What are the pros and cons to ketotifin?

69 Answers

bunnhurtful
Answered 1 year ago    reply

Just got prescribed this but haven't bought it yet! Following


frierson89
Answered 1 year ago    reply

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.

hsheryll
Answered 1 year ago    reply

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:
https://tmsforacure.org/treatments-2/medications-treat-mast-cell-disorders/

frierson89
Answered 1 year ago    reply

Thanks hoping my drowsiness will improve

jayna.97
Answered 1 year ago    reply

Sheryll do you know if you can take it with cromolyn? Thanks

hsheryll
Answered 1 year ago    reply

jayna, some people do take both, but most only need one or the other.

jayna.97
Answered 1 year ago    reply

Thank you! I take cromolyn now but just wondered down the line.

hildred.anson
Answered 1 year ago    reply

The fatigue really does go away

cpatrice83
Answered 1 year ago    reply

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.

unable
Answered 1 year ago    reply

Frierson increase your water intake to help your kidneys process the drug.


ultra.jackrabbit
Answered 1 year ago    reply

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.

frierson89
Answered 1 year ago    reply

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.

ultra.jackrabbit
Answered 1 year ago    reply

Caboo tp is my best friend

cpatrice83
Answered 1 year ago    reply

Frierson me too!


cobregon66
Answered 1 year ago    reply

Can it help POTS?

ultra.jackrabbit
Answered 1 year ago    reply

Remron is prescribed for dysautinomia sometimes

cobregon66
Answered 1 year ago    reply

Thank you, Sha.

hildred.anson
Answered 1 year ago    reply

It absolutely can

cpatrice83
Answered 1 year ago    reply

Sha Remeron? Good to know!

ultra.jackrabbit
Answered 1 year ago    reply

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.

cpatrice83
Answered 1 year ago    reply

Sha I am currently on Remeron at bedtime. I do believe that I have low Serotonin levels. Thank you so much Sha!


savannah_enthralled
Answered 1 year ago    reply

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.


kirkham.daphne94
Answered 1 year ago    reply

(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


shaunnal
Answered 1 year ago    reply

Only pro’s here. 1/2 frequency and intensity of reactions. It stabilizes mast cells here.

unable
Answered 1 year ago    reply

Good news, thanks Zonia


unable
Answered 1 year ago    reply

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?

blaylock77
Answered 1 year ago    reply

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.

unable
Answered 1 year ago    reply

evangeline that is a relief to hear- we will see if I tolerate it or not- was pooped today.

jayna.97
Answered 1 year ago    reply

so happy for you evangeline!

cpatrice83
Answered 1 year ago    reply

Weight gain here at first but then got a hold of it fast and lowered the weight. Eating healthier too and mostly at home.

8q.par
Answered 4 months ago    reply

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.


g_ceja78
Answered 1 year ago    reply

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!


faulty_elephant
Answered 1 year ago    reply

Is it an antihistamine or stabilizer

hsheryll
Answered 1 year ago    reply

Ketotifen is both, but most useful to us as being a stabilizer. It should not replace another H1.


pastel_striker
Answered 1 year ago    reply

I stopped reacting to uv...


bassett_sarcastic
Answered 1 year ago    reply

Is ketotifen over the counter in Canada?

hsheryll
Answered 1 year ago    reply

I think it requires a prescription. In the states, it’s not FDA approved in the oral form, so it has to be compounded.

bassett_sarcastic
Answered 1 year ago    reply

Thank you Sheryll!

unable
Answered 1 year ago    reply

No it's prescription and generally has to be ordered in. Not commonly prescribed ( surprise!- not!)


hildred.anson
Answered 1 year ago    reply

The only con is the price if you are in the United States

hsheryll
Answered 1 year ago    reply

My doc got my insurance to cover it. I only pay a $10 (brand - higher tier) copay per month.

hildred.anson
Answered 1 year ago    reply

Holy crap!

hildred.anson
Answered 1 year ago    reply

Do you live in the US

unable
Answered 1 year ago    reply

$329 in Canada but I have insurance.

chambleesuperior
Answered 1 year ago    reply

Its over the counter in Japan. I got 200 pills for $56, that includes shipping.

hsheryll
Answered 1 year ago    reply

I do. Michigan.

cpatrice83
Answered 1 year ago    reply

I am trying to get my insurance to pay for Ketotifen, but am currently paying cash for it compounded in my town.


bernardine_trahan
Answered 1 year ago    reply

Check compounded pharmacy pricing


g_ceja78
Answered 1 year ago    reply

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.


mcfarlane
Answered 1 year ago    reply

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.

unable
Answered 1 year ago    reply

McFarlane- its good to know that the tiredness goes away


charissa98
Answered 1 year ago    reply

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.

everett
Answered 1 year ago

This comment is awaiting moderation

panicky.salvatore
Answered 1 year ago    reply

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.

everett
Answered 1 year ago    reply

salvatore you dont need a script? How do you know how it’s compounded?

panicky.salvatore
Answered 1 year ago    reply

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.

everett
Answered 1 year ago    reply

salvatore ok thanks my dtr takes 2mg twice a day. Can you provide link I cannot access it on amazon. thank you

panicky.salvatore
Answered 1 year ago    reply

You can't miss it, unless you are spelling it wrong. ketotifen

everett
Answered 1 year ago    reply

salvatore Doesnt show up - just eye drops. typed in tablets - oral - rtx nothing

charissa98
Answered 1 year ago    reply

Everett Boulevard Pharmacy in Worcester

everett
Answered 1 year ago    reply

Charissa thank you. How much? I used american compounding in watertown.


cpatrice83
Answered 1 year ago    reply

Ketotifen decreased my overall amount of mast cell reactions. I had the dose increased after a year and felt more stable.


modette72
Answered 1 year ago    reply

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.

modette72
Answered 1 year ago    reply

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.


bassett_sarcastic
Answered 1 year ago    reply

Anyone else have United Healthcare get approved for compound pharmacy? My doc said he doesn't think insurance will cover it.


samson.donella78
Answered 1 year ago    reply

I have a lot more energy!


panicky.salvatore
Answered 1 year ago    reply

Ack!!! Amazon quit selling ketotifen. But found it on Ebay, same boxes I got from Europe, same price - about $22.00 for 90 pills.


unable
Answered 1 year ago    reply

Thank you everyone for your input!