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Singulair for MCAS

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Posted 3/2/2020 7:05 PM (GMT -5)
My PCP prescribed 10mg of Singulair along with Pepcid to take for MCAS.

The first couple of days on the singulair I noticed that I was feeling a little more clear (started Friday night). Now today (third dose was last night) I have a super bad headache.

It’s not uncommon for me to have a headache but this one is a little extreme. I feel sick too, almost flulike. I could either be getting sick or I am experiencing side effects from the meds..

I then started reading that Sigulair has been linked to causing depression, anger, aggression, suicidal thoughts, etc. which is scary to me.

Does anyone have any experiences or opinions on singulair?
Posted 3/2/2020 10:01 PM (GMT -5)
Sorry no experience at all with the product you are taking.
But I do have MCAS. Quite a few remedies I have taken dont seem to affect me on the first or second day and then I start having an allergy reaction to it. Headaches are pretty common for me as an allergy response.
I would stop taking it and then try again in a few days time and if you get that headache again that product is not for you.
I hope you do find something ... and good luck.
Posted 3/3/2020 9:33 AM (GMT -5)
You could be reacting to one of the ingredients in the Singulair. I would say to try some of the many non-drug options instead, but I know you have been working on this for a while, so maybe you already have. Sometimes an MCAS treatment will cause MCAS symptoms for a while, but they go away after a week or so.

Good luck! I know how frustrating it is when a treatment that's supposed to help makes us feel worse instead.
Posted 3/3/2020 10:08 AM (GMT -5)
I feel slightly better today, but still pretty off..

I am more worried about the psych effects that people are saying it can cause..

Saraeli - What are your recommendations for the non-drug options? I tried D-Hist and it didn't work for me. I also will mention that I don't necessarily know for sure that I have MCAS, it's just an assumption by my PCP.
Posted 3/3/2020 10:47 AM (GMT -5)
Interesting that a PCP even knows about MCAS. Do you have a good sense of what some of your triggers are? If you could minimize those (e.g. mold exposure, an allergy to cats, laundry detergent, hot showers, etc.) that obviously can help.

A low-histamine diet has been hugely helpful for me. Fermented foods, vinegars, most probiotic supplements, very ripe fruit and citrus, and some other things all have high levels of histamine. Just reducing the load that your body is dealing with can help it to handle some necessary histamines, like for example hers you might be taking for treatment. People's triggers with diet can vary as well, for example I seem to tolerate citrus just fine, but a banana with brown speckles slams me with brain fog for hours. For me, diet has made a much bigger difference than anything else. Like night and day in terms of brain fog, especially.

I also take quercetin and curcumin, as well as practicing DNRS (although not as often as I should).

The options include:
quercetin
curcumin
freeze-dried stinging nettles
DAO
cromolyn sodium
ketotifen
antihistamines (OTC)
PPIs (OTC)
DNRS
Posted 3/3/2020 10:56 AM (GMT -5)
My PCP is incredible. She's an NP that works for my hospitals Integrative clinic. She understands and treats Lyme, CIRS, MCAS, and so may other things. I'm blessed to have found her.

I notice that every time I have dark chocolate or Coffee, I feel like crap. It makes me dizzy, fatigued, and lots of brain fog.. are these known to trigger MCAS?

Thanks so much for the non-drug list, I'll keep that in my back pocket!
Posted 3/3/2020 11:28 AM (GMT -5)
Yes! Those things can trigger MCAS. If you buy certified mold-free coffee and chocolate (like from the Bulletproof brand, for example) then it might help.

Your doctor sounds amazing! Great find. smile

A few of things on that list are drugs, but just wanted to throw a list at you in case something jumped out as interesting. A holistic nutritionist also recommended homeopathic histaminum hydrochloricum, but I didn't find it helpful, for me.
Posted 3/3/2020 12:52 PM (GMT -5)
NicHostetler, I had not known that about Singulair. (I've actually started taking it more often recently, I get the generic version Montelukast Sodium)...now I am wary about taking it any longer. Same went for the Hydroxyzine, seems to impair me cognitively, I get foggy. I don't know about all these medicines, but I think the method of action is dirtier than most people realize, like shooting a mouse with an elephant gun, what I mean is the way these drugs act on entire systems of enzymes, processes, so much that our bodies rely on, certain channels, chemical pathways, and acting on H1 receptors, you can look at affinity index and see H2, H1 besides that, I would think it could throw certain things off of baseline. This is why I don't mess with SSRIs and am growing wary of my insomnia meds which are actually old school tricyclic antidepressants.

Anyway, I always thought the "neuropsychiatric manifestations" were par for the course of the Lyme Borreliosis complex anyway, and I understand wanting to avoid anything that might make it worse. On that note, I might shelve the Montelukast Sodium and Hydroxyzine HCL for awhile and stick with the Claritin (Loratadine).

Ask your doc about Loratadine instead maybe?

Anyway, thanks for bringing my attention to Montelukast, now that I think of it, I have a had few days of mood disorder (to put it mildly) and that could be what's caused it, I'll probably stop taking it.
Posted 3/4/2020 9:38 AM (GMT -5)
I don’t want to scare anyone about Singulair if they are taking it with no issues, but since Nic asked, I will share my experience.

When my Lyme symptoms started in 2009, I was undiagnosed and being seen by an allergist who was trying to stabilize me while he and my PCP were trying to figure out what was happening (they never figured it out).

The allergist put me on Singulair, Xyzal, some other antihistamine or two and antibiotics. I felt psychotic at bedtime. The meds made me fall asleep with a thud, which felt like I was dying. I hated taking the meds and felt like crying because I didn’t want to take them, but then I would take them anyway like I was brainwashed and drinking the Kool-aid.

I quit all but Xyzal after 2 weeks and the psychotic feeling went away as soon as I stopped. I told the doctor the Singular made me feel psychotic and I didn’t ever want to take it again.

While I do believe the Singulair had some weird effects on me, I don’t think it was all due to the Singulair. That was in 2009. I had some weird psychotic feelings again in 2015 that I thought was from Metamucil. A year or so later, had it again while not taking anything. Only then did I realize it was a symptom of the yet undiagnosed mystery illness.
Posted 7/3/2020 11:03 AM (GMT -5)
Hello. Sorry for the late comment, just researching about MCAS. Is this a condition that ever improves? I have a patient I had start taking cromyln. I was able to come down on the dose, but she is still having to take it. She does not have insurance and it is a little expensive. I also am not a lymes specialist, just trying to help her since she doesn't have insurance. But, She now is feeling like itchiness under her skin and tired all the time despite the amount of sleep she gets. Is this normal or will this ever improve? I am trying to get her to keep a log. Make a list of potential triggers and eliminate them. She used to have horrible hive breakouts but those stopped with the cromyln. I just feel like I am suppressing it and not addressing the issue. Any help is appreciated!
Posted 7/3/2020 11:14 AM (GMT -5)
Joy,

It has improved for me. A lot of it has to with toxins. Mold triggered mine, and it improved some with mold avoidance, antifungals, Xyzal, and some supplements like AllerDHQ and NeuroProtek. The thing that worked the best for me was TUDCA Plus. It stopped the burning and numbness.
Posted 7/3/2020 11:25 AM (GMT -5)
Nic I never took the singular. My thought was that it was too much of a gamble because my symptoms were psych in the first place. I did take the Hydroxzine and pecid it just made me tired and acted as a sedative. Will MCAS stabilize on its own or as pathogen load decreases.
Posted 7/3/2020 12:12 PM (GMT -5)

Woodduck12 said...
Will MCAS stabilize on its own or as pathogen load decreases.

Theoretically it should. I think it’s best to proactively treat MCAS simultaneously with treatment for infections, as it reduces inflammatory reactions and gives the body a better environment in which to subdue infections and restore proper functioning. I know the tendency for many people including myself is to take the least amount of treatments for the shortest time possible, but with a highly inflammatory and disruptive illness like Lyme/co, that approach can likely be counterproductive and prolong treatment time as well as prolong an inflammatory state in the body. I am an example of what not to do.
Posted 7/5/2020 11:00 AM (GMT -5)
No side affects or issues with Singulair at all.
Posted 7/5/2020 1:18 PM (GMT -5)
I don’t have MCAS but my LLMD put me on OTC Zyrtec as an H1 anti-histamine. No side effects whatsoever and I believe it has much less interactions than Allegra (believe it interacts with fruit juices, etc).
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