HealthBoards

HealthBoards (https://www.healthboards.com/boards/)
-   Asthma (https://www.healthboards.com/boards/asthma/)
-   -   New to Asthma, someone help, please (https://www.healthboards.com/boards/asthma/900757-new-asthma-someone-help-please.html)

kenanali 05-13-2012 10:25 PM

New to Asthma, someone help, please
 
As you can all tell, I'm getting pretty desperate and hoping to hear from some people who've been through all of this...

I'm a 24 year-old guy. I was diagnosed with Asthma about 5 months ago (in January). I'm not allergic to pollen, dogs, seafood, any other medication.

My first flare-up was bad, had a cold, sinusitis and then was also told that I'm allergic to cats. I had been living with a cat for a year and never had any allergic symptoms.

For my first flare-up they gave me a Medrol dose-pack and Advair/Albuterol. It was relatively well controlled I'd say, but with with more than 2 uses of Albuterol per week. Which I can tolerate.

2 weeks ago, when pollen season came around, I had another horrible horrible flare up. I was put on the Medrol dosepack again, which didn't work so after multiple ER visits, they put me on 60mg of Predinisone per day for 5 days and replaced my Advair with Symbicort. Started me on Singulair as well...

[B]The questions I have for all of you fellow sufferers are as following:[/B]

- I'm on a slow taper-down of Prednisone now, and I understand that I will have some bad side-effects, which I can deal with. It's the breathing issues that I'm worried about. [B]Won't they just come back when i'm off the Prednisone?[/B]

- I don't understand how a steroid boost (or whatever you call it) is a long term solution?

- Has anyone randomly developed an allergy to pollen in their adulthood?

- Should I be afraid to become allergic to other random things, like foods?

- I'd love to hear from someone else who has adult onset Asthma and what their journey with meds has been? I've been on 7 different kinds of inhaled steroids and so far Symbicort is the only thing that seems to work (probably because of the LABA in it).

- If my symptoms come back when I'm off the Prednisone, is Prednisone my only solution? As many of you know it is great because it lets you breath, but has horrible side effects.

My current meds are:
- Symbicort 160/4.5 2 puffs, morning and evening
- Singulair
- Clarinex
- Mucinex
- Albuterol for rescue

Please help an Asthma noob. This has taken over my life in the past 5 months. I need to find some kind of solution that can control it at least...
-K

sue430 05-14-2012 07:22 AM

Re: New to Asthma, someone help, please
 
First of all, don't worry about the prednisone for life thing. Very few asthmatics need to take prednisone as a maintenance med. Prednisone is used during asthma flare ups to reduce the inflammation in the lungs. Bursts like you are experiencing are the norm. It is kind of like taking an antibiotic when you get an infection: to quickly get rid of the inflammation so that your lungs can go back to normal. The idea is to get the lungs calmed down so that you can go back to your normal activities. I was adult onset (more or less-I think I actually had mild intermittent asthma as a kid but didn't realize it). I was so out of control when I was finally diagnosed that it took me multiple med tweaks, allergy shots and a year and a half until I got it under control. I started with prednisone, plus high dose pulmicort and albuterol every 4 hours until it settled down. This helped, but I still had way too frequent flares. So we added singular (I was already using clarinex and nasacort from way back when). That helped immediately, but my asthma still did not stay well controlled. The I had a really really bad flare, ended up on a long long burst of pred & the dr switched me from pulmicort to advair. It took almost 2 months for me to completely recover from the flare, but when I did, I felt better than I had in years. After that, my control was much much better. I still needed a couple of prednisone bursts per year, but as my allergy shots kicked in I got better & better. I went from advair 500 down to 250 then down to 100. I have not needed pred in 2 years, and just now switched from advair to flovent, which is 1 med instead of the 2 meds combined. Time & patience and a good relationship with your dr are key. As far as the allergies, it takes continued exposure to something before you become allergic. I never manifested any signs of allergies until I was 18 and spent some time in Brazil. I wouldn't worry that you will keep getting allergic to more and more things. Were you actually allergy tested anytime recently? If so what did the test show as far as allergies? If you have not been tested, I would highly recommend doing that, it can be a huge help to know for sure what you are allergic to. Sometimes what we think we are allergic to is not actually the thing causing the problem. For example, it might seem that you are allergic to your cat (and may well be because they are notorious offenders), but it could actually be that it is dragging in pollen from outdoors & you are allergic to that. Another thing that might be helpful is to keep a log of each time you develop symptoms, and include the date, time, day of week, and what you were doing prior to the attack occurring. You might find patterns of certain things setting you off. All of this will help you avoid frequent flare ups. If you are actually allergic to cats and still have yours, you are probably not going to get it under control until you do something about the call allergy. Who is treating your asthma? I would recommend an allergist (makes sense since it seems you think you might have allergies) or a pulmonologist. I have an allergist treating mine because I am highly triggered by my allergies. Did your dr give you an action plan telling you exactly what to do depending on your symptoms so that you can hopefully avoid er visits in the future? Are you seeing him/her frequently? When I was first diagnosed, I had to go in every couple of weeks for awhile so he could monitor me, than monthly then every 3/4 months, and now just about once a year unless I am having problems. Having been in your shoes, I totally understand the frustration you are experiencing. My asthma was out of control for almost 2 years before I was even diagnosed (that's a whole other story!). But once I was diagnosed, I was so happy to finally know what was wrong. But when I started treatment, it was almost worse that feeling lousy all the time, because I would experience feeling good for a few days & then go back to feeling lousy. That was really really hard on me and I wanted to give up more than once. What kept me going was my wonderful allergist, who kept insisting that my life would be back to normal one day. I wasn't sure I believed him, but it was enough to keep me trying to get better. Don't give up!!!!!!!!! It WILL get better! You can help yourself by doing what you are doing now, asking questions and educating yourself as much as possible. I used to go to my appts with like 3 pages of questions every time in the beginning. My dr respected that I was learning & trying to help myself, and really made me a full partner in my treatment, letting me try things here & there and always listening to what I had to say. So don't think that life as you knew it is over. You will have your life back, it might take a little while, but it will go back to normal. Actually, I can do things now that I couldn't before being diagnosed because the asthma prompted me to start allergy shots which I never would have done (hate needles!) if it hadn't been for the out of control asthma, now I can enjoy much more outdoor time with fewer symptoms. Hang in there , and ask all the questions you need to, and I hope things turn around soon for you!

Machaon 05-14-2012 08:08 AM

Re: New to Asthma, someone help, please
 
[QUOTE=kenanali;4979218] ... My first flare-up was bad, had a cold, sinusitis and then was also told that I'm allergic to cats. I had been living with a cat for a year and never had any allergic symptoms.[/QUOTE]

Allergies are very complex. Usually it takes several allergens to trigger a significant reaction. Just a few allergens might cause some mental fog, or some tiredness, or some stuffiness or running in the sinuses, or a mild headache, or some slightly labored breathing; or very few effects.

You may be allergic to cats, but only get an asthmatic reaction when also exposed to other allergens, or to a cold or infection.

You could have several mild food allergies, which you would always be exposed. The more allergens for which you are exposed, the fewer additional triggers to cause an asthmatic reaction.

You need to find out about your allergen enemies and start eliminating them from your life, whether it be your cat, or dust, or food additives like vegetable gums, or various foods, etc.

You may consider showering more often, especially after coming in from the outside on a high pollen day. The longer the pollen remains in your hair or on your skin, the more chance for allergy/asthma problems.

janewhite1 05-14-2012 08:10 AM

Re: New to Asthma, someone help, please
 
It is definitely possible to develop allergies in adulthood, and developing allergies to pollen is QUITE possible. I developed allergies around age 20, it slowly got worse, then at 29: Bang, asthma. My first attack was also bad, and it took about 4 months for me to feel reasonably well. Over the first 2 years, I tried a couple DOZEN different meds! Right now I'm under excellent control, though.

Pollen is my worst trigger, definitely.

I would see an allergist for skin scratch testing. If you are allergic to pollen, dust, etc, then allergy shots can help a LOT. For me, they took about a year to start working, but they are the difference between "nuisance" allergy symptoms and needing my inhaler every darned day for the whole darned pollen season.

Also, Clarinex is not a very strong antihistamine (Very expensive, not effective). Most people do better with Allegra or Zyrtec. (OTC, cheap, but better.) Also you can add a Benadryl at night.

Will you develop food allergies? Anything's possible, but just because you have hay fever, that doesn't mean it's likely. Lots of people have pollen/pet allergies and no food allergies, so don't go borrowing trouble.

kenanali 05-14-2012 08:42 AM

Re: New to Asthma, someone help, please
 
[QUOTE=sue430;4979386]First of all, don't worry about the prednisone for life thing. Very few asthmatics need to take prednisone as a maintenance med. Prednisone is used during asthma flare ups to reduce the inflammation in the lungs. Bursts like you are experiencing are the norm. It is kind of like taking an antibiotic when you get an infection: to quickly get rid of the inflammation so that your lungs can go back to normal. The idea is to get the lungs calmed down so that you can go back to your normal activities. I was adult onset (more or less-I think I actually had mild intermittent asthma as a kid but didn't realize it)...[/QUOTE]

Thanks a lot Sue430. That was very helpful. I was hoping that my journey to controlled Asthma would be shorter, but I can't really speed up time or expect my docs to figure out what works for me faster...

I've taken all the relevant steps to ensure I'm avoiding my triggers. As I had said, I was never allergic to pollen, but this season (I live in NYC) has been horrible. I was tested 2 weeks before the pollen season started and was negative on Pollen. But I feel like being outside does get me all stuffy, and then comes the chest tightness.

As far as my other triggers go, I've taken all the relevant steps for dust. Got allergy covers, air purifiers, wash my sheets regularly. Also, a friend of mine took my cat so as much as I miss it, I gave it up because it was killing me.

[B]Some follow up questions for you guys that I'd really appreciate if you could answer:[/B]

- How can you tell when you're having an Asthma attack vs. panic. I think I've developed mild anxiety because I'm new to all of these symptoms

- Do you regularly measure Peak Flows? My normal is around 500 - 550. But I'm still on a 30mg taper down of Prednisone. And I expect my peak flows to go down after I'm off the Prednisone. I've heard peakflows are a good way to know if you're about to have an attack. Can you tell me how all of that works?

- When I wake up in the morning I'm very mucousy and congested in my lungs? I can hear the whistling/wheezing when I exhale hard. Do you guys feel the same way? I've been taking Mucinex which helps, how do you deal with it? Is this normal?

I didn't realize how helpful these boards are. I hope that soon after I stop badgering everyone with my worries. I'll be able to support someone else who just found out they had Asthma.

kenanali 05-14-2012 08:46 AM

Re: New to Asthma, someone help, please
 
[QUOTE=Machaon;4979420]Allergies are very complex. Usually it takes several allergens to trigger a significant reaction. Just a few allergens might cause some mental fog, or some tiredness, or some stuffiness or running in the sinuses, or a mild headache, or some slightly labored breathing; or very few effects...[/QUOTE]

Thanks for your response Machaon.

I was tested right before the pollen season this year and was only positive for dust and cats. Now it seems that anecdotally I'm also allergic to pollen because I get stuffed up and asthmatic when I'm outdoors.

What is odd is that I've never had itchy eyes, runny nose etc, even while I had my cat. For me it just seems to go straight to chest tightness and labored breathing. Has anyone else felt like that?

Titchou 05-14-2012 09:10 AM

Re: New to Asthma, someone help, please
 
Everyone has their own individual reactions to allergens so that it's not always the same. Once you get your allergies and asthma under control, you may be able to have a cat again. I do - and a long haired one that sleeps with me!

i do also suggest a better antihistamine. Zyrtec works great for pet allergies and for dust mites. You might also consider injections as they generally work well for those two also.

As for how to know if it's anxiety or asthma, the easiest test is whether the albuterol works. And you should take it at the FIRST sign of an attack - whatever that is for you. FOr me it's cough or chest tightening. It will take time to learn which yours is but you will eventually. As for allergies, I've been tested 3 times in my life and they all move around...some that used to be worse are now not so bad and vice versa. Pets have always been near the top as has ragweed - which is always at the top of my "hit parade." I was actually a 3 or 4 on everything they tested for last time around but, as I said before, shots help a lot.

As for peak flow meters, a lot of people find benefit to them. I never did. I always felt that I could tell when I was having an attack and didn't need the peak flow to convince me. I didn't get asthma until I was 50 so maybe 40 years of allergies before that just puts me more in tune with my body.

It's all trial and error. Everyone is different and you just have to figure out what works for you. Be sure that you have an asthma action plan - a list of things to do when you have an attack, get sick, etc. It will help you regulate your asthma and know what to do when. For example, I'm on one puff of Flovent per day. If I get a cold, I go to 2 puffs a day and up to 4 if needed. Also, when I went home to New Orleans for the first time after Katrina I wet to the 2 puffs per day for 3 days before I went, all while I was there and 3 days after I got back as a "just in case" as the air quality was bad for a while after the storm. THose are just some examples.

Let us know if you have more questions.

sue430 05-14-2012 10:13 AM

Re: New to Asthma, someone help, please
 
A couple of questions: what did you test positive to? cats & dust? If you are highly allergic to cats, getting rid of it will help, but it is a HUGE process to get all the cat dander out of your home. Have you given it a thorough cleaning? Clean the carpet, etc? If you are allergic to dust, that could be why you are mucousy (I thought mucousy was my made up word, glad to see I'm not the only one using it!) in the morning. Are you sleeping thru the night, or waking up in the middle of the night because of it? As far as peak flows, they have never been that helpful for me unless I am in a really really bad flare. Many times I can be coughing uncontrollably & my peak flows will be fine. I only use my peak flow meter if I am feeling awful & want to make sure that I'm not doing worse than I think. We have all been where you are now, before you know it you'll be an old pro and helping others, just like you said. Also I agree with the other poster about knowing if symptoms are asthma related. My dr used to tell me to give it a try, and if it didn't help my symptoms were probably something other than asthma. If it did help then I would know to use it in the future in the same circumstances.

kenanali 05-14-2012 10:28 AM

Re: New to Asthma, someone help, please
 
[QUOTE=sue430;4979496]A couple of questions: what did you test positive to? cats & dust? If you are highly allergic to cats, getting rid of it will help, but it is a HUGE process to get all the cat dander out of your home...[/QUOTE]

I tested positive to cat and dust. As far as the cat goes. I had the apartment professionally cleaned by someone who is certified to remove dander. They used steam cleaning and HEPA vacuums.

I have my own HEPA vacuum that I use every 2 weeks to remove dust.

The reaction to pollen just came around from out of nowhere.

Dust and pollen just seem so unavoidable. Aside from allergy shots, what do you think is a fix to avoid me from puffing my albuterol every 4-6 hours.

janewhite1 05-14-2012 10:34 AM

Re: New to Asthma, someone help, please
 
Dust and pollen [B]are[/B] tough to avoid. Still, I focus on keeping them out of the bedroom. My bedroom is very plain, hardwood floors, no "stuff" around other than my bed and dresser and clothing.

I put a special cover on my mattress and pillows to seal out dust mites, and I wash the sheets in hot water every week. I shower before bed every night and rinse my sinuses with saline. I also keep the windows closed, and I have a HEPA air filter next to my bed.

For the allergens you can't avoid, antihistamines can help a lot once you find the best one. Symbicort comes in 2 different strengths (80 or 160) and you can take up to 2 puffs twice a day. If you aren't on the maximum dose, ask for a higher one.

And do consider starting the allergy shots. It won't make a difference to this year's symptoms, but it will next year.

Titchou 05-14-2012 11:27 AM

Re: New to Asthma, someone help, please
 
You might trya benedryl at bedtime. It might help with the waking up stuffed up, mucusy, etc.....

kenanali 05-14-2012 04:58 PM

Re: New to Asthma, someone help, please
 
[QUOTE=janewhite1;4979511]Dust and pollen [B]are[/B] tough to avoid. Still, I focus on keeping them out of the bedroom. My bedroom is very plain, hardwood floors, no "stuff" around other than my bed and dresser and clothing.

I put a special cover on my mattress and pillows to seal out dust mites, and I wash the sheets in hot water every week. I shower before bed every night and rinse my sinuses with saline. I also keep the windows closed, and I have a HEPA air filter next to my bed.

For the allergens you can't avoid, antihistamines can help a lot once you find the best one. Symbicort comes in 2 different strengths (80 or 160) and you can take up to 2 puffs twice a day. If you aren't on the maximum dose, ask for a higher one.

And do consider starting the allergy shots. It won't make a difference to this year's symptoms, but it will next year.[/QUOTE]

Thanks for your response Jane.

I got the allergy covers and what not for dust mites so I think I'm good inside my bedroom.

It's the outdoors that's really annoying for me. I'm still tapering off my steroid boost (at 30mg of prednisone right now.) but I still get chest tightness immediately when I'm outside. I'm also on the highest dose of Symbicort, the 160/4.5 2 puffs / twice daily.

My prednisone is on a slow taper and I'm afraid that when it's over all of my horrible reactivity to pollen will come back. The oddest thing is that I've never been allergic to pollen in my life before.

Has anyone had a really bad reaction to pollen? How did you deal with it?

I don't want to have to stay on prednisone or use Xolair (I've heard it's very risky due to the possible anaphylaxis).

janewhite1 05-14-2012 05:14 PM

Re: New to Asthma, someone help, please
 
Yup, immediate chest tightness outside. That was my life in 2010, and it was seriously NOT fun. At one point I actually resorted to a mask.

I say go for the Xolair, if possible. My allergist has dozens of patients on Xolair, and one of his nurses recently mentioned that they've NEVER seen a case of anaphylaxis from it. Yes, it happens, but it's extremely rare. It is much much safer than prednisone!

It's expensive, so getting insurance approval is tough, but you may as well start the process. The first step is getting a blood test to measure your IgE levels. This both establishes your eligibility and finds the correct dose.

kenanali 05-14-2012 05:30 PM

Re: New to Asthma, someone help, please
 
Jane, how did you end up dealing with the Pollen reactivity then?

janewhite1 05-14-2012 05:33 PM

Re: New to Asthma, someone help, please
 
1) Allergy shots.

2) Flovent helped a little immediately, but after several months of taking it consistently, my lungs seemed to become less reactive.

3) I also discovered that my chronic heartburn/acid reflux disease was contributing to my asthma. When drug treatments failed to bring it under control, I had surgery.

I still don't like being outside on a high-pollen day, I still get some chest tightness, but it's no longer a major deal.


All times are GMT -7. The time now is 08:01 AM.