reacting to everything it seems. llmd wants me to take several things for mcas, but likely can't pull that off.
Thinking of trying ketotifen to start, or maybe quercetin. If I only try one supplement/med which is the most gentle?
She also wants me to try generic compounded allegra.
Posted by Lymetoo (Member # 743) on :
I like cromolyn sodium .. much safer and works very well. It's a prescription.
I am unable to take quercetin.
I do take Zyrtec and Pepcid for the H1 and H2 combo.
Posted by SickSam (Member # 45330) on :
I react to a lot of stuff too, it's hard for me to tolerate a lot of things.
I've started taking Claritin plus Pepcid as an h1 + h2 blocker combo. I was amazed at how much better Pepcid by itself made me feel. Adding Claritin just increased the benefits.
I did have to work up to my doses, but it only took about 3 days to get to a full dose. I still plan on going higher on claritin eventually. Most meds take me weeks to get to full dose. My understanding is the antihistamines are some of the safest meds you can take. I plan on adding cromolyn soon too.
Quercetin didn't do much for me, but maybe my dose was too low, I'm not sure. Studies say it can be very good for MCAS.
Posted by Lymetoo (Member # 743) on :
Sam .. Do realize that Claritin may begin to keep you awake at night. I get rather wired when I take it.
Posted by dogmom2 (Member # 23822) on :
lymetoo, are you taking the cromolyn sodium in the nasal spray, or in a different form?
Posted by shoeless joe (Member # 45835) on :
low histamine diet,quercetn,ester C, and occasional DAO supplement here.
Is there an OTC oral comolyn ?
Posted by Lymetoo (Member # 743) on :
Cromolyn is only by prescription.
You can buy nasalcrom, which may help a tiny bit.
Posted by SickSam (Member # 45330) on :
Yeah Lymetoo, it does make me feel slightly wired, but the insomnia hasn't been too bad yet. Hoping I can stick with it since it's also one of the main things Dr. C is pushing people to try right now.
Posted by dogmom2 (Member # 23822) on :
is Cromolyn available in oral form, not just nasal?
The dao supplement, can you get it without the bromelain, I can't tolerate that.
What does the quercetin do?
Seems like the longer I have lyme, the more syndromes I develop and the more things to figure out. Guess it's similar for many of us.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by dogmom2: is Cromolyn available in oral form, not just nasal?
Yes, as a prescription.
Posted by dogmom2 (Member # 23822) on :
well can't tolerate the fexofenadine(allegra) or ketotifen, tried other antihistamines in the past for gerd, and couldn't do those either.
Anyone taking the dao supplement and having luck with that?
Posted by Lymetoo (Member # 743) on :
You can't do Zyrtec?
I never tried DAO .. most contain Vit C and other sals .. can't do it.
Posted by aklnwlf (Member # 5960) on :
I'm seeing benefits with horse chestnut. I use Now brand 300 mg which I take one pill in the morning and one in the evening.
I tried quite a few herbs. Check out the MCAS thread from Lymetoo in General. Lots of info there.
I can take the zyrtec so thanks for the suggestion. Just trying 1/4 dose to start.
Couldn't tolerate the other 2 compounded meds at all, even at very small amounts. funny that the over the counter drug is tolerable.
Posted by Lymetoo (Member # 743) on :
Most MCAS patients take an H1 and an H2 each day.
H1 .. Allegra, Claritin, Zyrtec
H2 .. Zantac, Pepcid
(not a complete list)
Posted by dogmom2 (Member # 23822) on :
can't do zantac, guess i'll have to try pepsid again, gave me headache years before.
Are you taking singulair too for leukotrienes? Aspirin or advil?
My llmd wants me on a h1 and h2 blocker, ketotifen(can't do),singulair, advil or aspirin, and maybe dao enzyme.
Not likely to tolerate all that, my tinnitus gets louder with each med I take.
Posted by Lymetoo (Member # 743) on :
You may be sensitive to salicylates. They make my ears ring big time.
So .. no aspirin or NSAIDS for me.
Afraid to try Singulair. (side effects)
Can't take DAO due to the ingredients in most of them.
I never could take Zantac. Pepcid is OK now that I'm on cromolyn. I think it makes me retain fluid though. I take it when I feel like I have to.