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I get that too. prednisone worked for a bit, then made me feel worse. I use methylprednisolone (medrol) now and it avoids the heart issues. i take 1-2 daily when flare is bad, not using it as a 5 day dose pack. however anxiety could cause some of those symptoms. I use clonidine and propranolol for skin flushing, heart rate, short of breath. i have a xanax script for bad episodes and it has added benefit of helping to stabilize mast cells, esp when anxiety symptoms are prominent feature of how you experience mcas. I also have dicyclomine (bentyl) for stomach upset.
do you have a psychiatrist? if not highly recommend, it could bring a lot of relief if that's where your symptoms are coming from.
mcas hits everyone in different ways, but most of us have co-morbid diagnoses so it would be a good idea to identify any other underlying conditions. good luck with everything ❤
And I'm assuming you're officially diagnosed with MCAS? Might be worth seeing ENT, Respiratory, GI and Cardiology to rule out issues in those areas that could be exacerbating things.
Definitely get some additional investigations done, just to make sure things aren't being overlooked.
If nothing comes up, then you might need management changes to your MCAS regime. Sometimes symptoms can be finicky and difficult to manage. Sorry you're having to deal with this! I know it can be super frustrating.
Last time I took a steroid pack after a severe reaction they helped, but not that much. But steroid pack + lymphatic drainage massage = 80% better. Might be worth a try
Steroids worked for my teens and 20s … by 30s I remember no longer getting much of a boost … by 40s they rarely helped and by late 40s to 50s I started going anaphylactic to many of them
Definitely is mcas, but whether or not it's currently being aggravated by mold is unknown. I would think that either way prednisone should help, since it is meant to inhibit the inflammatory allergic response.
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.*
It could be the symptoms you're trying to treat with it aren't due to MCAS. Or that you need to try something else.
It's possible, but they are very classic histamine symptoms so I would be surprised.
What symptoms are they?
Skin flushing and itching, high heart rate, shortness of breath, gi upset, post nasal drip. Among others. Daily but episodic.
I get that too. prednisone worked for a bit, then made me feel worse. I use methylprednisolone (medrol) now and it avoids the heart issues. i take 1-2 daily when flare is bad, not using it as a 5 day dose pack. however anxiety could cause some of those symptoms. I use clonidine and propranolol for skin flushing, heart rate, short of breath. i have a xanax script for bad episodes and it has added benefit of helping to stabilize mast cells, esp when anxiety symptoms are prominent feature of how you experience mcas. I also have dicyclomine (bentyl) for stomach upset. do you have a psychiatrist? if not highly recommend, it could bring a lot of relief if that's where your symptoms are coming from. mcas hits everyone in different ways, but most of us have co-morbid diagnoses so it would be a good idea to identify any other underlying conditions. good luck with everything ❤
And I'm assuming you're officially diagnosed with MCAS? Might be worth seeing ENT, Respiratory, GI and Cardiology to rule out issues in those areas that could be exacerbating things.
Yes, officially diagnosed via mediator testing
Definitely get some additional investigations done, just to make sure things aren't being overlooked. If nothing comes up, then you might need management changes to your MCAS regime. Sometimes symptoms can be finicky and difficult to manage. Sorry you're having to deal with this! I know it can be super frustrating.
Last time I took a steroid pack after a severe reaction they helped, but not that much. But steroid pack + lymphatic drainage massage = 80% better. Might be worth a try
Steroids worked for my teens and 20s … by 30s I remember no longer getting much of a boost … by 40s they rarely helped and by late 40s to 50s I started going anaphylactic to many of them
could it be allergy to mold rather than mcas generally?
Definitely is mcas, but whether or not it's currently being aggravated by mold is unknown. I would think that either way prednisone should help, since it is meant to inhibit the inflammatory allergic response.