Hey! Normal dose did nothing form, but when I take 4mg Ketotifen a day, so a double dose, I feel better - my low grade fever drops a bit (but not enough...). I'm not sure what's my diagnosis, here's my case if you're interested: http://forums.phoenixrising.me/inde...ly-symptom-spring-summer-exacerbations.42599/
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Has anyone taken Ketotifen for MCAS?
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Gingergrrl
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@Tomas I have not read your link yet but for me, 4 mg of Ketotefin per day is my regular dose (2 mg 2x/day) and is not considered a double dose (for me.) My doc said I could go as high as 8 mg per day so I know there is a lot of room with this med. It is the best maintenance mast cell stabilizer of everything that I tried and has been a huge success for me (which I did not yet know when I started this thread!)
ETA: I read your link and I have not had a fever in over three years (my daily temp is approx 97.4) and my symptoms are very different than yours.
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I have been planning to try Ketotifen for MCAS. Seeing your thread reminded me. I will subscribe to this thread to give me more reminders. I think I will only try it at night to start, because a lot of meds make me sleepy. Maybe 1mg or less to start.
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Hi all.
@Gingergrrl, I'm sorry to read about your difficulties. I realize your last post on this thread was several months ago. Are you doing better? Has something helped you? I just replied to another older thread where you discussed your paradoxical reaction to midodrine - I have had the same somnolent reaction.
My doc just diagnosed mast cell disorder and prescribed both ketotifen and oral cromolyn. I've been trolling the net looking for feedback on how to deal with the sleepiness caused by ketotifen.
Have you or has anyone else here taken cromolyn for mast cell disorder?
@Gingergrrl, I'm sorry to read about your difficulties. I realize your last post on this thread was several months ago. Are you doing better? Has something helped you? I just replied to another older thread where you discussed your paradoxical reaction to midodrine - I have had the same somnolent reaction.
My doc just diagnosed mast cell disorder and prescribed both ketotifen and oral cromolyn. I've been trolling the net looking for feedback on how to deal with the sleepiness caused by ketotifen.
Have you or has anyone else here taken cromolyn for mast cell disorder?
HI I am new to this forum. I haven't been officially diagnosed as having MCAD but it looks like Lyme has triggered it. I am currently taking ketotifen....1mg before bed (for two weeks) and I took 1/4 this am. I did manage an exercise class this morning but I spent the whole afternoon sleeping; extremely fatigued. I hope this passes quickly. I wonder about taking the 1/4 at night time. Anyone else take ketotifen only at night?
Gingergrrl
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@koco I can give you more info via PM if it would be helpful but in a nutshell, cromolyn (Gastrochrom) did nothing for me except GI problems whereas Ketotefin was the med that allowed me to eat food again without anaphylaxis. I take 2 mg 2x/day since last July. It no longer makes me sedated whatsoever but sadly caused weight gain. I take it 30-60 min prior to eating per my MD. Hope this helps.
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Thanks, @Gingergrrl. When you say "cromolyn (Gastrochrom) did nothing for me except GI problems", do you mean that the cromolyn helped with your GI issues or gave you problems? Also, how long did it take before you no longer felt sedated by ketotifen? I appreciate your insights.
Mercifully, I haven't had the symptom of anaphylaxis. You know how folks often offer the platitude, "it could be worse" when you express distress over something? I've never found that comforting advice because I find myself terribly empathetic to the suffering of others. I suppose the implied meaning is supposed to be about gratitude for your own blessings.
Anyway, my MCAS symptoms manifest as headaches, asthma, GI problems (stabbing pain & occasional nausea and diarrhea), bladder irritation (I feel like I have to pee desperately all of the time), and hypotension. There may be particular food sensitivities, but I haven't been able to pinpoint them yet. I feel sick often after I eat and I need to be conscientious about keeping a log. I've tried elimination diets, but haven't observed anything remarkable yet.
The diagnosis of MCAS came to light after one year of treatment with low dose naltrexone for CFID & cell-mediated immune deficiency. My first immune panel pre-treatment showed my natural killer cell count was extremely low and the cell activity level was below the 10th percentile. After one year taking ldn, building slowly to a dose of 4.5 mgs, which I've been on for about four months now, my cell count was still very low, but the cell activity level shot up to about the 60th percentile! Many symptoms of CFIDS had improved marginally (as y'all can attest, marginal improvement is huge for us), but since all the aforementioned symptoms remained, my doc concluded the diagnosis of MCAS and prescribed the ketotifen and cromolyn. She had prescribed midodrine for hypotension earlier, but I was unable to start it because I became sick with asthma for several weeks and since the asthma drugs tend to increase the heart rate, I didn't want to take anything else that might have exacerbated that.
Yesterday was really a venting session for me. Thanks for listening! I hadn't slept properly in over a week and felt much sicker than I had before I started taking the keto. I've decided to back way off and introduce one drug at a time, starting with cromolyn. I did not take a nighttime dose of keto last night and feel a bit more alert today. I'll try taking just the cromolyn for a few weeks and report back on the results. I hope it helps to alleviate some or all of my symptoms.
Mercifully, I haven't had the symptom of anaphylaxis. You know how folks often offer the platitude, "it could be worse" when you express distress over something? I've never found that comforting advice because I find myself terribly empathetic to the suffering of others. I suppose the implied meaning is supposed to be about gratitude for your own blessings.
Anyway, my MCAS symptoms manifest as headaches, asthma, GI problems (stabbing pain & occasional nausea and diarrhea), bladder irritation (I feel like I have to pee desperately all of the time), and hypotension. There may be particular food sensitivities, but I haven't been able to pinpoint them yet. I feel sick often after I eat and I need to be conscientious about keeping a log. I've tried elimination diets, but haven't observed anything remarkable yet.
The diagnosis of MCAS came to light after one year of treatment with low dose naltrexone for CFID & cell-mediated immune deficiency. My first immune panel pre-treatment showed my natural killer cell count was extremely low and the cell activity level was below the 10th percentile. After one year taking ldn, building slowly to a dose of 4.5 mgs, which I've been on for about four months now, my cell count was still very low, but the cell activity level shot up to about the 60th percentile! Many symptoms of CFIDS had improved marginally (as y'all can attest, marginal improvement is huge for us), but since all the aforementioned symptoms remained, my doc concluded the diagnosis of MCAS and prescribed the ketotifen and cromolyn. She had prescribed midodrine for hypotension earlier, but I was unable to start it because I became sick with asthma for several weeks and since the asthma drugs tend to increase the heart rate, I didn't want to take anything else that might have exacerbated that.
Yesterday was really a venting session for me. Thanks for listening! I hadn't slept properly in over a week and felt much sicker than I had before I started taking the keto. I've decided to back way off and introduce one drug at a time, starting with cromolyn. I did not take a nighttime dose of keto last night and feel a bit more alert today. I'll try taking just the cromolyn for a few weeks and report back on the results. I hope it helps to alleviate some or all of my symptoms.
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I started Ketotifen a couple weeks ago, 1 mg 2x per day. After first days doing that does, one day i was hit so hard with immoblizing sedation—I was nearly hanging off the bed with my mouth open all day. Was pretty awful.
I've tried to back off and take in a more manageable way. Did tons of reading, though maddening how little info there is online regarding ORAL side effects, etc.
I think even 1mg, if I take a couple days or even break up into 'sips' (mostly in the evening) has exponentially increased the exhaustion. I've had periods where sleeping for hours in the day and hellish-twilight level weird half-consciousness have been symptoms—but it's so hard to remember if it felt like THIS, especially when feel so bad. No perspective at the moment.
I took cromolyn last year, but insurance woudn't cover at all and out of pocket compounding just got insanely expensive. I remember as the doctor kept telling me to take MORE each day (up to 8 pills cromolyn), I asked what side effects I might expect so I'm ready and not freaked out by something more-new. He told me that diarrhea would probalby happen. Never did. This past 6 months, outright collapsed a couple times and came back with extremely high histamine blood tests from Hospital—that seemed to help get coverage for the BRAND-available liquid cromolyn. ONE dose of that causes that bad stomach issue—miserably and painfully so. In retrospect, though it was not cure-level, i think that compounded oral Cromolyn was helping me some. I was on a slow slow upswing last year, then went down again. Though stopping the expensive cromolyn was only one of a number of variables that might have knocked me down hard this last year. Really, at a point, I have no idea what is what.
I did find a few online mast cell forums where people are taking Ketotifen and say they had been extremely tired—but it's always hard to determine how much. I've been non-functional—many many hours after taking, the entire next day, etc. And most here will understand, extra symptoms or side effects dont exist in a vacuum they come right alone with whatever else we're dealing with in the first place.
And online can be tough. For me, I always end finding so many people who say "oh, i was SO sick for so long, but X thing helped me so much!' and I get this hope thing, then i try and it seems like a fiasco. And as great as resources here are, it's so hard to get real guided help when you're pinballed into 10 different kinds of debilitating misery each day. I dont mean to be extreme, I've been sick for 10 years and nearly completley housebound. I had 3 periods where I was recovering in tiny hopeful increments and then fell off the earth again. It's maddening. What was I doing right, what am I doing wrong.
And with new or intensified symptoms, I dont' know about any of you, but sometimes—because it's always so impossible to know for sure what is going on, or a reasonable baseline from which we can sort of judge the effects of things (prior to this illness, I mean, if I took some supplement or ate some food, and got a headache or sick to my stomach an hour later, it was pretty easy to tell. THIS illness? No baseline, always sick, in some cycle)
I"m so utterly miserably, scared exhausted I'm gonna stop the ketotifen. I know I'm not taking a high dose. I'm not even sure that's what's causing it. I also, like many here, dont have MCAD in a vacuum—there's the larger CFS and all that stuff. I was so hopeful, after discovering that a lot of symptoms may really be b/c of the mast cell issues (see extraordinarily high histamine tests during collapse and also at a not-collapsing but pretty bad day)—I might actually feel better. But for the 100th time, I feel like a guinea pig with no clear direction. I have changed my diet hugely—honestly, when MCAS was a clinical-only diagnosis and I've had so many of those, i didn't know how seriousy to take it. I do now, but I have already tried some of the other meds and supplements for mast cell—and nothing has seemed to help hugely, many things already making me non-functional miserable and really just feel lost in all of this. Again.
this reads more like a crazy person than a clear question. I guess just any group wisdom would be appreciated. Thanks.
I've tried to back off and take in a more manageable way. Did tons of reading, though maddening how little info there is online regarding ORAL side effects, etc.
I think even 1mg, if I take a couple days or even break up into 'sips' (mostly in the evening) has exponentially increased the exhaustion. I've had periods where sleeping for hours in the day and hellish-twilight level weird half-consciousness have been symptoms—but it's so hard to remember if it felt like THIS, especially when feel so bad. No perspective at the moment.
I took cromolyn last year, but insurance woudn't cover at all and out of pocket compounding just got insanely expensive. I remember as the doctor kept telling me to take MORE each day (up to 8 pills cromolyn), I asked what side effects I might expect so I'm ready and not freaked out by something more-new. He told me that diarrhea would probalby happen. Never did. This past 6 months, outright collapsed a couple times and came back with extremely high histamine blood tests from Hospital—that seemed to help get coverage for the BRAND-available liquid cromolyn. ONE dose of that causes that bad stomach issue—miserably and painfully so. In retrospect, though it was not cure-level, i think that compounded oral Cromolyn was helping me some. I was on a slow slow upswing last year, then went down again. Though stopping the expensive cromolyn was only one of a number of variables that might have knocked me down hard this last year. Really, at a point, I have no idea what is what.
I did find a few online mast cell forums where people are taking Ketotifen and say they had been extremely tired—but it's always hard to determine how much. I've been non-functional—many many hours after taking, the entire next day, etc. And most here will understand, extra symptoms or side effects dont exist in a vacuum they come right alone with whatever else we're dealing with in the first place.
And online can be tough. For me, I always end finding so many people who say "oh, i was SO sick for so long, but X thing helped me so much!' and I get this hope thing, then i try and it seems like a fiasco. And as great as resources here are, it's so hard to get real guided help when you're pinballed into 10 different kinds of debilitating misery each day. I dont mean to be extreme, I've been sick for 10 years and nearly completley housebound. I had 3 periods where I was recovering in tiny hopeful increments and then fell off the earth again. It's maddening. What was I doing right, what am I doing wrong.
And with new or intensified symptoms, I dont' know about any of you, but sometimes—because it's always so impossible to know for sure what is going on, or a reasonable baseline from which we can sort of judge the effects of things (prior to this illness, I mean, if I took some supplement or ate some food, and got a headache or sick to my stomach an hour later, it was pretty easy to tell. THIS illness? No baseline, always sick, in some cycle)
I"m so utterly miserably, scared exhausted I'm gonna stop the ketotifen. I know I'm not taking a high dose. I'm not even sure that's what's causing it. I also, like many here, dont have MCAD in a vacuum—there's the larger CFS and all that stuff. I was so hopeful, after discovering that a lot of symptoms may really be b/c of the mast cell issues (see extraordinarily high histamine tests during collapse and also at a not-collapsing but pretty bad day)—I might actually feel better. But for the 100th time, I feel like a guinea pig with no clear direction. I have changed my diet hugely—honestly, when MCAS was a clinical-only diagnosis and I've had so many of those, i didn't know how seriousy to take it. I do now, but I have already tried some of the other meds and supplements for mast cell—and nothing has seemed to help hugely, many things already making me non-functional miserable and really just feel lost in all of this. Again.
this reads more like a crazy person than a clear question. I guess just any group wisdom would be appreciated. Thanks.
Jill
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I took ketotifen way back in the 80s/90s. I have forgotten why I tried it - I think I must have read that it helped allergies. I had terrible gut symptoms at the beginning of the illness and ketotifen was the only thing that helped ( I had no idea why back then and still don't know why now although suspect it was mast cell related). I don't remember it being sedating but I was very very ill back then. We were able to get tablets in nz at the time but now don't seem to be able to . I drank this awful vivonex ( food replacement ) at the time also . Sorry I can't be of more help but I do remember thinking that without the ketotifen I wondered if I might die so it must have helped !
Ps I had to bludgeon the endocrinologist to try it but he prescribed it no problem but like me had no clue why it would help
Ps I had to bludgeon the endocrinologist to try it but he prescribed it no problem but like me had no clue why it would help
Old Bones
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@Michael_venice I'm sorry to hear your first trial of Ketotifen has caused so much grief. I, too, have recently started this medication -- just over a week ago. Based on the recommendation in Doctor Afrin's book, I suggested the same dosing you mentioned (1mg 2x per day) when asking my GP for a prescription. But, by the time I filled it, I was glad to have read a couple of posts in another thread mentioning the need to start very, very slow with this medication. The following are quotes from PR members more knowledgeable/experienced than I am about ketotifen. I'm hoping this will catch @Hip and @justy 's attention. @Gingergrrl is also a mast cell expert.
I followed the above advice, starting at 1/4 mg morning, and evening. This dose seemed to cause frequent awakenings for the first few nights before settling down. I've now upped the dose to 1/2 mg, morning and evening with the same result -- again, getting better each night. Within a few days, I may try an increase to 3/4 mg and see how that goes. It seems I'm not as sensitive to this medication as you are.
So far, the only benefit I've noticed (at the 1/2 mg dose) is significant improvement in the almost unbearable icy, stinging neuropathic pain in my feet. This is unexpected. Coincidence? I hope not.
I hope someone more knowledgeable than I am will respond to your post. In the meantime, perhaps go ahead with your plan to stop the ketotifen, with the thought of trying again later at the much-reduced doses suggested by @Hip and @justy. Good luck.
Gingergrrl
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It actually reads clear and I can feel the pain and anguish you are experiencing and am so sorry. Did the list of MCAS docs for our state help at all (it was a few weeks ago that I sent the link and am hoping you got it okay). I know there sadly are not many to choose from.
If I am it's by default b/c I was so bad off in 2015 and b/c I lucked out and found a very good MCAS doc. I do not tolerate many meds and am baffled that I tolerate Ketotefin so well. I took 4 mg per day for about a year and a half and only recently reduced the dose. It was the miracle med for me and I did not tolerate gastrocrom (cromolyn) at all.
There was another recent thread where someone asked if Ketotefin is a calcium channel blocker (CCB) so I asked my MCAS doc at my appt this week and he said it is not. He said it is a mast cell stabilizer and also serves as an H1 blocker but not a CCB. Am including this info in case it is helpful to anyone else w/anti calcium antibodies (and cannot find the thread where we were discussing this)! I suspect this is partially why I did not tolerate gastrocrom (which my doc said is a CCB).
Ketotifen is VERY sedating. Some people are not hit by it as hard as others - 2mg in one day would have left me in a coma for days if I had started at that dose. For most the sedating effects wear off - but im not sure I will ever tolerate it in the morning (currently taking 1/4 tab in the am, 3/4 at night. It also can take a long time for symptoms to settle once on it. Some of my worse neuro symptoms have improved a lot, as have reactions to things like smells etc, but sadly the severe fatigue of M.E/MCAS has not been affected for me.
Misfit Toy
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It's funny. I don't notice after feeling tired to it. I felt wired. I thought it was because I tried the T4 again and had an allergy, but realized, Ketotifen is the culprit. My stomach was out so far on it. Distended. I felt nuts on it. Nuts. I am still not right as now I am on prednisone due to what had happened. On the ketonifen, I started itching to the point of causing my skin to bleed. My eyes were watering on it. Horrible. Migraines everyday on it.
I know many feel great on it. For me, I was paranoid on it and felt awful. I was sweating at night and drenched. Like full on drenched.
Like someone else said, the LDN made it all worse for me. Then this and the T4 just pushed it over the edge.
I know many feel great on it. For me, I was paranoid on it and felt awful. I was sweating at night and drenched. Like full on drenched.
Like someone else said, the LDN made it all worse for me. Then this and the T4 just pushed it over the edge.
Gingergrrl
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MT, am so sorry you had such a horrible reaction to Ketotefin and wish I knew why we are all so different. I know I have talked a lot about how much it helped me but it is clearly not helping you so I would stop trying to make it work. Many people do well with Gastrochrom/Cromolyn (another mast cell stabilizer) but it was HORRIBLE for me when I tried it in 2015. Have you tried that one? I just wonder if maybe we are opposite in that regard.
Misfit Toy
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No, not yet. I am still so sick. I don't want to try anything else right now. My doctor made up a homeopathic of "histamine"...to reduce my reaction to Histamine. They say you can't react to it, I am reacting horribly. Migraine.
I can't see anyone to really deal with this for months. My doctor does not know how to prescribe things and my immunologist wants me back on IGG. Not IVIG, but IGG. I am scared to DEATH to take it. I reacted horrible to it and she wants me to take it daily. Small amounts daily.
I called the IDF. Immune Deficiency Foundation to try and get answers. IF there is another one I can take. I don't even know if I want to do this.
If I react to one more thing that I try, I am scared I may kill myself. The reactions are awful. I told my therapist that I have a plan in place if I get sicker. I am at my wits end. I have doom reactions and major depression to meds and food. Especially meds. That is worse for me than even food.
For whatever reason, between the T4 and the ketotifen, my body isn't settling down. I am off of them. It's a little better, but a very little and I can't sleep at all. I want God to just take me.
Strawberry
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@Misfit Toy Have your doctors contacted Dr Afrin? I wonder if he would have any ideas that could help you?
I keep praying you will find something for some relief!
I keep praying you will find something for some relief!
Misfit Toy
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@Strawberry -the waiting list to see Afrin is 2 years and up. I think you have to be an established patient in order for him to give advice to a doctor.
It's all very hurry up and wait. Right now, I am doing what I think I need best. I am taking off from any more doctor appointments as I am exhausted and overwhelmed and that is making my situation worse. Everyday it's a doctor or physical therapy and yesterday I had to have my car inspected, which took 3 hours with some work needed. I will think what to do next in a few days maybe. I live alone so regardless of how ill I am, I need to get somethings done. Friends are helping to get me to doctors and are getting me food.
I finally...finally slept last night due to sheer exhaustion. I am going to try and just rest all weekend.
I hate this life, but it's all I can do.
Thank you, @ebethc.
It's all very hurry up and wait. Right now, I am doing what I think I need best. I am taking off from any more doctor appointments as I am exhausted and overwhelmed and that is making my situation worse. Everyday it's a doctor or physical therapy and yesterday I had to have my car inspected, which took 3 hours with some work needed. I will think what to do next in a few days maybe. I live alone so regardless of how ill I am, I need to get somethings done. Friends are helping to get me to doctors and are getting me food.
I finally...finally slept last night due to sheer exhaustion. I am going to try and just rest all weekend.
I hate this life, but it's all I can do.
Thank you, @ebethc.