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PinkBanana
02-05-2004, 07:15 PM
Well I finally saw a lung specialist today. Today I'm having a great day for asthma, my pf numbers are high, didn't need albuterol at all today, and I feel great!
Of course this showed in my spirometry, my numbers were all in the 80-low 90%.
So this specialist thinks I don't have asthma now, b/c they don't hear wheezing and I was doing great today. I've kept up on all my meds perfectly and I've been done with gymnastics for a few days now. He wanted to take me OFF Advair(!!!!!!) for TEN days while they waited to do a methacholine challenge! Mind you..if I miss taking my advair even once, esp at nite, I start to feel out of breathe and cough more. I told him I didn't think I could make it the 10 days without landing in the hospital. He said I could call if I had any problems but I don't trust that..yall know how doctors are about calling back. So instead he kept me on Advair but lowered it to 100/50, and kept me on Singulair(& the rest of my meds).
I'm so frustrated!! It's like when I'm feeling good no one thinks I have asthma, and it's like it never happened it never existed. But when things are bad..their BAD. I swear there are 2 times in my life where I questioned I would get better without complications or a hospital visit..or even get better at all..and last month when I had that month long flareup/pneumonia was one of them. I've never been so sick! And when it looked like it was happening again 2 weeks ago, thats why my doctor referred me. To get my asthma under control, b/c it seemed like what I was on wasn't helping..and instead my dosage is lowered. I'm just confused with how THAT works.
I'm so frustrated b/c I don't want to not be able to breathe again. I hate the hospital, I'm sick of going to the doctor, I'ms ick of coughing, feeling out of breath..
So I got referred yet again to an allergist who specializes in asthma also. Then I also have to meet with an asthma education person to talk about I don't even know what.
I'm thinkin I should change the lung specialist I see...I didn't like him at ALL..he was rude and he just had this cold aura about him I didn't like. I love my PCP..I hate seeing specialists!! =(

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reader1
02-05-2004, 07:28 PM
Well I finally saw a lung specialist today. Today I'm having a great day for asthma, my pf numbers are high, didn't need albuterol at all today, and I feel great!
Of course this showed in my spirometry, my numbers were all in the 80-low 90%.
So this specialist thinks I don't have asthma now, b/c they don't hear wheezing and I was doing great today. I've kept up on all my meds perfectly and I've been done with gymnastics for a few days now. He wanted to take me OFF Advair(!!!!!!) for TEN days while they waited to do a methacholine challenge! Mind you..if I miss taking my advair even once, esp at nite, I start to feel out of breathe and cough more. I told him I didn't think I could make it the 10 days without landing in the hospital. He said I could call if I had any problems but I don't trust that..yall know how doctors are about calling back. So instead he kept me on Advair but lowered it to 100/50, and kept me on Singulair(& the rest of my meds).
I'm so frustrated!! It's like when I'm feeling good no one thinks I have asthma, and it's like it never happened it never existed. But when things are bad..their BAD. I swear there are 2 times in my life where I questioned I would get better without complications or a hospital visit..or even get better at all..and last month when I had that month long flareup/pneumonia was one of them. I've never been so sick! And when it looked like it was happening again 2 weeks ago, thats why my doctor referred me. To get my asthma under control, b/c it seemed like what I was on wasn't helping..and instead my dosage is lowered. I'm just confused with how THAT works.
I'm so frustrated b/c I don't want to not be able to breathe again. I hate the hospital, I'm sick of going to the doctor, I'ms ick of coughing, feeling out of breath..
So I got referred yet again to an allergist who specializes in asthma also. Then I also have to meet with an asthma education person to talk about I don't even know what.
I'm thinkin I should change the lung specialist I see...I didn't like him at ALL..he was rude and he just had this cold aura about him I didn't like. I love my PCP..I hate seeing specialists!! =(


I have been where you are. I myself switched specialists about 2 and a half years ago. No improvement and my then specialist had a terrible bedside manner.

Seriously, there is a doctor out there who will work with you and listen.

Nicole-Brittany
02-05-2004, 08:05 PM
I have been where you are. I myself switched specialists about 2 and a half years ago. No improvement and my then specialist had a terrible bedside manner.

Seriously, there is a doctor out there who will work with you and listen.

I know exactly how you feel. I play tennis and I have 3 games this weekend. I dont know what im going to do because i needed a doctor visit before the games. my docs office hasnt been answering the phone all week so now i dont think i can play. i really need an up on my meds...i hate going to the ER...wouldnt want that to happen again

PinkBanana
02-05-2004, 10:57 PM
I know exactly how you feel. I play tennis and I have 3 games this weekend. I dont know what im going to do because i needed a doctor visit before the games. my docs office hasnt been answering the phone all week so now i dont think i can play. i really need an up on my meds...i hate going to the ER...wouldnt want that to happen again

Thanks it's great to hear some people understand out there that understand!
I can be sustained on Advair 250/50, but I'm really susceptible to illness and I have bad exercise induced asthma. Hopin they could ADD ON to what I'm taking, I don't mind it, and they try to cut back. No one understands that I don't want to compromise my life for asthma anymore..It ruins my life sometimes. I know I can't go without Advair b/c if I miss even one dose, I get outta breath. Now not taking it for 10 days..I don't want to be miserable! I don't want to do my nebulizer and go to the hospital or take prednisone..why can't they understand that. And I'm not sure 100/50 will be enough...I do so well on 250 when I'm not sick. It's just I've had bronchitis 3 times, pneumonia once, and several colds this winter. And each time throws me into a flare up.
Here's what was the real red flag about him, he suggested allergy testing for me..and he said I should have skin testing done. (I have VERY severe eczema).
Question..any of you have a low response to albuterol when your doing really well?? I usually need 3-4 puffs anyway before I respond, my lungs just don't take to albuterol anymore like they used to. Xopenex has replaced it in it's effectiveness.

hc85
02-06-2004, 01:59 AM
Ten days is a bit ridiculous to go off your Advair. You should only have to withhold it for 12 hours. Ask about doing the methacholine challenge. As soon as they see how twitchy your lungs are, you'll be treated accordingly. I think skin testing also may be helpful to determine what causes triggers with your asthma AND your eczema. Have you had your immune levels checked? Maybe you are more immunocompromised than you thought. Also, most specialists see REALLY, REALLY, REALLY SEVERE asthmatics. I'm talking 5+ hospitalizations a year, oral steroids, the whole schmear. So don't be offended when they talk with you like you're a light case. I know it undermines you, but to them they've seen so much worse. Remind them that you're a person to and you won't reduce your life because of your asthma.

dolphins
02-06-2004, 03:28 AM
I haven't really been in your situation - I find it's the nurses who go by no wheezing = no asthma.

I've changed lung dr's once - primarily b/c he wasn't good in dealing w/ teens-young adults. At the time I had better than perfect PFT's - all numbers over 100% - he never concluded that I didn't have asthma - just that the frequent exacerbations I had (and hospitalized for) were made worse by my panicking.

It's taken me some time to find a good dr (GP and specialist) but when you do find a good doc, you'll know.

I hope things get better for you soon PinkBanana. Take care.

dolphins. :wave:

kellie2
02-06-2004, 03:06 PM
Before I say anything, please note that a methacholine challenge also has a high rate of false readings, meaning you could show to be asthmatic and not be, or show no asthma when indeed you are. Some people say this is the 'gold standard' of asthma testing; it isn't. But it's the best we have so far.

That said, you yourself are the best 'test' of whether you have asthma or not, and you've proved it - you stop asthma medicine, you can't breathe. Period. Just because your tests show a high rating doesn't mean squat. My test too was 85%, but that doesn't mean I don't have asthma. And I proved it when I stopped my Advair last summer. I was great for a week, then I started feeling the tightness. Went back on the Advair and I felt fine. I've tried this twice and both times I needed to go back on it. What doctor test is going to tell me something more accurate than that? I personally would suggest you take the other posters advice and find yourself a kinder doctor who won't be so quick to judge you by a sheet of numbers and is so quick to dismiss you as a person. There are many different types of asthma; I myself don't fall into your typical textbook case - I don't wheeze, I don't cough, I don't have any allergies or known triggers, and I was just diagnosed with it less than two years ago. Do I have asthma? You bet. It's just not severe or what most doctors will see in their office. Fortunately, I found a wonderful doctor who has a sweet bedside manner that you don't see very often anymore.

As for putting you on 100/50, please try it and see how you do. The main objective of asthma is to keep it under control with as little medication as possible. Yes, you do wonderful on the 250/50, but you will in all likelyhood do wonderful on the 100, also. You won't know unless you try it, and you'll know fairly soon if it's not enough, so you can simply switch back to the 250 with no problems. My doctor put me on the 500 Advair when I first went to him because I was having sooooo much trouble breathing, and my panic was making it worse. In fact, I was on it for 6 weeks and still wasn't feeling any better, and Advair is known to start working in a couple of weeks. Not for me. So he kept me on the 500 for a few months until I was really feeling good, then he lowered it to 250......and I reacted the same way you did - panic. I was feeling so good on the 500 that I didn't want to go lower, had this picture in my head of immediately not being able to breathe. He said I would be fine...and he was right. He told me to try it and if I started having trouble, just go right back on the 500. But see, that's what makes him the doctor and me the patient - he knew I would be ok even though I was pretty scared. He then kept me on the 250 for a few more months, I think because he knew me fairly well by then and wanted me to be comfortable with that dose before lowering it again. And I was leary of the 100 too, but had a little more faith in my body by then so wasn't quite as scared that time. And a yar ago I took it upon myself to try to lower it even more and was just fine using only Advair 100 once a day. I may even try every other day but for now, I can maintain pretty well on once a day. My point is, once your asthma is under control, many of us can lower our doses or even stop one of our medications and still be ok. But you don't know unless you try, and with trying comes faith in your own body. Being scared is normal because you've now got your breathing back to normal and you're feeling wonderful and you don't want to do anything to rock the boat. But if that boat is going to rock, you're going to feel the waves before it capsizes. Try the 100/50 and see how you do. Believe me, it's such a nice feeling to feel like YOU have control over your body again. In fact, why don't you try it and then let us know how you do on it? It's such a help when people on here can read of someone else doing so well and hearing back from you will help lots of us.

Good luck!

Danitom
02-06-2004, 04:20 PM
My daughter saw a pulmonologist a year ago. I told him of her history with recurrent respiratory infections, chronic cough, etc.....he was very rude to me as well. He tested her for cystic fibrosis(which, thank God was negative) and did allergy test which were ALL also negative. He made me feel like if she didn''t have some MAJOR disease/illness he didn't have time for her......so we go back to the pediatrician and then after this years bout with pneumonia to an allergy/asthma doc....and you know the rest.......so I guess what I took a long time to say is that I have been where you are also. Keep looking and trying new docs until YOU feel comfortable...... GOOD LUCK!

Advair 100/50 and 5mg Singulair is what my six year old 42 pound daughter is taking...........

PinkBanana
02-06-2004, 05:03 PM
Ten days is a bit ridiculous to go off your Advair. You should only have to withhold it for 12 hours. Ask about doing the methacholine challenge. As soon as they see how twitchy your lungs are, you'll be treated accordingly. I think skin testing also may be helpful to determine what causes triggers with your asthma AND your eczema. Have you had your immune levels checked? Maybe you are more immunocompromised than you thought. Also, most specialists see REALLY, REALLY, REALLY SEVERE asthmatics. I'm talking 5+ hospitalizations a year, oral steroids, the whole schmear. So don't be offended when they talk with you like you're a light case. I know it undermines you, but to them they've seen so much worse. Remind them that you're a person to and you won't reduce your life because of your asthma.

That's what I would think also..I know it takes missing only one dose to cough and get short of breath. And ten days? I don't even want to imagine it. Yes I can get to the hospital right away, yes I have great doctors here..but I don't LIKE doing nebs that make me unable to sleep and taking prednisone and getting very sick. We have our Turnabout dance tomorrow and b/c I was on prednisone, I've got a cold sore forming..one of the biggest nightmares for any girl that gets cold sores.
I was hoping they'd check my immune levels, but I guess thats in store for the allergist/asthma specialist visit. Honestly..I was very disappointed now that I think about it..he didn't answer any of my questions, and I feel like none of my concerns were addressed or taken seriously. I understand he sees much much much worse people.. but it's not like this isn't affecting my life. I feel like I deserve to be taken seriously, all my concerns addressed. I'm not sure seeing a lung specialist was the right route for me, after talking with my parents and talking to another friend w/ asthma (and hearing what yall have 2 say) we've decided I should see a different doctor, a very highly ranked allergy/asthma specialist in the area that comes with high recommendation as being friendly and a good doctor..my friend sees her. The lung doctor I saw yesterday gave me a referral to one in the clinic, but I'll still basically be under his care and everything goes through him..and I don't want that. Didn't like him as a person, or a doctor. When he was checking for any lumps by feeling my abdomen(I have my bellybutton pierced), hewa slike do you know what the number one piercing that gets infected is?? I was like yeah I know, but I've taken very good care of it and never gotten an infection and he just kept glaring at me..the nerve of him!! It's not his business if I have it pierced!
I guess I'm gonna try the Advair 100, but I'm a lil nervous as I am looking for a job and I don't want to have problems when starting a new job or interviewing.
I guess the main thing also here is not only making things better now, but for the future also. I'm going off to college next year and my parents are scared for me to leave home and be on my own..b/c we don't know if there will be doctors nearby that are under the insurance, that are good(I LOVE my PCP..I wish he could treat me for everything!), etc etc.
And I'm terrified like nothing else to get skin testing..my eczema is incredibly hard to manage, I've had some amazing luck these past years being it so under control. But when the rashes and the hives come..they don't want to leave. EVERYTHING triggers it, even bandaids!! I'm really hoping they'll go with RAST testing..really really hoping..
thanks for all the help guys, I was really confused when I came home..

chipguy
02-06-2004, 08:55 PM
I have noticed that Abuterol seems to be less effective lately. Could it be a bad batch? My Mom, who has COPD, has noticed this as well. I use Combivent for a rescue (which is not very often) with an albuterol inhaler backup just in case. I know what you mean, though. I used to sometimes get relief with just a single puff. Not so lately.

hc85
02-07-2004, 04:00 AM
I can understand you wanting to see a new specialist. Ask your PCP if s/he knows someone that would be good to see. Don't forget that your PCP and specialist will be working together and you have to like BOTH and they have to like each other too. Hope the new specialist does well. And, yes, you DO have a right to breathe.

jillybelly
02-09-2004, 11:47 AM
I say definitly demand the methacholine challenge. That was the only way I could get my asthma diagnosed. Sometiems, I used to have severe constriction with no sign of a wheeze, and the doctors would say I didn't even have asthma. I was really difficult to diagnose, and also have pretty bad exercise induced asthma... I definitly recommend the methacholine challenge. Good luck!

gingersnap2476
03-14-2004, 12:31 PM
There is a new treatment out there for allergic asthmatics. If you can get your pulmonologists or allergy doctor to do it. It is still having trials and the pharmaceutical company lets th doctors know that they are still looking for candidates. Ask your doctor to do blood work and check your eosinophill numbers and do a rast test for allergies with the blood and get your IGE levels. No skin test so there is no possibility of having an alergic reaction. The treatment is called Xolair. It is given by shots. I believe once a month. My daughters IGE levels are 1551 and she gets 3 shots every 3 weeks. After 1 year she will get the shots once a month for the rest of her life. My pulmonologist is checking the rep from the pharmaceutical company to see if I can get on it. I should know in a week. My Eosinophill was 20 and my IGE was 714. The Xolair acts like a sponge and soaks up the IGE so that you don't have allergic reactions to the things that you are allergic to. Good Luck. Call every pulmonologists and allergist in your area to see who does the Xolair tratments. Don"t take no for an answer at least to the blood work to see if youi are a candidate. It is your health, your body.





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