Singulair horror story...if this helps just one person...

celticmoonJune 6, 2008

Not sure whether this will help anyone but it seems worth trying.

My dear husband of 25 years was put on Singulair in January for a new diagnosis of asthma, likely stress induced or exercise induced. The cardiac scare, other family medical crises, huge work stress and his being unable to exercise all seemed to move him into a depression. So he started working with a psychiatrist & cognitive therapist, trying various meds, meditation, yoga, breathing exercises - in short the man did everything humanly possible to get well. And he kept getting worse!

Insomnia, anxiety, panic attacks, social withdrawal, strange fears and suicidal thoughts out of nowhere: "hmm, I could hang myself from these basement rafters... whoa where did that thought come from?". Indecisiveness, wild mood swings, on and on. One minute he is throwing patio furniture, the next sobbing. Ultimately he negotiated a 60 day leave without pay because he was in no shape to work. Even the leave didn't help. How can a man run a major health service system for 20 years, then be unable even to walk to the back of a Walgreens without an irrational panic attack!? It was awful.

Then on May 26, I stumbled across and found some 1900 (!) recent postings re: similar side effects. (No other medication had more than 30 postings). Kids being labeled with behavioral problems, adolescents in turmoil and adults falling into strange mood states. Tragic stories.

So, duh, he stopped the Singulair immediately. It has been 10 days and he is already 70-80% back to normal.

I will add that we are not naive about mental health. (I am a psychologist and he is a psychiatrist!) The onset was so insidious though and there was so much other stress, that neither of us made the connection to the Singulair.

So if you know of anyone on Singulair, child or adult, who is struggling with mood or behavioral issues, PLEASE encourage them to read up and consult with their doctor ASAP. I do not believe this kind of side effect is universal by any means, and it likely requires some perfect storm of predisposition, undeveloped emotional controls (children) and stress.

Still it was 5 months of hell and I wouldn't wish it on anyone.

PS: the FDA is 'investigating' and I have submitted my report. But their findings will take months. Meanwhile the packaging insert warning has been updated 4 times in the last couple minths. Not enough IMHO if you or your kid is still taking it and suffering.

Thanks for reading.

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I am glad you discovered his side effects with the medication and that he is getting so much better. I am sure both of you were frantic with such dramatic and frightening behavior changes.
I am also glad that you wrote the post so thoughtfully, rather than in an alarmist way,as I am sure some people have good outcomes with this medicine!
This is good information to keep in mind.
Hope your DH continues with his progress and is soon back to his old self as much as stress can allow anyway.

    Bookmark   June 6, 2008 at 8:49PM
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Oh, I forgot to say I had been wondering where you were.

    Bookmark   June 6, 2008 at 8:51PM
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Celtic - I remember you mentioning DH having some problems. I'm SOOOO glad to hear that you've gotten to the bottom of this. Thanks for sharing the info. Interestingly DH takes Singulair also for relatively recent onset of adult asthma. Fortunately I haven't noticed any behavioral problems - other than his "normal" ones. Things like this are disconcerting - you never know what kind of side effects you might experience when you start taking a medication. I'm especially leary of newer ones that haven't been around as long for as many of the side effects to become apparent. Another benefit of generics - besides the price.

    Bookmark   June 6, 2008 at 8:58PM
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Scary stuff!

You're very lucky to have made the connection and stopped the downward spiral. I'm sorry for the damage that's already been done, and hope your DH can recover fully very soon.

Sounds like the next big drug-headline lawsuit...

    Bookmark   June 6, 2008 at 10:34PM
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seekingadvice sorry for your ordeal! Thanks so much for the warning about Singulair. I do hope that your dh has fully recovered and finds something to help with the asthma!

    Bookmark   June 7, 2008 at 12:02PM
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Can't believe I'm seeing this! My daughter was on it (as well as another I can't remember the name of,) during her first year of college and definitely experienced some of what you mention. The side-effects weren't as severe in her case, but she was a mess. (Her periods were all goofed up, too.)

We got her off because it turned out that the doctor she saw when her asthma kicked up had her on two almost identical meds; in other words, she was double-dosing! When I mentioned to my dsis what she was taking, she yelled into the phone to get her off immediately, as the two together could make her heart stop. I called dd and she stopped taking them then and there. I wrote to the head of the Pharmacy Dept. (Kaiser,) and dd filled out the appropriate form. I received a phone call and we had a long chat; I wanted him to understand that this had been a dangerous combo and that he should make sure no other doc nor pharmacist should ever allow this to happen again.

After she was off of them, she was put on another steroidal inhaler, which she still uses today as needed. But we've talked about it and I encourage her to use as little as possible, as long as her asthma is in check. My personal feeling is that it's the steroids that can make you crazy. I think the FDA should be taking a closer look at all these recent steroidals, but then they've not been doing much about anything lately, have they? Wonder if I'll get kicked off for saying that??

Anyway, I'm so glad you and dh figured out what was wrong. Just think how many people are out there on this stuff who don't yet know what's causing the bizarre behavior. Thanks for writing about this, Celtic and I am so glad you figured it out.

    Bookmark   June 7, 2008 at 8:43PM
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Thank you for posting this. My DD (2 years, 3 months) has been on Singulair since late last summer/early last fall. We have a previously scheduled appointment with the pediatric pulmonologist on Wednesday, and I'm going to bring this up.

DD is wonderful, sweet, intelligent, and has blow-out two-year old tantrums. She screams until she's shaking, sometimes throws herself on the floor, can be very clingy, and doesn't sleep well. DS (4 years old tomorrow) never did that. Then again, she's strong-minded. It's so tough to tell what's normal, emotionally, and what isn't for someone at that stage of development.

    Bookmark   June 9, 2008 at 3:06PM
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You are so right that it is hard to tell what is a possible med side effect vs. what is normal behavior, aka "terrible 2's". Please though, before you go to your doctor's appointment Wednesday, take a look at the parents' descriptions posted at the link below. There are literally hundreds of postings - every day there are more. I just cannot believe that ALL these parents are so far off base, or that ALL these children coincidentally became terrors. Ask your doctor if he/she is aware of the many updates to the insert (4 this year already I think?) citing anxiety, depression , suicidal thoughts, and most recently suicide. (The FDA is evaluating but some months away from findings and a black box warning decision). You deserve a discussion with your doctor about risks and alternatives. Be firm on that.

Oh and sjeren, I agree with you completely about avoiding steroids. But Singulair is actually a nonsteroidal, and that may be one factor in its popularity.

I know Singulair has been a godsend for some people with severe asthma and I do hope they are able to continue to use it without problems. Being unable to breathe is horrific. But given the reports, I object to widespread use of Singulair as a "first line" medication for 'possible' asthma, mild asthma, and allergies, let alone in toddlers and small children - that is just wrong, wrong, wrong.

Here is a link that might be useful: Singular side effect reports

    Bookmark   June 9, 2008 at 6:50PM
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If your doctor is the type to "know best" and to dismiss the hysterical rants of misguided parents, you might want to have the March 27, 2008 FDA statement in hand (linked below). You could add that there was yet another packaging insert change made April 23, 2008 concerning mood side effects after that March FDA statement.

Your child having "blow out tantrums" seems sufficient reason to proceed cautiously and consider alternatives now, rather than wait for a conclusive study.

Good luck with the doctor Wednesday.

Here is a link that might be useful: FDA investigating Singulair

    Bookmark   June 9, 2008 at 7:53PM
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Thank you for the links. I'm still reading through the testimonials. They certainly are disturbing.

I particularly want to talk with the doctor about DD's immune system. DD's on Singulair, Flovent, and Claritin. We also took her off cow's milk (as a drink but not as a food component or in cheese) after a friend pointed out that DD's problems started after she fully weaned. Last fall was rough, but she's been better in the past couple of months. I'm convinced that she'll outgrown the asthma as her lungs continue to grow and mature (it's only a problem when complicated by a cold or pneumonia). I don't want a medicine that would compromise her immune system long-term, leading to more colds (aside from the tantrums!).

I'll let you know what the ped. pulmonologist says. It'll be interesting. Generally the general pediatrician is more responsive to parent concerns than the ped. pul.

    Bookmark   June 10, 2008 at 12:13PM
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We had a good appointment. DD's off Singulair and Flovent and on Advair. If she has problems not being on Singulair, it's fast-acting and will be easy to start again. DH and I feel very positive. The dr.s are also scheduling a flexible bronchoscopy to get a better idea of what's happening in DD's lungs.

Thank you for your help. I'm grateful that you shared your story.

    Bookmark   June 11, 2008 at 3:50PM
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Sounds like a good plan. I would so appreciate it if you come back in a week or so and give an update on how your daughter is doing behaviorally. I am hoping she will settle down and start to show more emotional stability.

Fingers crossed for you...

    Bookmark   June 11, 2008 at 6:51PM
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I've been taking Singulair (and Advair and Allegra) for years without any major side effects, but it's good to know about this in case it happens later.

    Bookmark   June 12, 2008 at 9:45AM
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It's really frightening how a drug can be a godsend for one person and a nightmare for another. Just within the past few days my long time allergy med - Zyrtec, stopped working. I was surfing the net trying to educate myself on good substitutes. There were many people who began mood and behavior issues after starting Zyrtec, especially children. Zyrtec has been a life saver for me over the past few years but many people have had trouble with it. It's very disturbing.

    Bookmark   June 12, 2008 at 2:08PM
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The odds are that one would NOT have mood side effects. I've read that Merck is acknowledging there may be a likelihood of 3% incidence of mood side effects based on the very preliminary findings. I'm guessing that figure might creep higher.

Thing is, Singulair is VERY widely prescribed. Huge. Something like 31 million prescriptions written. Or in terms of dollars, 4.3 billion (yes, billion) dollars in Singulair sales in 2007.

3 or whatever per cent adds up at that scale. I can't fathom a million people going through what we did ... There needs to be more education or awareness or something.

    Bookmark   June 12, 2008 at 11:57PM
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Just saw this posting and wanted to add my experience. My pulmonary doc added Singulair to my regime of Flovent and Serevent when the drug first came on the market. In fairly short order I began experiencing muscle cramps in odd places, especially at night. I reminded me a little of the kind of leg cramps you get in pregnancy. I thought it was aging (in my 40s!).

Several months into Singulair I went to visit my parents for a week and forgot the pill bottle. Had the Flovent and Serevent, just didn't grab the Singulair. Within two days the odd cramping eased up and by the end of the week it was gone completely. I knew then it must be the Singulair.

Called the doc's office when I returned and the nurse confirmed that it could have caused the cramping and that it was okay to stop taking Singulair.

Discussed it at a regular appointment months later and by then my doc had begun asking all his Singulair patients if they had any new and unusual muscle cramping. He said he was surprised how many patients confirmed they had this side effect. Most quit the drug when they realized it was the culprit.

I think this kind of stuff happens all the time in the pharmaceutical industry. DH used to FDA prosecution.

    Bookmark   June 23, 2008 at 10:25AM
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Celticmoon - Here's an update on DD. Some nights, she's sleeping better. I don't think she's having as many blow-out tantrums, and she's not as forcefully clingy. On the other hand, she's older and learning how to work within our rules.

I did learn that Advair has a black box warning. Wheee. I'm not thrilled about that and am planning to ask at the next appointment. This Friday, DD has a flexible bronchoscopy (exploratory) to look inside her lungs for any clues to her wheezing. Hopefully that'll be my chance to ask.

    Bookmark   July 19, 2008 at 12:23AM
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Most of my children have asthma (and I mean at least five, if not six of them) and I was alarmed that our beloved pediatrician simply prescribed a couple of drugs to solve the problem and did very little else to educate us about asthma, how to use the meds, the inhaler, triggers, the whole nine yards. Singular has been offered to us many times.

I refuse to give my children year-round medicine for a seasonal allergy, which is the option most people are offered by their doctors. We avoid our triggers and take Claritin when necessary to deal with allergy symptoms. I'm no activist, but the state and federal government has decided that it is better for people to have major lifelong breathing problems than tackle larger issues of chronic air pollution, which I think is the major source of asthma in my city. After all, these plants and pollens have been around forever, children used to play outside around the clock, and very few people had asthma. Now, nearly every family I know has an asthmatic child, or in my case, nearly all the children have asthma. I also suspect that food additives are a trigger. Or at least compromise our body's own defenses. Studies show that children growing up in large cities with poorer air quality actually develop lungs that have a diminished capacity. Smaller lungs, and then those lungs don't work as well thanks to the asthma. And lung capacity diminishes as one ages. Egads! This doesn't look good for our urban population. In any case, Celtic, what a harrowing experience. Thank you for posting it.

    Bookmark   July 21, 2008 at 3:54PM
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Well said, Cup, and I heartily agree. It's nice to see you posting again!

    Bookmark   July 23, 2008 at 6:21PM
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My beloved grandson, 2 1/2, has had terrible allergies since they moved to Texas, and the ENT and Pediatrician just gave drug after drug, Singulair, Zyrtec, and a few others. They seemed to help, sort of, but then he began having terrible tantrums, it seemed like he couldn't prevent it from starting and couldn't stop it. I forwarded your comments on to my daughter and she stopped everything - and of course his eyes watered and itched and his nose dripped constantly and he couldn't breathe at night.

She started giving him the Singulair again, and after a few weeks, the awful tantrums started again, along with terrible dreams. I suggested she stop the Singulair again, after trying to deal with a tantrum that lasted for more than an hour (at Seaworld). She finally agreed, and now only gives it if he's starting to have problems. His behavior has improved so much. He may now actually make it through the terrible two's and into the charming three's!

    Bookmark   July 29, 2008 at 9:25PM
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