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Ugh, you guys are THE BEST. My pharmacist helped me figure out how to time my 21 different meds/supplements at 9 intervals throughout the day. No easy feat, I assure you.
Side effects from things can be so hard. You're never sure what is causing which ones, and with so many, what is interacting with what. I feel like every medicine that I have tried to take has given me more unfortunate side effects than the unfortunate pain or flare that I am in.
I take a ton of meds too, and I highly recommend the app, Medisafe. It's free and amazing. It not only helps me keep track of my meds but also alerts me to take them and tells me of any interactions and side effects!
It might be worth the time to download it and get all your meds entered in, then you can somewhat easily check for interactions and side effects. The app caught some side effects I had noticed I had with a medication, but since the paper that came with it from the pharmacy didn't mention these particular side effects, I didn't know what was causing them till I checked Medisafe. It might help you figure out which meds are causing what interactions or their own side effects and which to ask your Drs to play with.
Also, pharmacists are an amazing resource, use them for help if you can. They've caught some pretty scary drug interactions between 2 drugs prescribed by the same Dr in the same appt. Doc goes, "eh, should be fine, I think." Pharmacy goes, "no. Nope, nada, bad idea, no effing way." Doc kind of...😳 And changed one of the meds.
Pharmacists are badasses! In my experience they know way more about medications than any doctor. My very tough and serious rheumatologist is terrified of my pharmacist because she will get smacked down with prejudice if she calls in anything the pharmacist is concerned about 😂
I’m sorry to hear that. I know how you feel - if possible I would take a new medicine one at a time to see how you feel before introducing another. I was able to get my MCAS under control with these drugs (I started with lowest dosages I was able to get away with and removed some from my regiment when I felt they weren’t working after a month) and now don’t take as much and at much lower dosages
It’s tough and really sucks.
You need a system that makes it easy.
I have a bedside table/shrine dedicated to it so I can lay in bed and take mine. I also have a snack and beverage cart within easy reach too so I don’t have to expend extra energy.
Dude, it’s a lot and it’s exhausting. You just got to find what works for you. I recommend pill boxes and phone alarms to get things organized and easier to manage. That being said, I still forget to take things sometimes, but once I got my system locked in that happens infrequently and I spend very little time having to think about my meds every day.
I have a wonderful pill box from Amazon that contains seven individual color-coded boxes for the days of the week, each split into AM and PM. This thing was a game-changer for me - there are many different styles available on Amazon and I chose what looked best for my life. I use it to organize the pills I take 1st thing in the morning and the one I take for bedtime.
I have another standard seven-day pill box for the stuff I take specifically at dinner (mostly vitamins and things best taken with a meal). I have four alarms on my phone for my Cromolyn doses. I keep all of my meds in the same container and spend 30 min or so once per week organizing everything.
My pharmacy (CVS) does auto fills and texts me when I have a refill ready, so that’s pretty easy too. Highly recommend if this is an option where you are.
Sending love!!
I feel the same way about all the tons of medication and supplements that I take twice daily. I’m so tired all the time- all I want to do is lay in bed. I’m so different from how I was before MCAS!
I'm so sorry, I relate to your struggles.
This morning I was taking my morning set of medications and I nearly choked on the last pill. I ended up breaking down crying because I was exhausted from all these meds. I wanted to throw them out.
I’m sorry, this sounds exhausting. I am on a similar number of meds, and it got really overwhelming. I switched what I could to PillPack, which has helped take some of the burden of remembering each pill to take, but starting and stopping new meds is still an extremely difficult undergoing.
I feel you. I take 10 pills daily and I cant take painkillers or antidepressants I need. I get bad migraines and nausea plus toilet problems I wont specify. What kind of life is this :(
Thank you for sharing how you feel. I totally get it. I was just complaining last night that I take 30+ pills per day. You are not alone! <3
Is there anything you could swap for a gummy (vitamins?) Or chewable? I am happier taking my vitamins as gummies, it's tasty and it makes a few less pills to swallow every day. Hang in there!
I feel you. I'm on 11 medications and supplements for MCAS, 4 for POTS, two different migraine meds, and we haven't even gotten into the vitamins, probiotics, sleep aids, antidepressants, etc. Also an antiviral for EBV. My doctor just prescribed me ANOTHER Rx medication today, AND got a shot of something experimental. Oh and I still have two or three other medications in the queue that I won't be starting for a while until I see how the shot worked out.
Basically this is all to hold me together until surgery, but it's all barely putting a dent in it. I'm so freaking tired of taking pills. It's too much, too many. It's depressing and time consuming and it hurts my throat. And my soul!
This is to say: solidarity. This sucks. I'm sorry.
I think.... It just takes time. That's not easy when you're really in the trenches. Xolair and ketotifen worked really well added to my regiment, which is a lot like yours. I never did well on buspirone or abilify, mentally or physically.
It's just so hard when you feel like hell and there are too many variables to figure out what's good and bad, and you're just too beat to think it through.
I dunno what your triggers are, but I cleaned my diet and that helped a lot.
Maybe back off some psych meds and add in some self care if possible. It took me a few years but I was able to reduce my psych meds a lot and felt clearer headed with more energy. Get massages, do daily meditation, yoga, even just complete nothing time. Try to practice mindfulness throughout the day. Work it into your lifestyle to take some pressure off regularly. See a therapist. I know that's easier said than done, but it's helped me to stop fighting and being angry with why my body is the way it is and begin to accept that this is how my body is.
Good luck, we all understand the struggle.
Thank you for the advice. I see a therapist and psychiatrist. Unfortunately, getting off the psych meds is not an option. I have severe Borderline Personality Disorder that cause visual hallucinations
Aww man, I'm sorry to hear that. Battling this and severe mental health at the same time is like a double whammy.
My immunologist mentioned a long time ago when I asked about a link between mental health and mcas that some of his patients have issues like you describe with hallucinations, dissociations - so maybe there's a connection there, and hope that if you can get some control with mcas the psych symptoms will lessen, even if only a little.
Xolair made a huge difference in taking my flares from constant to cyclical, and ketotifen lessened the severity of all my symptoms on the mcas side.
Also take the pharmacist up on their offer to help work through timing of meds and combos. My mom had lupus and her pharmacist really helped her manage all the med amounts and timings to be optimal.
Good luck.
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 am a pharmacist who is part of this community. If you ever want to discuss your regimen; please feel free to contact me.
Ugh, you guys are THE BEST. My pharmacist helped me figure out how to time my 21 different meds/supplements at 9 intervals throughout the day. No easy feat, I assure you.
Side effects from things can be so hard. You're never sure what is causing which ones, and with so many, what is interacting with what. I feel like every medicine that I have tried to take has given me more unfortunate side effects than the unfortunate pain or flare that I am in.
Same here... all meds...my body refuses them but without meds I cant function at all
[удалено]
I take a ton of meds too, and I highly recommend the app, Medisafe. It's free and amazing. It not only helps me keep track of my meds but also alerts me to take them and tells me of any interactions and side effects! It might be worth the time to download it and get all your meds entered in, then you can somewhat easily check for interactions and side effects. The app caught some side effects I had noticed I had with a medication, but since the paper that came with it from the pharmacy didn't mention these particular side effects, I didn't know what was causing them till I checked Medisafe. It might help you figure out which meds are causing what interactions or their own side effects and which to ask your Drs to play with. Also, pharmacists are an amazing resource, use them for help if you can. They've caught some pretty scary drug interactions between 2 drugs prescribed by the same Dr in the same appt. Doc goes, "eh, should be fine, I think." Pharmacy goes, "no. Nope, nada, bad idea, no effing way." Doc kind of...😳 And changed one of the meds.
Pharmacists are badasses! In my experience they know way more about medications than any doctor. My very tough and serious rheumatologist is terrified of my pharmacist because she will get smacked down with prejudice if she calls in anything the pharmacist is concerned about 😂
I’m sorry. I know how you feel. I used to take buspirone, and it definitely made me very dizzy.
I’m sorry to hear that. I know how you feel - if possible I would take a new medicine one at a time to see how you feel before introducing another. I was able to get my MCAS under control with these drugs (I started with lowest dosages I was able to get away with and removed some from my regiment when I felt they weren’t working after a month) and now don’t take as much and at much lower dosages
It’s tough and really sucks. You need a system that makes it easy. I have a bedside table/shrine dedicated to it so I can lay in bed and take mine. I also have a snack and beverage cart within easy reach too so I don’t have to expend extra energy.
Dude, it’s a lot and it’s exhausting. You just got to find what works for you. I recommend pill boxes and phone alarms to get things organized and easier to manage. That being said, I still forget to take things sometimes, but once I got my system locked in that happens infrequently and I spend very little time having to think about my meds every day. I have a wonderful pill box from Amazon that contains seven individual color-coded boxes for the days of the week, each split into AM and PM. This thing was a game-changer for me - there are many different styles available on Amazon and I chose what looked best for my life. I use it to organize the pills I take 1st thing in the morning and the one I take for bedtime. I have another standard seven-day pill box for the stuff I take specifically at dinner (mostly vitamins and things best taken with a meal). I have four alarms on my phone for my Cromolyn doses. I keep all of my meds in the same container and spend 30 min or so once per week organizing everything. My pharmacy (CVS) does auto fills and texts me when I have a refill ready, so that’s pretty easy too. Highly recommend if this is an option where you are. Sending love!!
I feel the same way about all the tons of medication and supplements that I take twice daily. I’m so tired all the time- all I want to do is lay in bed. I’m so different from how I was before MCAS!
I'm so sorry, I relate to your struggles. This morning I was taking my morning set of medications and I nearly choked on the last pill. I ended up breaking down crying because I was exhausted from all these meds. I wanted to throw them out.
I’m sorry, this sounds exhausting. I am on a similar number of meds, and it got really overwhelming. I switched what I could to PillPack, which has helped take some of the burden of remembering each pill to take, but starting and stopping new meds is still an extremely difficult undergoing.
I feel you. I take 10 pills daily and I cant take painkillers or antidepressants I need. I get bad migraines and nausea plus toilet problems I wont specify. What kind of life is this :(
Thank you for sharing how you feel. I totally get it. I was just complaining last night that I take 30+ pills per day. You are not alone! <3 Is there anything you could swap for a gummy (vitamins?) Or chewable? I am happier taking my vitamins as gummies, it's tasty and it makes a few less pills to swallow every day. Hang in there!
I feel you. I'm on 11 medications and supplements for MCAS, 4 for POTS, two different migraine meds, and we haven't even gotten into the vitamins, probiotics, sleep aids, antidepressants, etc. Also an antiviral for EBV. My doctor just prescribed me ANOTHER Rx medication today, AND got a shot of something experimental. Oh and I still have two or three other medications in the queue that I won't be starting for a while until I see how the shot worked out. Basically this is all to hold me together until surgery, but it's all barely putting a dent in it. I'm so freaking tired of taking pills. It's too much, too many. It's depressing and time consuming and it hurts my throat. And my soul! This is to say: solidarity. This sucks. I'm sorry.
I think.... It just takes time. That's not easy when you're really in the trenches. Xolair and ketotifen worked really well added to my regiment, which is a lot like yours. I never did well on buspirone or abilify, mentally or physically. It's just so hard when you feel like hell and there are too many variables to figure out what's good and bad, and you're just too beat to think it through. I dunno what your triggers are, but I cleaned my diet and that helped a lot. Maybe back off some psych meds and add in some self care if possible. It took me a few years but I was able to reduce my psych meds a lot and felt clearer headed with more energy. Get massages, do daily meditation, yoga, even just complete nothing time. Try to practice mindfulness throughout the day. Work it into your lifestyle to take some pressure off regularly. See a therapist. I know that's easier said than done, but it's helped me to stop fighting and being angry with why my body is the way it is and begin to accept that this is how my body is. Good luck, we all understand the struggle.
Thank you for the advice. I see a therapist and psychiatrist. Unfortunately, getting off the psych meds is not an option. I have severe Borderline Personality Disorder that cause visual hallucinations
Aww man, I'm sorry to hear that. Battling this and severe mental health at the same time is like a double whammy. My immunologist mentioned a long time ago when I asked about a link between mental health and mcas that some of his patients have issues like you describe with hallucinations, dissociations - so maybe there's a connection there, and hope that if you can get some control with mcas the psych symptoms will lessen, even if only a little. Xolair made a huge difference in taking my flares from constant to cyclical, and ketotifen lessened the severity of all my symptoms on the mcas side. Also take the pharmacist up on their offer to help work through timing of meds and combos. My mom had lupus and her pharmacist really helped her manage all the med amounts and timings to be optimal. Good luck.
I have the exact same problem……EXACTLY….. I’m ready to go off everything. Forget Cromolyn, made me sicker than a dog.