Just got prescribed this but haven't bought it yet! Following
I've been taking Ketotifen for about a month now and it has helped me tremendously with my reactions. The only downside is that I'm experiencing pretty severe drowsiness. I take it at night but it carries over into the daytime.
The drowsiness subsided after about 3 weeks for me, and I was able to add the daytime dose. I’ve been on it for about 3 years. It’s one of two mast cell stabilizers, the other being Cromolyn Sodium, oral. This describes the symptoms it helps with:
Thanks hoping my drowsiness will improve
Sheryll do you know if you can take it with cromolyn? Thanks
jayna, some people do take both, but most only need one or the other.
Thank you! I take cromolyn now but just wondered down the line.
The fatigue really does go away
jayna I started Cromolyn first for several years. Then Ketotifen was added, so I take both Cromolyn on an empty stomach 4 times a day with plenty of water and no other medication, and I take Ketotifen 3 times a day.
Frierson increase your water intake to help your kidneys process the drug.
If you have complex regional pain syndrome or with nerve pain it can be amazing. It was one of the three ingredients prescribed in a compounded medication for my naughty bits when I was reacting to toilet paper, Elavil and Neurontin were added to the compound.
Nice to know I'm not alone with reacting to toilet paper! I would basically get burning down there for weeks when using any public restroom toilet paper.
Caboo tp is my best friend
Frierson me too!
Can it help POTS?
Remron is prescribed for dysautinomia sometimes
Thank you, Sha.
It absolutely can
Sha Remeron? Good to know!
Yup, Google search it. It's being prescribed for it. It's a drug to help depression... I think the low serotonin is acted on differently by it somehow differently than traditional SSRI drugs. It's the only one that popped up a number of times at first glance in a seach of academic articles.
Sha I am currently on Remeron at bedtime. I do believe that I have low Serotonin levels. Thank you so much Sha!
Ketotifen has been a total life saver for me. It really helps my reactions and has allowed me to increase the foods that I tolerate.
(for me) Pros: Eating freely again. Life-changing. Cons: False sense of security. It won't block all reactions. My journal is here: http://bit.ly/ketotifen
Only pro’s here. 1/2 frequency and intensity of reactions. It stabilizes mast cells here.
Good news, thanks Zonia
I just started it and am drinking a lot of water because I was drowsy today as well. I am on 1 mg AM and PM working up to 3 mg day and night. Any weight gain?
Weirdly, I've actually lost 25 pounds since I started ketotifin two months ago. It's partly that my body is less inflamed, but also I'm able to tolerate exercise better reaction-wise. I was really nervous about starting ketotifin, because I reacted really really badly to cromolyn. But ketotifin has been good for me in many ways. It really has allowed me to gain a small sense of normalcy, something I've not had since my disease took a down turn a couple years back.
evangeline that is a relief to hear- we will see if I tolerate it or not- was pooped today.
so happy for you evangeline!
Weight gain here at first but then got a hold of it fast and lowered the weight. Eating healthier too and mostly at home.
evangeline I have stared Cromolyn and am having reactions...burning mouth, lips and tongue. Also four vials bring on itching and that electrical shock reaction. Did this happen to you? Thank you.
It really helped my gut when i was having problems. JanMarie is right. Helps tremendously (for me), but won't protest me from every food. Soy and peanut reactions aren't stopped by it, but I can eat much freer!
Is it an antihistamine or stabilizer
Ketotifen is both, but most useful to us as being a stabilizer. It should not replace another H1.
I stopped reacting to uv...
Is ketotifen over the counter in Canada?
I think it requires a prescription. In the states, it’s not FDA approved in the oral form, so it has to be compounded.
Thank you Sheryll!
No it's prescription and generally has to be ordered in. Not commonly prescribed ( surprise!- not!)
The only con is the price if you are in the United States
My doc got my insurance to cover it. I only pay a $10 (brand - higher tier) copay per month.
Do you live in the US
$329 in Canada but I have insurance.
Its over the counter in Japan. I got 200 pills for $56, that includes shipping.
I do. Michigan.
I am trying to get my insurance to pay for Ketotifen, but am currently paying cash for it compounded in my town.
Check compounded pharmacy pricing
Geneva Woods Pharmacy in Anchorage, Alaska compounds it for me. If it's no longer readily available in Canada, check them out. The price has actually come down the past year.
Ketotifen saved my life. I’m able to cut back on meds & took anaphylaxes from an average of every 10 days to about every 3 months.
Only con was the first few doses or when I was going to a higher dose. It can make you loopy & tired at first. That left in about 36 hours, so I just did it when I knew I could be home & sleep it off.
Asti’s Pharmacy in Pittsburgh PA managed to work with my doc and insurance company and got it covered for me.
McFarlane- its good to know that the tiredness goes away
I always had to get ketotifen from UK, etc abs paid dearly. But compounding Pharm got to my Insurance co (Tufts in MA) and now I only pay $30 for 120 capsules of 1mg.
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I order it from Amazon. Its shipped from Europe where it is sold over the counter. Price is great, never had a problem with customs.
salvatore you dont need a script? How do you know how it’s compounded?
No script needed in Europe, Amazon has the shipper in Bulgaria take care of order. Its made by Sopharma, a large generics company. I take one 1mg pill twice a day. Never had any bad reactions, worst part is being tired for about 3 weeks. It has been a real blessing for me, best working antihistamine. YMMV. It does take about four weeks to get order, but it works and is very inexpensive. Search this site for it, there were a lot of postings about a month or so.
salvatore ok thanks my dtr takes 2mg twice a day. Can you provide link I cannot access it on amazon. thank you
You can't miss it, unless you are spelling it wrong. ketotifen
salvatore Doesnt show up - just eye drops. typed in tablets - oral - rtx nothing
Everett Boulevard Pharmacy in Worcester
Charissa thank you. How much? I used american compounding in watertown.
Ketotifen decreased my overall amount of mast cell reactions. I had the dose increased after a year and felt more stable.
Pro: exceptional restful sleep and completed the stabilization I needed to fill in gaps of xolair.
Cons: makes me too sleepy for day time dose. So I just take night time dose.
Oh. And I get it compounded with acidophilus only in clear caps which is a plus. The negative of that is $150 for 180 pills out of pocket. I haven’t yet tried to see if my insurance will reimburse.
Anyone else have United Healthcare get approved for compound pharmacy? My doc said he doesn't think insurance will cover it.
I have a lot more energy!
Ack!!! Amazon quit selling ketotifen. But found it on Ebay, same boxes I got from Europe, same price - about $22.00 for 90 pills.
Thank you everyone for your input!