News about Singulair

Hi Melanie!

I just wanted to chime in that I appreciate your post. I have Lupus and take several meds. I carry a list of my meds (actually a brief summary of my entire med history) with me, and anytime my physician prescribes something new, I always pull out my list for the pharmacist to review. I've received many warnings of contraindications this way, and have been given advice, for instance, that maybe I should take this med at a different time of day than this other med. Not that I don't trust my doctors, but I see specialists for certain things because that's what they do all day--same thing for my pharmacist. I expect them to be more knowledgeable about the drugs they're dispensing. Fortunately, they've always been very helpful and cheerful.

--Sharon
 
I"m a retail pharmacist & do clinical work (medication therapy management). I agree with Sharon about dr's who specialize are really educated on "their" medications, as a general pracitioner might have their interests,...their knowledge tends to be "general". Just as a oncology pharmacist would know much more about chemodrugs than I would. YOu simply cannot know EVERYTHING!!!!

I"m glad ya'll have had positive experiences with your pharmacists. In general, we are a pretty nice group of people. :)

~Melanie~

Jadon born 11/23/05
Justin born 1/17/04
Jory born 4/9/94
 
What medicine doesnt cause suicide risks and behavior changes nowadays???? I realize things have to be researched but sometimes I wonder how mamy of these "side effects" are a product of our litiginous society?

For people wanting to stop this medication, I'm hoping you discuss it with your doctor. It would seem that a person would be more at risk of dying of an asthma attack from abruptly stopping their meds than from a suicidal risk that hasnt been proven yet.

It is important to realize that any ill-outcome that occurred while taking a medicine has to be added to the side effect list, ie. if I got hit by a car while on a med then "increase risk of MVA would have to be added".

It's good to be informed, but you have to take everything with a grain of salt and discuss things with your doctor/pharmacist/family.

(And, no, I dont own stock in the company)
 
When the FDA gets involved with the company to investigate a risk, these are not just random false allegations being made.
 
Pippa's comments are right on actually.


I think it's important for people to avoid the water cooler talk, which is uninformed at best, on deciding the best medications to take (Pssst! I hear so and so drug is bad!") And frankly, I wouldn't trust just the word of just one doctor or pharmacist. Discuss your meds across the board (your docs AND your pharmacist) and make sure that there isn't some interaction that the prescribing doctor hasn't considered. Your specialist may be a whiz at certain medications but not considered the side effects of some other issue that your primary care doctor is handling or vice versa. I recently ran into this issue myself and decided to ask questions and hit the medical library.
 
Generally speaking, Pippa is right in that you should not just drop a medicine b/c you hear something bad about it, or turn it down if prescribed that medicine just b/c somebody had a bad experience with it. BUT, when you have some horrible side effect, it warrants a deeper look and that sometimes involves stopping the medicine. Doctors often do not know the rare side effects. I was one of 1200 people who experienced fluid around the brain from a medicine I was prescribed, and therefore the most excruciating headache imaginable. My doctor had never heard of that side effect, the pharmacist didn't provide any additional info when asked. Having a PhD in research and statistics, I had done the research online myself (on reputable sites) and figured it out and stopped the medication immediately, and later had a doctor confirm what had happened. It was a simple medicine - doxycycline. Does that mean everybody stops it? No - most don't experience side effects. I took Drixoral in the 80's and saw green hands and arms coming out of the wall above my bed - not much thought there- my parents never gave me that medicine again. When your child enters a depression and considers suicide, and the FDA is investigating the very drug that he is taking as being possibly related to increased suicide risk, then it seems sensible to stop the medicine and find an alternative. I hardly think they would have stopped if they thought he would have an asthma attack and die. For the FDA to investigate, there must be many possible patients who have had this experience and actually reported it. They don't just investigate a drug due to "water cooler talk."
 
<They don't just investigate a drug due to "water cooler talk.">
Hence my comment to avoid believing such talk when there is more reliable information out there.
 
First, I want to say this is hard for me to write about. Please let me tell you about my daughter, or who she used to be. She was a bright, well adjusted little girl. Her doctor had always told us she was very smart, and she was! She had a wonderful laugh, loved everything life had to give. She was diagnosed with asthma right after hurricane Isabell came through Central Virginia, when she was three years old. We have seen and been treated by an Pulmoligist (sp), who started her on Singulair. She is now 7 years old. Last summer we noticed subtle changes in her mood, and un-willingness to go anywhere with anyone. She started school, and breezed through. Then came 1st grade. Her inability to focus became apparent. As well as other subtle changes in her school work. I kept asking the doctor if it was her asthma medications, I was assured there was nothing to worry about. She has an awsome teacher this year in second grade, however there were more and more issues, focus, aggitation, skin problems, picking at her hands till they bleed. These are just to name a few. Her teacher said there was a problem, but she just could not put her finger on it. December rolled around, and she started having "eye darting", regressed more into herself. Lapses in memory more pronounced. They suspected seziure activity. Hence the last several months of massive testing. We have seen every specialist known to man. We started with an EEG, then to an MRI and we just finished a 24 hour EEG. ADD testing was next, which they determined to be the problem. Five days ago we started medication for ADD, she had an adverse reaction, and is still coming down from that one. during all this, my daughter finally asked me "mommy why did God do this to me". I just sank in my seat. Never did it occur to me that Singulair might be the problem. I trusted my doctors. I have cried almost every day since Christmas. I worry about what this medication might have done to her permantly. I am sick with worry. Her symptoms mirror exactly what I have been reading here. I am not even sure if I have written everything down, as to what she has been going through. Her grades have dropped, and we were told because she could not retain information, nor focus and have to be redirected, that she is being suggested for retention. She has bouts of staring, blank moments, missing skills needed to go on to third grade. If I can do anything to push the problem with this drug and it's side effects with the FDA and anyone who will listen, I WILL!!!! I know this is long winded, but as I write this, I feel hope. All want my 7 year old happy, strong, confident girl back. She can't make decisions for herself about what we give her, I am her only hope. And, I will not give up, until the FDA and the drug manafacturer listen to us!
 
Terry Anne, thanks for sharing your heartwretching story! I cannot even begin to imagine the pain & worry you have for your daugther. She will be in our prayers.

I assume your daugther has discontinued Singulair now? Have her symptoms improved since discontinuing medicine? Normally side effects such as "suicide thoughts" will discontinue shortly after a medication is withdrawn, if it is in fact the medicine.

Hang in there, and keep us posted.


~Melanie~

Jadon born 11/23/05
Justin born 1/17/04
Jory born 4/9/94
 
Melanie,

Thank you for your wonderful posting. I am not sure if it is Singulair. Many people who know her well, just do not believe it is ADD. We just stopped tonight. So... I am not sure how long it will take to see any improvement. Now that they have thrown her on an ADD medecine, it may skew it somewhat.

Thank you again, for keeping her in your prayers, that's all we can do at this point.

Warmly,
 
Which ADD medicine was she prescribed? It is usually recommended to do just one change at a time. For example, discontinue Singulair for a week and see if there are any changes. Or, continue with singulair and add ADD medicine,...otherwise you may never realize the culprit.
You'll find that this forum is an awesome place for support. Feel free to lean on us. We're here for you and your little girl. ((hugs)) ((hugs))

~Melanie~

Jadon born 11/23/05
Justin born 1/17/04
Jory born 4/9/94
 
Terry Ann, I am so sorry to hear about your daughter. I have an 8 year old daughter - these years are too precious and I wish you all the best in finding out the answer for her. If you google singulair, FDA, and suicide, you will find a bit of info out there. They, along with the manufacturer, are definitely looking into the problems caused by singulair. Too many people have had problems. I find that too often, doctors are courted by the drug manufacturers and don't bother to really learn about the medicine and its possible rare side effects. I'm not talking about all doctors, but some and I've run into my fair share of those. Not just b/c they get extra whatever from the drug companies, but also b/c they are so busy and overloaded. Still, when a patient comes to them with a concern, rather than say they never heard of it and dismiss it, they need to investigate. Too many times, the patients have to take the bull by the horns, so to speak, and handle their healthcare themselves. I now have a wonderful doctor who wants to find answers, who will look into things she isn't sure of, and who is never in a hurry to get on to the next patient. I encourage you to search for a doctor like this for your daughter. They are out there. Shana
 
I witnessed something a bit ironic yesterday at work....

...a bunch of office workers were outside discussing Singulair (their kids have asthma) and the discussion was how they were going to take their kids off it. Well, they were all smoking cigarettes!! I'm guessing they chose to ignore the Surgeon General's warning about cigarettes and its links to asthma and cancer. This is a strange world we live in.
 
Good observation! Sometimes it seems that some people sweat the really small obscure stuff when the big giant stuff stares them in the face. My MIL for example is 100+++lbs overweight. She informed me that she no longer uses toothpaste with fluoride because of the risk to her health and berated me for letting my kids use it(don't even get me started). I am looking at her thinking that perhaps her 100 lb weight issue is a little more risky to her health than fluoride in her toothpaste! Then again it is my MIL and I am not very objective nor tolerant sometimes with her...}(
 
Terry Anne,

I understand what you are going through. My son was 5 when they started him on singulair. He became very unfocused. My child who was tested at age 4 as being two grades above his level began to have problems with school. We were told to have him tested for ADD. He was considered to have borderline ADD. His pediatrician left it up to us to whether we wanted to put him on ADD meds. At the time he was on Singulair and Zyrtec along with two inhalers. We felt he was already on too much. He has struggled in school. He gets by with mostly bs but some Cs. But we work very hard with him for those grades.

Fast forward, He is now 13. The side effects you describe are the same things we have seen in our son. We began to think he was bipolar. He just seemed to be riding an emotional roller coaster all the time. We never knew what to expect next.

We took him off Singulair on Friday. Consulted his Immunologist on Monday. I have to say he is a different child. The hostility and anger are gone. He smiles and is happy. I asked him to correct some homework he got wrong from the previous week. Normally it would be a shouting match and it would take over three hours to get him to do it. Last night he said sure and he did it.

Time will tell with school and being focused. My DH and I are just happy to have him smiling.

Take care and you may email me if you would like to talk.
[email protected]
 
Wow, really interesting discussion. The last comments about the smoking reminded me of my very first potential client. She wanted to sell her house and move "to the country" because her young son had astma which she traced to the pollution in the city. Mind you, the whole time I was there she was smoking one cigarette after another, the whole house was filled with smoke - yuck. But yeah, it is the big city pollution that causes her son's health problems. Good grief!!!

Elaine, I don't think you should second guess yourself. You did what you thought was right for your son. I hope your son will get better soon. Incidentially I was just talking to a friend about a mutual friend's daughter which I thought sounded awfully similar to your son. The girl was diagnosed with asthma a few years ago and put on medication, she almost immediately developed side effects (suicidal thoughts, depression, etc.), the doctor claimed there was no correlation and added additional medication for the "depression". They went from doctor to doctor, medication and dosages were changed, it didn't get better, it got worse, much worse!! Eventually, in their desperation, they went to a naturopathic doctor. For weeks she had them journal everything the daughter eats, while decreasing the dosage of the medications.

To make a long story short, not to say that the girl was only eating junk but a LOT of processed food and it turned out she had allergies to certain foods and food additives. They changed the diet, she did get some supplements, they had to change some of their cleaning products, etc and now 24 months later, the girl is off all medication, no depression and in fact, NO asthma at all!

Now, I am not saying everyone who has asthma or whose child has asthma is eating/feeding junk. I just can't help but notice that as the healthy eating for us as a society has decreased over the years, certain diseases like asthma, diabetes, high blood pressure, cancer and even depression etc. have increased exponentially. The more sick we get the more drugs are coming on the market to "treat" these conditions, a lot of them causing potentially very serious side effects and making us even more sick.

I think many doctors are quick to prescribe a drug. To give you an example, this weekend I was breaking up a dog fight and got bit. No big deal, just a couple of cuts and scrapes. I cleaned it out and it looked okay, however, I was overdue on my tetanus and went to urgent care to get the shot. The doctor insisted that I HAVE to take a 10-day course of antibiotics as a "precaution". We had a lengthy conversation where I voiced my concern that antibiotics are powerful drugs and I didn't want to take it unless for good reason, a precaution on a couple of scrapes and cuts didn't sound like a compelling reason for me. Boy, did she read me the riot act! I am it doesn't come as a surprise that I didn't fill the prescription and I am still alive :) and without infection.

I am sure I will get flamed for this but I do think that medicine as it is practised today has conditioned us to see doctors as somewhat omniscient. Deep down we know that this is not true, doctors make mistakes, drug companies make mistakes, pharmacists make mistakes and not all drugs help. However, when we or a loved one gets sick we want to trust in an authority figure to tell us what to do.

I do NOT condemn conventional medicine and drugs alltogether, and I think a lot of progress has been made. What I do find disturbing, however, is the overprescription of drugs without addressing the underlying cause. I think modern day medicine and drugs are catering to our culture's take-out-window quickness. I have found a lot of doctors and people to avoid "complementary" medicine or a holistic lifestyle because they are afraid of it because it is different from what everyone else is doing (especially difficult with teenagers as I am struggling with my 12-year-old who doesn't want to take bag lunches anymore and instead eat the not-so-healthy school lunch :-() and they don't know or understand the underlying theory of naturopathic medicine.

I am very aware that "conventional" medicine loves facts and data, everything that can be explained by a chart or double-blind study. However, this disregards the fact that we are a whole organism and not parts patched together, there is no one-size-fits-it-all! One drug may work without any apparent side effects for one person whereas the other person reacts with serious side effects. However, just because there are no obvious or visible side effects in one person doesn't mean that it had no negative effects that may only be found at a later time.

I don't want to tell you what to do, as I am sure you know what is best for your son. I just want to give a different perspective, hopefully it helps, maybe this is not for you.

Just because someone is considering holistic or naturopathic care doesn't mean they need to abandon conventional care or disregard medical advice. In fact, the naturopathic doctors I had were very much intune with modern medicine, they did run blood tests, sent me out for x-rays, mammograms, etc. Much more willing to include the best of both than some conventional doctors that I have encountered in my neck of the woods were willing to consider "alternative" medicine.

A naturopathic or holistic approach doesn't mean we have to trade our common sense for a tambourine. A holistic approach is all about individuals, not one size fits all. There is no singularly "right" way. I hope you will find something that is right for your son. Keep us posted on how he is doing.
 
My son has food allergies and we knew this before the asthma. Neither my self or DH smoke and we are not around anyone who does. When he was little we avoided relatives who did smoke.
My son eats healthier than probably all his friends.

Carola you did some valid points and thank you for responding.
 
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