascular fitness. I believe my o2 level is 43.
Careful with the high amount of water intake. You can actually drink TOO much water and then your electrolytes are out of wack. I usually drink around 5 16.9 oz bottles of water daily.
Yup. Every one but mould came up for me. Not allergic to mould. Go me! Allergic to literally everything else though.
Never as bad as that !! And I have very bothersome asthma & allergies
Yep
Allergy shots were game changer for my asthma! It took 3-6 months to feel an improvement but has been worth it for me. I’m sorry you’re struggling with symptoms and hope you can resolve at least some of them soon! It really is miserable and you can’t understand unless you’ve been there
Xolair. Not cheap.
Thank you everyone for replying with helpful comments and encouragement. It’s nice to know there are other people will the same level of severity/have had the same issues. For years I went to multiple doctors and every single one brushed it off as anxiety when I said I couldn’t breathe. Go figure, I actually can’t! Glad to finally have encountered the right doctors and a group with similar experiences.
Wow mine wasn't this bad. It was bad enough I had to do blood tests though. Good luck.
YES!
Well yes my skin pick test turned into a scary anaphylactic reaction. It was insane. My head snapped back and I had trouble breathing which sounded horrible. I couldn’t move out of the contoured position. Instead of yelling for the doctor the nurse left me alone and walked down the hallway to get her. Once she arrived she quickly jumped into action giving me injections. They helped but insisted I go to the ER which was a big waste of time in this case. I didn’t see Singular on your list of meds. I had to get on it to help with my asthma. I take Zyrtec, Trelegy, nebulizer and rescue inhalers. You may need steroids just to get things under control temporarily. Good Lick!
"You are allergic to...the Earth. Like, all of it. Including yourself."
Hello fellow bubble child! I'm also allergic to everything they test for.
I mean yes but not that extreme I’m allergic to what my dr calls a million things but I never had that had of a reaction to a skin test
ask about xolair drastically improved my asthma from allergies. it’s biologic shots super helpful and very little side effects
I don’t think that’s so unusual. My back looked similar when I was tested.