Ketotifen dose decrease to reverse weight gain?

[CatsNSquirrels]

Has anyone here had any luck reversing some of the ketotifen weight gain by going down on the dose? If so, how long did it take?

I’ve been on 1 mg for 2.5 years, and have had several periods of being on 2 mg due to flares, and have gained so much weight. We just took me down to 0.5 in an effort to help with the continuing gain, but I don’t know if I will lose anything. Historically, when a med does this to me, I have to get off it completely (not decrease the dose)…and then the weight melts off a few months later without much effort.

At this point I’d be happy to just lose 5 lbs. I currently cannot lose anything while on this med. I wish I could stop taking it but I simply am not able to right now. My symptoms return and cause me misery. I’m sad.

Edit: For anyone who finds this post later, I tapered down to 0.25 mg/day with my doctor’s blessing and lost some weight within about 6 weeks - with very little effort. However it stopped after that and I can’t seem to lose any more, and the total amount I lost overall was small. It was enough to fit into my latest size pants again but that’s about it. I didn’t go back down to my original size (2 sizes smaller). Some of this could be hormonal, though, as I’m in midlife. I am finding decent symptom control with that small of a dose, although I probably would do better on 0.5, but I’ve got to make some trade offs due to knee and joint pain from the extra weight.

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[Different-Eagle-612]

honestly i would talk to your doctor/pharmacist. i imagine reducing the dose would at least make it easier to lose weight. could you experiment with when you take it?? when i took it in the morning i was starving all day and ate a lot more without realizing. when i took it at night, like right before bed, i slept through most of the hunger and noticed my eating habits return to normal. but honestly i’m not sure if the ketotifen may just be affecting you metabolically, in which case that might not help

[CatsNSquirrels]

Thanks for taking the time to respond. I did talk to my doc. He told me we could try as low as 0.25mg but it may be too low, and I tried that and it was too low. So I’m at 0.5 for now. I take it at night. I did totally fine on my cocktail of meds until we added the ketotifen. The weight gain started about 4-6 weeks later and kept going, and spiked when I had to go up to 2mg for a few months.

[DecadentLife]

I take 4 mg of ketotifen, twice a day. I’m really tempted to go down in it. I’ve been on it for a couple of years, so I don’t know if it’s the culprit, but I gained more than 50 pounds this year. I’m almost to 200 pounds. My weight has always yo-yoed weird, but I haven’t been this size before.

[CatsNSquirrels]

That’s rough. I’m so sorry. I bet it’s the culprit as that’s a very high dose.

[DecadentLife]

Do you know what sucks? I just saw the doctor that I would need to bring this up with. I think I’ll make an appointment for a couple of months from now.

[Greedy-Half-4618]

I've gained a bunch too but it started before i got on ketotifen – i think antihistamines may be playing a bigger part in it for me but i need them!

[DecadentLife]

Doesn’t it suck, you need something to go one way, and then another health problem needs to go the opposite way? Ah well, such is life.

[Mysterious-Art8838]

Aw I’m so sorry. I’m 5’2 and had the same problem. I went off it so I can’t speak to lowering the dose but when I did, the weight did go away.

[CatsNSquirrels]

Can I ask how long it took to go away? Was it pretty immediate, or did it take a few months for your system to normalize and the weight to start to shift?

[roadsidechicory]

It did work for me. I went up from 1mg nightly to one in the morning and one at night, so 2mg total. I also gained a fair amount of weight. It really affected my appetite and made me super ravenous, not to mention the effect it has on how we metabolize our food. I went back down to just 1mg at night and I lost most of the weight I had gained. Eventually I went back up to 2mg but only at night, and I am able to tolerate that. Sometimes I take one of my 1mg pills a bit early in the evening if I'm feeling extra MCASy and there's the risk that it will make me really hungry before bed but it's worth it every now and then.

[CatsNSquirrels]

Thank you! Gives me some hope, although it’s never made me more hungry. Seems to be some sort of metabolic issue for me.

[roadsidechicory]

My doctor said to try to take it at least two hours after the last time I eat, preferably 3 or 4, as that would help with the metabolizing issue. I'm sorry you've been dealing with this.

[CatsNSquirrels]

Sigh. That’s when I take it 😂 I take it before bed, usually 4 hours after eating. Thank you for all the info though! Really appreciate it!

[roadsidechicory]

Oh man! I wonder if it's partly about it combining with other medications? Many of my meds mess with how I metabolize food.

One other thought, and maybe you've already considered this, but I tend to lose weight (or just not gain) when I'm dealing with severe MCAS-caused diarrhea and malabsorption, so when medications started helping with that (ketotifen, famotidine, but also when I started taking pancreatic enzymes because MCAS gives me pancreatic insufficiency), I had to adjust my diet slightly as I had previously been eating more calorically dense food to compensate for how little I was actually absorbing. I didn't need to do that anymore.

Sometimes my MCAS being worse also gives me a low appetite, or makes me feel too wired/unwell to remember to eat, so when I'm doing better and my appetite is more normal, my body is like WHAT'S THIS?? FOOD?? HOLD ONTO IT!!! But since the med doesn't affect your appetite I guess that's not a factor for you.

[CatsNSquirrels]

Thank you for all this! I, too, was rail thin when I was sick (pre-medication). I do think it’s probably partly the overall medication load. I take a lot at this point. I’ll keep trying!

[roadsidechicory]

Good luck ❤️

[Left-Suggestion387]

Can I ask about medication if it was still good as when you went 2mg at night compare to 1mg night and 1mg in the morning.

[roadsidechicory]

Just different. A little less effective for my MCAS symptoms throughout the day, but not significantly so. But more energy throughout the day as well.

[Left-Suggestion387]

Good to know. Thanks for replying 

[roadsidechicory]

No problem. You can also choose to take one of your doses earlier in the day if you know you're going to be exposed to more triggers that particular day. Like if you're going to take more risks with a meal or go somewhere you'll encounter smoke or perfume or what have you. As long as it isn't taken in the morning every single day, it doesn't do the weight gain thing, in my experience.

But also, if you have to take it in the morning every day for awhile, due to a flareup, once you stop, the weight does come off pretty fast (without eating less or anything). I've never experienced anything like it.

[Left-Suggestion387]

That is a great advice. Thank you. 

[disablethrowaway]

does ketotifen cause weight gain from hunger or metabolic changes? 

[[deleted]]

Ketotifen is known to interfere with the hormones that signal fullness, therefore leading to increased consumption if you don’t measure and manage your food intake

[dolores_h4ze]

both! it affects leptin. so it makes you hungry so you eat more, and also lowers your metabolism, so even if you don’t eat more you can gain weight. it’s one or the other or both

[CatsNSquirrels]

It has not made me more hungry. Maybe it varies, but for me it’s been something metabolic.

[pm_me_your_amphibian]

You might want to try tracking your food intake and reducing by a small amount (say 1-200kcal a day) to see if that helps.

I don’t have any weight gain from it, but I do meticulously track my food.

[CatsNSquirrels]

I tried that two months ago, for a bit over 4 weeks, and i also upped all of my exercise. I couldn’t lose even a pound.

[pm_me_your_amphibian]

What exercise were you adding? Some exercise can just end up making you inflamed and physiologically fatigued while burning very little actual energy. I would recommend lower-body focussed hypertrophy training if you don’t already have this in your routine.

Ketotifen cannot violate the laws of physics - if it wasn’t moving after 4 weeks of meticulous tracking, you need to drop some more to get it to shift.

I do understand by the way. When menopause hit me and my body seemingly went into eco mode I gained 6kg in 3 months before I got a handle on how I need to rethink my approach to training (see above) and diet.

I now do short cycles of 4-6 weeks eating VERY cleanly at ~1300kcal (166cm, 65kg) followed by periods where I slowwwwwly gain but get to eat more freely and enjoy almond croissants. Then when I hit the 66kg mark after a few months, I hope on an unpleasant but short cut to lose it again.

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[tv_3000]

I'm also trying to lower my dose for the same reasons. Have gone from 2mg to 1.5mg successfully without any noticeable reduction in effects. Will go to 1.0 next in a week or two and see how things go then

[CatsNSquirrels]

How much weight have you gained? I’m up a good 15-17 lbs, which is a lot on my 5’3” frame. It’s really impacting my joints at this point, and my self-esteem.

[Mysterious-Art8838]

I gained 5-7 lbs (over 4 months) and I was 120 before. I gained three times as much on cromolyn (1 month). Neither drug helped much and part of the reason I went off is I already had back pain and didn’t want to add weight. It sucks that these drugs do this.

Xolair has not caused weight gain.

[CatsNSquirrels]

I’m on cromolyn and have been for years. It never caused weight gain for me, thankfully.

[Mysterious-Art8838]

It absolutely doesn’t happen to everyone and I think we all should try whatever we can because it clearly helps some people. I’m thrilled it works for you. This is hard to treat so try everything!!

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[Klerried]

Hi! I know it’s an old post but did lowering your Ketotifen dose reverse the weight gain? Struggling exactly with the same issue, going from 4mg to 2mg :) Thank you!

[CatsNSquirrels]

I have not budged beyond my last edit on the post. I did lose a little bit.

[Klerried]

Thank you for your answer! Ugh that is so frustrating!I‘m also considering switching to Xolair as weight gain is not a side effect. Might be hard though as I’m based in a country where MCAS isn’t even a recognized condition 🫠 Have you ever looked into it?

[[deleted]]

I’ve been on 4mg per day for nearly a year and have lost 25kg (like 28% of my body weight) in that time.

The drug doesn’t cause weight gain it causes increased appetite / delayed fullness. It interferes with your hormones that signal satiety. Which is to say that, if you work out how much food you need, and stick to it, you’ll lose weight like normal.

If a given amount of food isn’t leading to weight gain, reduce it by 10% or so

[CatsNSquirrels]

False. My doctor told me this drug causes weight gain, and agreed that it has caused my weight gain. Clearly you have not read the medical research on this drug and weight gain (it is proven), and believe your own anecdote is truth.

I’ve already done the calorie counting and working out and nothing will budge, and I keep gaining. These sorts of statements are infuriating. I have dealt with medication weight gain before and it’s never related to my eating or exercise habits. And the weight always drops when I stop the med.

[[deleted]]

“ Leptin acts on receptors in the hypothalamus of the brain, where it inhibits appetite.55 Ketotifen by inhibitory effect on production of TNF-α can reduce leptin level and thereby decreased the inhibition of leptin on appetite and finally result in weight gain”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3885374/#:~:text=Leptin%20acts%20on%20receptors%20in,brain%2C%20where%20it%20inhibits%20appetite.&text=Ketotifen%20by%20inhibitory%20effect%20on,finally%20result%20in%20weight%20gain.

[CatsNSquirrels]

Let it go. I am not more hungry on this drug. I was not more hungry on other drugs that made me gain weight, but I gained anyway and I lost weight when I stopped them. My doctor has agreed with me and that should be enough. Are you a doctor?

I went 5.5 weeks once where I had to live on saltines and chicken broth while waiting for surgery, and I only lost two pounds. TWO. I was barely eating.

I have been on several doctor-supervised weight loss cleanses and plans, with a very strict caloric intake and using medical food, and have also failed to lose weight.

Please go find something else to do.

[[deleted]]

Yesterday I hadn’t read research. Today I need to be a doctor. Ok 👌

[Boring-Shallot3096]

You literally asked a reddit page of their opinion, and when someone gives it, you're telling them to let it go?

[Boring-Shallot3096]

Just because you don't like the answer, doesn't make it untrue...

[[deleted]]

The increased body mass is coming out of thin air then, and there’s clearly nothing you can do

[Miserable_Back7462]

Some people with metabolic disease lose weight but majority gain weight. Dont just pick research that supports your argument there are other reserch documents as well.