Hello everyone!  I was wondering if anyone has a problem taking Singulair?  I have not been able to tolerate any corticosteroids as they give me extreme anxiety.  Inhalers don't help my breathing either.  I have not been definitely diagnosed yet with MCAD but am still in the testing process.  I fear taking it because I fear the side effects of Singulair...which are anxiety...something about a cold/flu like symptoms (which I did get  after I used an inhaler in the past--I ended up with a drip in my throat and coughing about an hour after taking it and then it progressed into bronchitis), and it says it is known to cause something called Churgg-Strauss Syndrome, which sounds worse than what I have.  I have problems breathing every day.  I haven't been able to breathe well in about a year and a half (along with other symptoms of mast cell that recently had calmed down like itching and red hot spots on face and feeling like my throat was going to close up on me...but I have learned to avoid many of my triggers) .  I don't see how it could be asthma if it is everyday?  Does anyone know anything about this?  I don't feel like I have heartburn, but a CatScan showed that I have a narrow espophogus which the pulmonologist says is what acid issues do to the esophagus.  I also had an elevated test for farmer's lung (and we live on a farm), but he said he didn't think it was elevated enough to cause breathing issues.  I had elevated prostaglandins and now I am showing a wheat allergy (class 2), although I stay away from wheat anyways and gluten, so that shouldn't be causing my breathing problems because I don't eat it.  The genetic testing for the CKit came out negative.  Does anyone have any ideas about the breathing problems or have similar breathing problems?  Also, I don't have sinus problems at all which is where it seems like I'm kind of different from many people.  I'm clear in the nose and throat...

I do have breathing problems....mainly when I exert myself in any way.  They are worse when my overall symptoms are worse.  I chalk this up to MCAS.  The only sinus involvement I have is my sphenoidal sinuses (behind the eyes/bridge of your nose), which can give me killer headaches.  I started using medication for it when I noticed a distinct wheeze when I inhaled (my throat was constricting enough for me to wheeze), which seemed to be caused by my trial of aspirin for MCAS.  Unfortunately, this didn't seem to improve when I stopped the aspirin.

So, I now use Alvesco (inhaled steroid that is specifically targeted to respiratory tract).  I've had no problems with the Alvesco other than having my sense of taste/smell severely blunted.  

After the trial of aspirin, I tried montelukast (generic Singulair), not so much for my breathing as for general MCAS treatment.  I only managed three or four days on it before I had to stop.  First, I had a tingly/numb mouth and lower face (which I have had since then, so that may have been a coincidence), and second I had difficulty controlling frustration/anger/strong emotions.  Rather than just getting upset at something, I had a meltdown.  A few minutes later my husband looked at me and said, "that just isn't you" and I agreed and that was the end of the monteleukast.  I didn't feel anxiety per se, I just had a hard time keeping my emotional reaction contained.  From what I understand, some people have these reactions...others do great on the drug.

My doctor recently contacted Dr. Afrin about my treatment and discussed this, and he said that the generic montelukast seems to cause WAY more reactions than the brand name Singulair.  She didn't say if this was "allergic" reactions or emotional reactions that he was referring to.

If you were to try it, I would highly recommend ONLY trying the name brand, and starting out with a child's dose (neither my doc nor I thought of this, which we should have).

I started taking Singulair before generics were available in the US.  I didn't notice any difference at all when I switched... there shouldn't be, unless you're sensitive to filler(s).

I started at 10mg/day.  I was skeptical that it would do anything for me since I don't have asthma and "breathing difficulties" was not one of my major complaints.  It took about a month for me to notice any difference, but I was surprised to feel some of my energy returning!  My doctor asked me to increase to 30mg/day and the same thing happened... about a month in, I realized that I could keep up with my kids again  The pediatrician he consulted with said they use as much as 60mg/day to treat kids with severe asthma.

The only side effect I've noticed is vivid dreams... which, IMO, is kind of fun as long as they're not nightmares.  My insurance company won't pay for 30mg/day (even the generic), so I buy the extra 20mg/day from Canada.  TOTALLY worth the cost for me... even if I had to pay every penny out of pocket.

Heather

I first had Singulair for 2 years but since some months I get generic Montelukast without any problems.
I take 30mg in the morning.

Thank you all for your posts...and thank you Deborah for your post which is reassuring to me that you have heard so many good things about it and that you yourself have not had any problems with it.   Does it take a while to get into your system before you start to see changes or do you find it works pretty quickly.  I imagine I would know very soon if I could tolerate it or not.

Hi VTmom,

    I have similar symptoms to you and have been going to the Mayo clinic for the last year.  I just started taking the generic Singulair about  a month ago.  I also get very nervous before taking new meds because I have bad side effects too.  I started with 1/4 of a 10mg pill.  I get really fast heart rates when I am symptomatic or when I start new meds, and the only thing I noticed was about 2 minutes of a pounding heart about 15 minutes after I took it.  I took it the next day with  no problems, and now have been taking 1/2 tab per day.  I can take a whole one, but I feel like the half is helping me with the smell reactions I have (which swell my airway and throat).  I also get random periods of shortness of breath where I feel like I can't get air in (a lot of times it's when I'm eating, but I have terrible issues with food).  I do feel like the montelukast (Singulair) is helping with that.  I also only need to take 1/2 of  a Zyrtec per day and it helps me a lot.  I take a whole Allegra, and the generic Zantac works great for me.  
    I also have a narrowed esophagus, but was diagnosed with Eosinophilic Esophagitis at the Mayo clinic.  I feel like the 2 diseases are related--they both have to do with allergies and the immune system.  They did a swallow study on me and 3 endoscopies in the last year.  I feel like the Zantac helps me the most out of all of my medications.  If I miss it, I notice the throat swelling within a few hours.  **Do you take Zantac or Pepcid?                    
    The only bummer with the Singulair (I'm only guessing here, I'm not sure), is that I actually have a cold right now.  I haven't been sick for almost 3 years with any kind of virus, so that's the only negative so far.
   What I have learned in the last 2 years with this disease is that the only way you will know if something is going to help you, is to TRY it  It is scary when you have reactions to meds, but if the medicine is going to work, it's great to have some relief.  You can always start with 1/4 or 1/2 of a pill.  I have even taken them in an ER parking lot (sounds nuts I know, but makes me feel better).  I either have reactions or I don't.  It doesn't matter if I'm nervous to take something--it will either bother me or it won't.  I hope this helps some and good luck with everything!  --Sarah

Hi Deborah, thank you so much for your earlier post.  Do you know if mostly everyone with mast cell issues take singulair?  When I was prescribed it, I assumed it was because of my breathing problems was the reason why it was prescribed but I didn't realize that it was given to people without the breathing symptoms.  

Hi VTmom,

Sorry it took me a while to get back to you.  I saw my doctor and she said the cold I had was likely due to taking Singulair.  It changes the chemistry of your immune system.  My cold is  gone now though, and I have no lingering symptoms.  If you have tolerated the Pepcid, that's good.  I don't know how often you can take it, but I THINK my GI doctor said I could take 1 tab up to 4 times/day. You'd have to ask your doctor.  I take the 150mg Zantac 3-4 times/day depending on my symptoms, and it definitely helps with the throat swelling, and other symptoms.  I was diagnosed with  Mast Cell Disease by my GI doctor and possible MCAD by the mast cell doctor at Mayo.  I am seeing the other mast cell doctor next Monday, so we'll see how that goes.  My tryptase was 10.7, so on the high end of normal.  Most of my labs were on the high end of normal, so not diagnostic criteria at Mayo.  They are looking at my symptoms.  I hope you are feeling well, and hopefully you can try taking the Pepcid at least twice/day to see if you feel better.    Sarah