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Experiences with singulair?

Was just wondering what your experiences have been with singulair? Good, bad, ugly … would love to hear what difference it made in your symptoms and side effects. I trialed it before and didn’t like it … moods were much more labile with vivid dreams/nightmares. I’m re-trialing it again, but the nightmares and fragmented dreams are back. 

I’m keeping my fingers crossed that my new allergist might offer immunotherapy in the future? It was offered in the past, but I worried about the frequency and anaphylaxis risk. Do any of you have experience with sublingual or subcutaneous allergy shots for allergy/asthma combo? Would be nice to retrain the immune system rather than contain symptoms. 

 

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  • dory2005

    Allergy shots: Yep. Started when I was 10 and continued until I was 17 (retested around age 13 and had to start all over again). That worked for the longest time. Allergies were OK until age 30, so I started allergy shots again when I was 31 and stayed on them until I started having severe allergic reactions (it was the cat dander one), and when I was pregnant with my youngest DS, I had to stop because the reactions were getting worse. Fast forward about ten years, and then I tried again with a new allergist, and I did OK for the first six months or so, but then I started developing allergic reactions so they would bump me down to a lower dosage. That was also about the time I started getting really sick–I had bronchitis about 4-5 times that year, and it made it hard for me to stay on the allergy shots (you can't get them if you are sick or wheezing, etc.). That's about the time that I also developed new allergies that didn't show up on the last testing. (I became highly allergic to dogs and would have severe asthma flares that I didn't have just months earlier.) So, I had to end up stopping the allergy shots because my asthma became too severe, and they won't give you shots if you are symptomatic. But I started the Nucala injection shortly after that, and it has been really helpful in controlling my asthma enough to keep me out of the hospital and lowering my pred dosage. For me, the allergy shots helped the most the first time around, but not so much the last few times. But everyone is different, and you might have a completely different experience. It would be worth a try if your asthma is controlled enough to be off prednisone. Steroids, as well as allergy meds, can affect testing. 

  • Emelina

    Thank you dory! It’s so interesting how allergies can change over time. I’m glad the nucala has been working for you. Ah, I didn’t know steroids can affect testing! 

  • Shea

    Em, I know you already know/read this because I had posted my story on the Med Adherance thread–(and most people know my story on here) but I figured Id paste it here since this thread is specifically about Singulair:

    Anytime someone mentions Singulair as a medication, I always give them the warning that I never got: Singulair is being correlated –although causation has not been proven–with Churg-Strauss Syndrome (CSS)– a rare and serioys chronuc allergic disease affecting tge lungs, heart, snall blood vessels and other organs. I myself developed CSS a year after starting Singulair. The doctor in the hospital who recognized my disease after it gave me a heart attack from allergic eosinophils surrounding my heart is a well-respected pulmonologist and he told me he personally believes it is a bad medication. He told me studies are increasingly coming out tying the two together, and that CSS is becoming a less rare disease as a result. I looked online well and found this info although Singulair's defense is that people usually have the disease already but dont know it and are on steroids for symptoms of CSS and also take singulair for symptoms common in CSS, but when they stop or lower the prednisone and remain on singulair the CSS disease shows itself– and they say it is not caused by the singulair. Well I can say that definitely was NOT what occurred in my case and I DO place some blame on the singulair (although I doubt I could prove causation, I believe it to be). Now, I know CSS is marked by high eosinophils (other diseases can be too) but my primary doctor who prescribed me the singulair originally did so as a solution to me asking if there was anything I could do about a cat allergy because my boyfriend at the time had cats who I was severely allergic to and I wanted to be at his house with him but couldnt. He prescribed me singulair. The singulair worked so well for me– I previously could only be around cats for even 10 minutes before wheezing so bad and itchy eyes sneezing mess. The singulair worked I had no visible symptoms– it was like I was not allergic anymore–but at a blood level it was not working, and after a year of taking it and living symptom free with my now-ex and his cats and dog, I think my tissues and organs became infiltrated with these allergic inflammatory blood cells to a point that I started having weird asthma symptoms (which I had previously never had any asthma just allergies). I wasnt on prednisone at that time, nor did I have symptoms of CSS prior to starting singulair so Singulairs excuse doesnt make sense in my case. But as I started having the asthma issues, I started needing inhalers and prednisone tapers. I suspected the cat allergy coming back and the doctor never warned me I had high eosinophils in my CBC bloodwork, nor did he refer me to a specialist. I did end up moving out of that home with the cats and dog after a conversation with him about it  being bad for me to continue living with theem as they could be making my symtoms hapoen or be worse. So I did move into my parents home (who had only obe dog at tge time– because my now-ex chose his pets over me and our infant son. He brought piles of clothing covered in cat and dog dabder into my room even though I told him not to abd that I didnt need those clothes and it caused what I thought to be an asthma attack but foubd out to be a heart attack caused by allergic eosinophils surrounding my heart and choking it.   I learned how severe my allergies had become after the heart attack and diagnosis of CSS as then I had worse reactions to both cats and dogs than ever before. Anyways, I will never take singulair again– I think it doesnt treat a full allergic reaction and a person can get in a bad situation on it like I did and it messes with your system– but I dont know for certain and I am not a doctor– I recommend to others to discuss with doctor never just stop anything without talking to your doctor, and if you do take it to try to keep track of your eosinophil level (in cbcs) and to avoid known allergens while on it– even if symptoms might appear less or gone, AND just to know that it is correlated with CSS so that if you and your doctor know this you can keep your eye out for it. 

  • Pljohns

    I tired singulair on and off for a while-never noticed a difference when I was on it verses off it so I just stopped taking it-no use it taking meds when they aren't making any differences at all.

  • LK

    I have been on the generic Singular, Montelukast, for six plus years.  Was stared on it by my PCP when I was first diagnosed.  I have not had any bad side effects.  Have not tried to see how I do if I stop taking it.  

  • Deborah Bartlett

    I take Montelukast, the generic for Singulair. Been taking it for 2 years now. I have never had any bad side effects from taking it. 

  • Marie E Natzke

    I took montelukast for 5 years. Started having intense itching. Stopped the drug itching went away.

    Been getting allergy shots many years was helping until recently. Not sure if Humira is interfering with my allergy/asthma meds. I see ENT on Saturday.

  • Emelina

    Thank you Shea, Lynn, Lisa, Deborah and Marie. I’ll give my doc a call and make an appointment to talk about my arsenal of meds. For whatever reason, it seems like me and singulair aren’t gonna be buddies. 

  • LK

    Em,  Always good to chat with your doctor!     I like your term "arsenal of meds"  !  Sure fits!    May have to borrow that from time to time!  

  • dory2005

    I take the generic for Accolate, zafirlukast  and have been on it for many, many years (way before DS13 was born, but I can't remember exactly how long). It has been really helpful for me, and I've never had any problems with it, but Shea's right–all the meds that are in this family zafirlukfast and montelukast–have a higher risk of Churg-Strauss syndrome.  

  • Wheezy Me

    I took singulair for one winter for asthma/rhinitis combo. My asthma control wasn't bad, but isn't as good as with symbicort. Singulair didn't help my rhinitis at all. Didn't have any side effects, but stopped it because my previous regimen was more effective.

  • Emelina

    Simple but interesting tip from my pulmo, if you can’t tolerate singulair due to neuropsych side effects like nightmares, try taking it during day

  • Emelina

    Unfortunately it didn’t help with the neuropsych effects, so I ended up stopping singulair. 😞