I'm new here and trying to wade through the list of meds to try.  Diagnosis was challenging enough but it seems like it will take the better part of a year to work through the list of meds I was given to try -really hoping to hit upon something that helps soon as I have been homebound for the past year with POTS and MCAS symptoms that are severe - I desperately need some relief!

Currently I have a choice between a trial of Singulair or Ketotifen.  Wondering which you all would choose?  What has your experience been with these medications?

Here's my current MCAS med list (I'm on other medication, but these are the one's specific to MCAS treatment):
Zyrtec bid
Zantac 150 bid
Quercetin 2500 mg
Slow Release Vitamin C
Alpha Lipoic Acid
NAC
I have also tried Clonazepam and NSAID's with no luck.  

The Singulair and the Ketotifen are the last two "cheap" options before I have to move on to the more expensive meds on my list from the MCAS Dr.  I am also trying to sort out how to get those expensive meds potentially covered by insurance - if anyone has experience with this I would really appreciate a PM. Next on the list to try is Xolair and it appears to be prohibitively expensive if I cannot obtain insurance coverage!

Thanks in advance for your help!

Hi Aimee and welcome!

A couple of other points:

With regards to the H1 antihistimines - I see you take 2 Zyrtec a day.  Many of us find that taking 2 different H1 blockers, vs. 2 of the same blocker, is more helpful.  For instance, I take 1 Allegra in the am and then 1 Zyrtec pm.  Some take Claritin with either Allegra or Zyrtec.  So at some point you might want to try experimenting with this.

As Anaphylaxing indicated, Ketotifen and Singulair do very different things.  Ketotifen is a mast cell stabilizer.  Most mast cell patients are on either Ketotifen or Gastrocrom for this reason.  Although I believe that Quercetin is also supposed to perform this function, I'm less familiar with it.   Singulair targets leukotrienes specifically (rather than general mast cell degranulation) and is more likely to be prescribed for patients with airway problems (it is normally used as an asthma med).  I get a chronic asthma-like cough, and chest-tightening/wheezing from strong scents -- which is why it's on my list of meds.  But as with all these meds, they can have unpredictable results for mast cell patients (good and bad) -- so sometimes you just have to try it for yourself.

I take Gastrocrom rather than Ketotifen, and it took a long time to get the full effect (some months).  I don't know how quickly Ketotifen works, so you might want to get some feedback on that if you're layering and trying to figure out what works and what doesn't.

Also, if you end up needing to move to Gastrocrom, I believe there are several people on the forum who have the powder form compounded for them, and it is much more affordable than the oral solution.  I understand it's a bit tricky mixing it, but worth it given the very high cost of Gastrocrom (if insurance doesn't cover it).  Gastrocrom helped a lot with GI issues.

It's great you were able to get in to see Dr. Afrin.  Everyone talks about how wonderful he is! I hope you're able to get up and around soon.