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Old 06-30-2003, 03:14 PM   #1
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lucille2003 HB User
Post advair withdrawal

For 10+ years I had mild exercise-induced asthma: usually I took my inhaler before exercise (running) and then I was fine; otherwise I would get tired and have to stop. Last summer I started getting tired during exercise even after taking the inhaler. When I told my family doctor he put me on Advair 250/50 and singulair. The singular gave me side effects (agitation, pins and needles), so he took me off singular and put me on Advair 500/50 and claritin ("just to give you more protection"). The claritin made me dizzy so now I am just on 500/50. I started having joint pain and my doctor told me it was because of my running. At that point I started to doubt my doctor because I've been running for 20 years, and never had joint pain until taking Advair.

So I went to a specialist last week who said it seemed that I was on too much medicine and I should quit running for two weeks to see how that impacted my joint pain, and then come back and we would talk about the right medicine for me. He also said exercise didn't really make people feel better, that was just in their heads. The more I thought about this, the more I felt he was a fruit loop. The running isn't causing my joint pain, unless the Advair has weakened my joints, which I guess it could do since inhaled steroids have been shown to cause bone damage in women. Anyhow, regardless of whether the running is causing my joint pain, if I'm overmedicated, the doctor should have addressed that at our first meeting. Plus, once I stopped running, I started feeling horrible; very agitated in an over-medicated way. I guess that the stress-reducing effects of my running had been counteracting the agitating effects of the Advair.

My crisis of faith in my doctors combined with my agitation inspired me to do a lot of web research on my own (NIH articles and the like -- reliable sources). I have decided I never should have been put on 500/50 -- 1000 mcg a day is more than the maximum recommended dose, and is intended for people with severe asthma who are transitioning from other drugs. I have *never* been on any drug except my rescue inhaler (albuterol), which I have rarely had to take except before exercise.

So here is my actual question. I am trying to transition myself off of the Advair. Day 1, I took the 500 just one time. Day 2, I took the 250 just one time. Both of these days I felt fine, and actually woke up this morning feeling perfect. (I had been super nervous, what with no running combined with all these uppers.) This is Day 3, I took the 250 in the morning. Now it is about 12 hours later and my chest feels very tight and I'm just wondering -- is this normal withdrawal? I never felt like this before the Advair; back then my only symptom was exercise-induced fatigue. Should I just tough it out and my body will adjust to the way it was before? Or has Advair changed my body in some way so now I am permanently dependent on it? Or do I just need a slower taper?

For today I think I will take the 250 again, but I would appreciate any information people could give me on Advair withdrawal.

Thanks!

[This message has been edited by lucille2003 (edited 06-30-2003).]

 
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Old 07-01-2003, 06:21 PM   #2
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Hi .... I agree that the 500/50 does seem rather high for the symptoms you describe. Sometimes drs will prescribe a higher dose to start with and then reduce it as the patient feels better. If you've been on it a year and your lung function is good, usually drs will want to be lowering that dose. Have you had any breathing tests while on the Advair?

About your recent symptoms, I am wondering if it might be due to the Serevent in the Advair and the way you are using the puffer only once a day. Advair contains a 12hr long-acting reliever medication (Serevent). If you are taking it only once a day, maybe you are feeling your airways tighten as the Serevent wears off each day. By the way, Serevent can cause pretty severe leg cramps so perhaps that is what you are experiencing as well. The amount of inhaled steroid, even in Advair 500, isn't enough that it should cause bone deterioration. There is some research than long term use (many years) in post-menopausal women can cause some thining. It is much more a concern in oral steroids (prednisone).

I would suggest a really good heart-to-heart with your dr about breathing tests and your medication program. hope you get some good answers.

Barb

 
Old 07-02-2003, 11:48 AM   #3
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Barb,

Thanks a lot for your reply.

My primary doctor never gave me a breathing test. I told him my symptoms (symptom really: fatigue during exercise) and he put me on singulair and Advair. Then when I had to stop taking the singulair I felt fine, but he upped me to 500/50 "just to give you more protection". I had never read anything at that time about how asthma patients should titrate down to the lowest required dose and clearly neither had he. I am sure he intended to keep me on that dose until the end of time. When I went to a specialist for the second opinion, I told him I just wanted to know whether I was taking the right amount of medicine. He did give me a breathing test and said I looked normal. He told me to keep taking the 500/50, stop running and come back in two weeks and he would tell me about medication when I came back. (He also left the examining room twice while I was talking to deal with other patients, and went off on several tangents that had absolutely nothing to do with my situation.) I got a general vibe from him that he thought I was taking too much medication, but apparently he wants to stretch that information out into as many office visits as he can get away with. Part of me thinks I should go back to him with a mission to make him actually answer my questions, and the other part of me is starting to think all doctors are a waste of time and I'd be better off medicating myself. Too bad the drugs all require a prescription.

I am interested in your information that Serevent can cause severe leg cramps. One of my main side effects with Advair has been extremely painful foot cramps. I thought that was a sign of bone damage, but maybe it is something that will go away as the Serevent gets out of my system. See, that's the rub -- my chest feels bad when the Servent wears off, but the Serevent is causing some of my problems. Which component of Advair causes slightly swollen, itchy hands?

I am encouraged by your opinion that I probably haven't sustained long term bone damage.

Thanks again for your post,

Lucille

 
Old 07-03-2003, 06:01 PM   #4
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"since inhaled steroids have been shown to cause bone damage in women."

Miniscule, miniscule amounts. But that doesn't mean you shouldn't be on the smallest amount of Advair that will maintain you effectively.

But two puffs twice a day of high-dose advair WILL make you feel anxious -- a high dose of Serevent (in the advair) is a stimulant. Yes, can also cause cramping, this can go away with time.

I can't say what I think the joint pain is related to, except that if you were to go on just Serevent inhaler and no flovent at all, that would rule out some of it -- does the joint pain go, does the joint pain stay?

There's other inhaled anti-inflammatories (like QVAR in some places in the world, also there is Pulmicort,) and other long-acting inhaled bronchodilators (Foradil/Oxeze for one, and a new one called Spiriva, which doesn't seem to work as well for asthma patients as it does for emphysema patients but would help if the serevent is making you anxious. Downside, not available in the US, I don't believe, and it's also expensive.) You could try different drugs and see if what you experience changes.

I am inclined to agree with you that suddenly coming on joint-pain is not necessarily from running. Perhaps it is real, live osteoarthritis setting in, yes, it's possible. Worth looking into. But if the medication and the running makes you feel better, then you might want to try keeping up with the running and a lower dose of the advair, of course, with the supervision of a competent doctor.

Consider though, I'll mention, that Advair is meant to be taken twice a day -- the serevent only lasts for 12 hours. You don't have to take such a high dose once a day, if splitting it into two smaller doses (I believe there's 100/50 advair, or 125, or something,) works just fine for you.

Drug plans for asthma must be so individually tailored. Advair upsets me a little because it seems to make it easier to medicate people to the nines and not worry about their progress.

Also, I would like to mention, that 'withdrawal' is probably not a very good term for what you're experiencing -- since advair is nonaddictive, the only 'withdrawal' symptoms would be the same symptoms you would notice without the drugs, since the drugs have only worn off.

[This message has been edited by wrin (edited 07-03-2003).]

 
Old 07-03-2003, 08:48 PM   #5
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Wrin,

Thanks for your post.

After reading and thinking about Barb's post, I am starting to think that what I was calling joint pain was really just horrible cramping. Sorry to lead you off track.

"Withdrawal" was the best word that I could think of at the time, but now I think "rebound" would have been a better term. When I first stopped taking the Advair I experienced worse asthma symptoms than I had ever had before. So it could be that my asthma has gotten steadily worse since I started taking the Advair. But I think it's more likely that I was just suffering a (hopefully temporary) rebound effect. I'm really not sure. After a few days of "tapering" myself off (very amateurishly) I just stopped taking the Advair altogether. I had a number of days with uncomfortable chest tightness and many uses of my rescue inhaler (albuterol) without much effect. Some days I was just fine. Stress seems to be triggering asthma symptoms much more than before so I am trying to maintain a regular exercise routine to reduce my stress. I am going to wait until I have been "clean" (without the Advair) for a period of time before I decide what I want to do next.

I agree with you about Advair's propaganda. They don't provide any information on proper dosing in the package insert for patients. If you look at the clinical insert (very long, very small type), buried right near the end there is a table with a lot of big words -- not written for the layperson -- where if you read between the lines you will get the idea that 500/50 is only for people transitioning off of stronger drugs. But they don't actually break it down for the layperson. And they provide no information about how best to stop taking it. And if it's hard for me to figure out, it's going to be hard for a time-pressed doctor too. I am sure my primary doctor had received no information from Advair on how to determine appropriate dosing.

Thanks again for your post.

[This message has been edited by lucille2003 (edited 07-03-2003).]

 
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Old 07-03-2003, 09:37 PM   #6
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Hi Lucille - I was reading your posts and came upon this line: <One of my main side effects with Advair has been extremely painful foot cramps> and that's where I stopped. And I read it again. And then I kind of smiled and thought, 'So that's why'. I have those same foot cramps, and though it was worse when I was on the 500 dose, I still get them from time to time even on the 100/50. I've even had some days when I had to drive with cramps in both feet. And painful? You betcha. I walk on a treadmill but I never once thought that the cramps were from exercise. There have been times when I can be sitting watching TV with my husband, and I'll feel my foot suddenly start to cramp up and I'll jump up and start walking around to try and get it to stop. Or I'll put a shoe on and it'll start. I never realized that it got bad after I was diagnosed with asthma last year and put on Advair. I've been told I need to drink more water, I have a vitamin deficiency, etc. But you kind of hit it right on the head. They used to be terrible, almost daily, but as I said, they're not as bad anymore though I still get them on occasion. So nice to know why now

My doctor started me on the 500 dose of Advair, then lowered it to 250, and now I take only 100/50, and that's the only thing I use, no rescue inhalers. I did try stopping it once and did great for a week, then I started feeling the tightness coming back and honestly, that scares me more than the Advair as I know lung damage can occur if asthma isn't controlled. And I'd much rather be taking a mild controller then to let it go and have permanent lung problems later on that I'll have to take inhalers for, anyway. So be careful and find yourself a good doctor to monitor you and who knows what he's doing.

Take care.

 
Old 10-03-2005, 01:57 PM   #7
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Re: advair withdrawal

I am pleased, in a sad way, to hear that someone else is having Advair withdrawal. My doctor says it is not possible. When I try to stop taking the Advair I experience tightness in my chest I never experienced in my life. Has anyone else had this and did it go away after withdrawing from the drug long enough? Or were you forced to keep taking the Advair? I feel like I am stuck on this drug like an addiction because of this resulting tightness every time I try to wean myself off of it.

 
Old 10-03-2005, 10:37 PM   #8
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Re: advair withdrawal

WOW as someone else said I am sooooo happy to see this but sooo sad at the same time. I am glad I am not alone. I have mild asthma and well was put on Advair 100/50 I tried to come off it and well I get that tightness its worse than when I actually feel as if I am starting to have an asthma attack. I tried to stop taking it once and had this prob so I went back on it about two months ago I tried to come off it again after starting to only take it once a day then once every other day then off completely and well the same thing I suffered through it for about two weeks then gave in and am now back on it but only one time a day. Its a pain I dont think I will ever be able to get off it I am now glad to know where I get those horrible foot and occasional leg cramps too...I never linked it to the Advair but when I think back I didnt' start having them til after I tried to quit the advair the first time then went back on it...As someone else said I take it now just to not have to deal with that tightness I am more scared of the tightness feeling and me not being able to breathe than to actually take the med...Maybe someone will come up with a solution for how we can get off this darn med...

 
Old 10-04-2005, 06:00 AM   #9
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Re: advair withdrawal

This is what my doctor told me to do about Advair: She gave me two prescriptions - one for the Advair 250/50 and the other 100/50. She told me to start out with the higher dose twice a day until my cough went away, then to scale the 250/50 back to once a day. If that worked, I could start on the 100/50 twice a day and try to go with that. It seems that most people who are managing their asthma properly can get down to the 100/50 and stay there. I agree with everyone else, the 500/50 was much too much medication for you. My doctor told me she hardly ever prescribes that dosage. Right now, I am still on the 250/50 once a day. I have heard that the serevent component is only good for 12 hours, but it seems to work for me. If I go several days without taking it though, my cough comes back along with some tightness.

To address someone who mentioned that there were side affects: I agree there are. When I was taking Advair twice a day, sometimes I couldn't get out of bed I was so stiff and achy. Now I seem to be okay with the once a day. I believe everyone is different though. Some people have side affects, some don't. And those of you who have started Advair and try to taper down and say you feel more tight than ever before. Well, that is logical. Your lungs get used to the bronch part of the medication. It opens you up and you feel better. You stop using it and you feel dramatically different. I do have a problem with that. I personally think there are other ways to open up your airways. Magnesium is great for that! But for the steroid part of the drug, that's different. I don't really know of anything natural that will help as well as an inhaled steroid. But I am open to altenative medicines and some people are not. I would certainly give them a try.

 
Old 10-04-2005, 12:12 PM   #10
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Re: advair withdrawal

Asthma medication as it is dispensed today is still in an experimental stage as I see it. Each and every protocol has its downside. I can speak from my own experience. I had been on Advair for a few years (100/50) and I found myself waking up at night with terrible heart poundings. Then I was switched to QVAR which seemed very promising at first -- two puffs twice a day . Again the heart poundings started so I put myself on two puffs once a day in the mornings. That cured the heart stuff but didn't do much for the asthma symptoms. I find that I need the Albuterol about twice a day to alleviate some of the wheezing (whereas at one time I hardly every used the rescue inhaler). The wheezing and throat clearing are very annoying -- not to mention embarrassing. Singulair was a disaster -- it actually caused bronchitis. I am an older woman with late onset asthma so perhaps my situation differs from many of you who are still into the strenuous exercising.
I will be asking my doctor for a new regimen on my next visit -- something that will bring about better control Any suggestions?

 
Old 10-06-2005, 09:41 PM   #11
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Re: advair withdrawal

Singulair and 250/50 twice a day is what I take for asthma, and my symptoms were quite a bit more severe than what you describe. It sounds like your doctor went for overkill. Probably just the 250 twice a day would work well for you (though personally, I consider singulair wonderful stuff).

I have heard of Advair causing joint pain.

If I were you, I would stay on the Advair 250 twice a day, and if you think it's causing you joint pain, ask your doctor about trying Pulmicort Turbohaler.

 
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