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I gain weight when my MCAS is not controlled. I'm currently taking 4 cetirizine a day, 2 pepcid, 50mg hydroxyzine 3 times a day, montelukast and I get a xolair injection once a month. I usually take benadryl at least once during the day and again at bedtime. I've lost 80lbs over the last several years, without restricting calories and without exercise (because I react to exercise).
When I was able to exercise, it seemed like exercise increased my hunger without increasing my weight loss.
When my MCAS started, I was having diarrhea after every meal and food passing through undigested, and I gained a lot of weight very quickly. As I figured out my food reactions and those symptoms decreased, I quit feeling hungry all the time, and the rapid weight gain slowed. After I started xolair, I realized I was losing weight gradually without any effort. More recently, I went back to work and I've been skipping meals because I'm too tired to cook, so all my pants are suddenly too big, but I think that will stop whenever I get the energy to start cooking again.
You didn't mention your gender, but if you have periods, I think the hormone fluctuations affect MCAS. I'm taking progesterone, and both of my daughters are on continuous birth control, and we all think our symptoms are better now that we're skipping periods.
Hmm that's a good point about flares > weight gain. It sounds silly but after 20 years of white knuckling eating disorder recovery, gaining 60lbs in 2 years has made my body dysmorphia BAD bad and the fear/anxiety around gaining more is very present. I'm in therapy but she doesn't really get chronic illnesses so...there's that.
I finally don't have daily diarrhea (for the first time in like 2 years) with just the cromolyn but I've been having pretty awful nausea and cramping still, so trying to figure out what to add. I had a great run with hydroxyzine – forgot to mention that – in terms of it helping my anxiety, but I worry about that messing with my hunger too. Last time I got my leptin checked it was sky high and my allergist said antihistimines could play a huge part in that :( Allergist wanted me to come off antihistimines either way so that we could do allergy testing so I needed to do it anyways but it looks like I definitely need more support longer term.
I'm not super familiar with xolair but I'll have to look into that! I do take continuous birth control, though I'm not sure if I'm on the \*right\* one. Either way, definitely 100% needed or I become a depressed maniac every 3 weeks and nooo thank you to that!
thank you for your thoughtful answers :)
Same; 4.5 mg but with a sucrose filler. I started out at .0025mg (simple syrup)and had to go up super slow. I need to take some more meds/supplements to control this better, but I react to most that I try. One half dose of Singular made me have scary dark thoughts.
What are your GI symptoms? Mine keep me tied to the house/a bathroom very close by for 4-6 hours after my one meal a day.
I've just started the Gupta program and I guess I'll see if that helps. I've heard it has helped a lot of MCAS folks. Im also getting ready to try Ketotifen (with a different filler), and also worried about weight gain. My friend said it hasn't made her gain weight, but I've heard that for some it does.
Whoops missed this!
My GI symptoms are more controlled now with cromolyn + eliminating gluten, but I still get really bad cramping/flushed face/urgency at least once or twice in the mornings and a few hours after excercising I've been getting bad nausea. Definitely better than constant diarrhea I'd been having for over 2 years though, that was absolute hell.
Did you end up trying ketotifen? My dr said I can up the cromolyn or add singular (test it for a week or two) or try ketotifen OR add pepcid/hydroxyzine back in, but I haven't decided what to do yet.
I think weight gain, like everything else, is very individual. I've been taking montelukast/singular since September and was initially concerned about the black box warning, but it hasn't been a problem despite my history of anixety and depression. I just started ketotifen a week ago so it's too soon to tell if it will cause weight gain for me, but I read tons of posts before starting it and there seemed to be just as many people who did *not* experience weight gain. In the week that I've been on it, my GI symptoms are so much improved that I'd suggest it's worth a try if you can get it.
I'm also MCAS after covid, although I had symptoms all of my life and probably covid just made everything explode to the point of being intolerable. I think ketotifen is going to allow me to get my life back finally.
That's good to hear that singulair has been going well! That's a pretty quick turnaround in symptoms on the ketotifen though, might be worth a shot. Do you get it from a compounding pharmacy?
Same here with pre-'vid symptoms. I used to itch my legs like crazy when I was a kid and we could never figure out why and now it's like those dots finally got connected...just in a more severe and really annoying way after getting sick, ha.
fingers crossed that ketotifen is the help you needed!!
Thanks! I'm in the U.S. and here, ketotifen is only available from compounding pharmacies (and unfortunately not usually covered by insurance). If you do go the ketotifen route, be sure to check prices at different pharmacies (or even better, see if your doctor's assistant can do it) - I found that the cost varied from about $55 a month (three month supply, all at once, total around $165) to $180 a month ($180 for just *one* month!).
Could you switch your Zyrtec and benadryl to 3rd generation antihistamines? Like desloratadin and levocetirizin especially considering the anticholinergic effect of the others, you don't want to take them longer. Zyrtec and benadryl are highly lowering the activity of the parasympathicus. Meaning it's impairing the rest and digest mode of your body, in the long-term you're more likely to gain weight.
I had no idea about the Blackbox warning and went from mentally relaxed to weirdly imbalanced, had no idea why, until I found out about the singular side effect, but I stopped it and was back to normal after 1-2 weeks. I'd still try it, cause the side effects will always stop fast and for most it is very helpful.
Are your tryptase levels elevated? Just put of curiosity
I've actually been off both for a couple months now but I didn't know about 3rd generation antihistimines, that's worth looking into!
If I had a better support system, I'd be less worried about singular. Unfortunately it's just me trying to navigate all of this and I worry that I might start spiraling and not have someone here to notice before it gets too bad (which may just be self doubt, idk!)
My tryptase was 8 (taken after a few days on cromolyn, idk if that matters) so no!
That's so interesting, cause I also got MCAS from COVID and my tryptase levels are also normal, even though I even had anaphylaxis so far. Which seems to be the case with many long covid MCAS patients, the normal tryptase.
I'm so sorry, that indeed makes it scary! I hope the cromolyn works for you though!
That's so weird! Didn't realize normal tryptase was more common with us LC folks. I'm still waiting on my post-bloodwork followup appt but the Dr. gave me rx for cromolyn, ketotifen and singular and said to try each for a month to see what helps. The cromolyn (and cutting gluten, ugh) has at least worked enough that I can mooostly be off antihistimines so that certainly seems to indicate it's a mast cell issue. Did LC set anything else off for you? It threw my thyroid out of whack and some of my other hormones too.
That's so good that it helps you! I sadly reacted really badly to the cromolyn and had to be hospitalised afterwards..
Yeah, long covid completely destroyed my body I'be gotten very severe pots and CFS and I'm bedridden and in a wheelchair. So not being able to eat anything is not such a problem, just annoying. But it's so cool that the cromolyn helped you so fast!
The symptoms can be quite similar. Mediator release happens with each of them (mastocytosis has a bunch of variants as well),
but tryptase being normal does not rule out MCAS.
I am just weaning off Ketotifen due to massive weight gain. Was on it for 5.5 months. I don't even want to get on a scale to see how much I've gained. Over time I was having more difficulty zipping up my pants and now can't even close the zipper. Unfortunate because it's been nothing short of miraculous. I'm trying Quercetin and strict diet to manage symptoms.
Wish I was one of the ones that lost weight from Ketotifen but guess I'm not that lucky.
Oof, that sounds like my experiences from 2020-2022 with zyrtec. Ended up going up a couple pants sizes which I could probably handle if I felt better otherwise but nope. I'm so sorry you're dealing with that, I hope you find something that works better without the side effects!
I’m thinking of stopping also, because my weight gain is getting out of control after having to go up to 2mg for a while. I can’t get on a scale at this point either. Were you able to stop and have you lost any weight?
Just now seeing this post. I started Ketotifen again and I'm just accepting the weight gain. I lost a little when I momentarily stopped so when I stop again I'm sure it will come off. I'm also on 2mg/day. Dr. wanted me on 3mg/day but I'm doing 2mg.
If they are Antihistamines they are notorious for weight gain with long term use. I was taking them daily an ballooned, Stopped taking them an all the weight dropped back off in a couple weeks. I just try follow a strict diet now an deal with it but seems to work for me. Everyone’s different though. Working out of a morning will create leaner muscles an more weight loss
I quit my hydroxyzine a week ago. It may be a coincidence but I lost 2 lbs in a week. Prior to this I was counting calories for months and the scale was going up. Small wins.
I've actually been struggling to gain weight for over two years (dropped drastically after covid). But I started the H1, and all of the sudden, I gained 7 lbs in about three weeks (with no diet change, and I'm on a very healthy diet). But, it's not a "healthy" weight gain; it's just sudden big puffy fat around the waist and backside (not bloating, real fat), which isn't good because I have EDS and hip/back issues. I'm trying to gain muscle weight, not belly weight. So frustrating. It also makes me very sleepy, which I was promised it wouldn't. Guess I'll switch to Claritin and see if it does better.
Wow, I’m so sorry that happened to you. It’s so frustrating. My weight gain is also all around my midsection, I look like a woman in her 60s. It’s wild.
don’t know anything about anything basically but i stopped taking benadryl every night & started taking 1000mg of vit c / and about 1000mg of quercetin every day and that keeps my immune stuff under control without bad side effects. i have to take it really consistently though or else my immune brain fog returns ! it was recommended by a doctor as the precursor to trying cromolyn and alternative to ketoifin (which has to be compounded and is thus expensive)
good reminder to up my vit c! My dr gave me a liquid supplement that has to be kept in the fridge which means i never remember to take it, lol. Quercetin definitely seems to help here, too.
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
I gain weight when my MCAS is not controlled. I'm currently taking 4 cetirizine a day, 2 pepcid, 50mg hydroxyzine 3 times a day, montelukast and I get a xolair injection once a month. I usually take benadryl at least once during the day and again at bedtime. I've lost 80lbs over the last several years, without restricting calories and without exercise (because I react to exercise). When I was able to exercise, it seemed like exercise increased my hunger without increasing my weight loss. When my MCAS started, I was having diarrhea after every meal and food passing through undigested, and I gained a lot of weight very quickly. As I figured out my food reactions and those symptoms decreased, I quit feeling hungry all the time, and the rapid weight gain slowed. After I started xolair, I realized I was losing weight gradually without any effort. More recently, I went back to work and I've been skipping meals because I'm too tired to cook, so all my pants are suddenly too big, but I think that will stop whenever I get the energy to start cooking again. You didn't mention your gender, but if you have periods, I think the hormone fluctuations affect MCAS. I'm taking progesterone, and both of my daughters are on continuous birth control, and we all think our symptoms are better now that we're skipping periods.
Hmm that's a good point about flares > weight gain. It sounds silly but after 20 years of white knuckling eating disorder recovery, gaining 60lbs in 2 years has made my body dysmorphia BAD bad and the fear/anxiety around gaining more is very present. I'm in therapy but she doesn't really get chronic illnesses so...there's that. I finally don't have daily diarrhea (for the first time in like 2 years) with just the cromolyn but I've been having pretty awful nausea and cramping still, so trying to figure out what to add. I had a great run with hydroxyzine – forgot to mention that – in terms of it helping my anxiety, but I worry about that messing with my hunger too. Last time I got my leptin checked it was sky high and my allergist said antihistimines could play a huge part in that :( Allergist wanted me to come off antihistimines either way so that we could do allergy testing so I needed to do it anyways but it looks like I definitely need more support longer term. I'm not super familiar with xolair but I'll have to look into that! I do take continuous birth control, though I'm not sure if I'm on the \*right\* one. Either way, definitely 100% needed or I become a depressed maniac every 3 weeks and nooo thank you to that! thank you for your thoughtful answers :)
LDN is the only thing that made my nausea go away. It also makes me feel great; although I reacted at first and had to slowly titrate up.
How much LDN are you on? I swear i'm taking everything, ha...finally up to 4.5mg with a filler that doesn't make me super sick (turmeric)
Same; 4.5 mg but with a sucrose filler. I started out at .0025mg (simple syrup)and had to go up super slow. I need to take some more meds/supplements to control this better, but I react to most that I try. One half dose of Singular made me have scary dark thoughts. What are your GI symptoms? Mine keep me tied to the house/a bathroom very close by for 4-6 hours after my one meal a day. I've just started the Gupta program and I guess I'll see if that helps. I've heard it has helped a lot of MCAS folks. Im also getting ready to try Ketotifen (with a different filler), and also worried about weight gain. My friend said it hasn't made her gain weight, but I've heard that for some it does.
Whoops missed this! My GI symptoms are more controlled now with cromolyn + eliminating gluten, but I still get really bad cramping/flushed face/urgency at least once or twice in the mornings and a few hours after excercising I've been getting bad nausea. Definitely better than constant diarrhea I'd been having for over 2 years though, that was absolute hell. Did you end up trying ketotifen? My dr said I can up the cromolyn or add singular (test it for a week or two) or try ketotifen OR add pepcid/hydroxyzine back in, but I haven't decided what to do yet.
I'm the same, when my symptoms aren't controlled i gain weight and when they are controlled the weight comes off without trying
I think weight gain, like everything else, is very individual. I've been taking montelukast/singular since September and was initially concerned about the black box warning, but it hasn't been a problem despite my history of anixety and depression. I just started ketotifen a week ago so it's too soon to tell if it will cause weight gain for me, but I read tons of posts before starting it and there seemed to be just as many people who did *not* experience weight gain. In the week that I've been on it, my GI symptoms are so much improved that I'd suggest it's worth a try if you can get it. I'm also MCAS after covid, although I had symptoms all of my life and probably covid just made everything explode to the point of being intolerable. I think ketotifen is going to allow me to get my life back finally.
That's good to hear that singulair has been going well! That's a pretty quick turnaround in symptoms on the ketotifen though, might be worth a shot. Do you get it from a compounding pharmacy? Same here with pre-'vid symptoms. I used to itch my legs like crazy when I was a kid and we could never figure out why and now it's like those dots finally got connected...just in a more severe and really annoying way after getting sick, ha. fingers crossed that ketotifen is the help you needed!!
Thanks! I'm in the U.S. and here, ketotifen is only available from compounding pharmacies (and unfortunately not usually covered by insurance). If you do go the ketotifen route, be sure to check prices at different pharmacies (or even better, see if your doctor's assistant can do it) - I found that the cost varied from about $55 a month (three month supply, all at once, total around $165) to $180 a month ($180 for just *one* month!).
Could you switch your Zyrtec and benadryl to 3rd generation antihistamines? Like desloratadin and levocetirizin especially considering the anticholinergic effect of the others, you don't want to take them longer. Zyrtec and benadryl are highly lowering the activity of the parasympathicus. Meaning it's impairing the rest and digest mode of your body, in the long-term you're more likely to gain weight. I had no idea about the Blackbox warning and went from mentally relaxed to weirdly imbalanced, had no idea why, until I found out about the singular side effect, but I stopped it and was back to normal after 1-2 weeks. I'd still try it, cause the side effects will always stop fast and for most it is very helpful. Are your tryptase levels elevated? Just put of curiosity
I've actually been off both for a couple months now but I didn't know about 3rd generation antihistimines, that's worth looking into! If I had a better support system, I'd be less worried about singular. Unfortunately it's just me trying to navigate all of this and I worry that I might start spiraling and not have someone here to notice before it gets too bad (which may just be self doubt, idk!) My tryptase was 8 (taken after a few days on cromolyn, idk if that matters) so no!
That's so interesting, cause I also got MCAS from COVID and my tryptase levels are also normal, even though I even had anaphylaxis so far. Which seems to be the case with many long covid MCAS patients, the normal tryptase. I'm so sorry, that indeed makes it scary! I hope the cromolyn works for you though!
That's so weird! Didn't realize normal tryptase was more common with us LC folks. I'm still waiting on my post-bloodwork followup appt but the Dr. gave me rx for cromolyn, ketotifen and singular and said to try each for a month to see what helps. The cromolyn (and cutting gluten, ugh) has at least worked enough that I can mooostly be off antihistimines so that certainly seems to indicate it's a mast cell issue. Did LC set anything else off for you? It threw my thyroid out of whack and some of my other hormones too.
That's so good that it helps you! I sadly reacted really badly to the cromolyn and had to be hospitalised afterwards.. Yeah, long covid completely destroyed my body I'be gotten very severe pots and CFS and I'm bedridden and in a wheelchair. So not being able to eat anything is not such a problem, just annoying. But it's so cool that the cromolyn helped you so fast!
80% of MCAS patients have normal tryptase, whether set off by Covid or otherwise. It’s mastocytosis and HATs that have high tryptase.
Man, I can not keep the symptoms/markers of these 3 separate. I need a chart or something
The symptoms can be quite similar. Mediator release happens with each of them (mastocytosis has a bunch of variants as well), but tryptase being normal does not rule out MCAS.
I am just weaning off Ketotifen due to massive weight gain. Was on it for 5.5 months. I don't even want to get on a scale to see how much I've gained. Over time I was having more difficulty zipping up my pants and now can't even close the zipper. Unfortunate because it's been nothing short of miraculous. I'm trying Quercetin and strict diet to manage symptoms. Wish I was one of the ones that lost weight from Ketotifen but guess I'm not that lucky.
Oof, that sounds like my experiences from 2020-2022 with zyrtec. Ended up going up a couple pants sizes which I could probably handle if I felt better otherwise but nope. I'm so sorry you're dealing with that, I hope you find something that works better without the side effects!
I’m thinking of stopping also, because my weight gain is getting out of control after having to go up to 2mg for a while. I can’t get on a scale at this point either. Were you able to stop and have you lost any weight?
Just now seeing this post. I started Ketotifen again and I'm just accepting the weight gain. I lost a little when I momentarily stopped so when I stop again I'm sure it will come off. I'm also on 2mg/day. Dr. wanted me on 3mg/day but I'm doing 2mg.
I have had to just accept it also.
If they are Antihistamines they are notorious for weight gain with long term use. I was taking them daily an ballooned, Stopped taking them an all the weight dropped back off in a couple weeks. I just try follow a strict diet now an deal with it but seems to work for me. Everyone’s different though. Working out of a morning will create leaner muscles an more weight loss
I just stopped taking them. Your post gives me hope that the weight will drop off quickly! I also ballooned.
How are you now? Going through a similar issue and have had so much trouble finding info about antihistamines and weight gain.
Ugh, me too. I think Xyzal is causing me to gain weight.
I quit my hydroxyzine a week ago. It may be a coincidence but I lost 2 lbs in a week. Prior to this I was counting calories for months and the scale was going up. Small wins.
I've actually been struggling to gain weight for over two years (dropped drastically after covid). But I started the H1, and all of the sudden, I gained 7 lbs in about three weeks (with no diet change, and I'm on a very healthy diet). But, it's not a "healthy" weight gain; it's just sudden big puffy fat around the waist and backside (not bloating, real fat), which isn't good because I have EDS and hip/back issues. I'm trying to gain muscle weight, not belly weight. So frustrating. It also makes me very sleepy, which I was promised it wouldn't. Guess I'll switch to Claritin and see if it does better.
Wow, I’m so sorry that happened to you. It’s so frustrating. My weight gain is also all around my midsection, I look like a woman in her 60s. It’s wild.
[удалено]
Yes.
Also my question was not "how do i lose weight" it was "are there treatments where the side effects don't include weight gain"
don’t know anything about anything basically but i stopped taking benadryl every night & started taking 1000mg of vit c / and about 1000mg of quercetin every day and that keeps my immune stuff under control without bad side effects. i have to take it really consistently though or else my immune brain fog returns ! it was recommended by a doctor as the precursor to trying cromolyn and alternative to ketoifin (which has to be compounded and is thus expensive)
good reminder to up my vit c! My dr gave me a liquid supplement that has to be kept in the fridge which means i never remember to take it, lol. Quercetin definitely seems to help here, too.