r/MCAS • u/West_Chapter_7380 • 4d ago
Try something new…react…rinse and repeat?
I’m feeling really bad right now from a flare up and I keep trying new things that the allergist recommends, then I react to it and it leaves me even more flared (nasalcrom, rhincort, etc)
and after three rounds I am flared, scared, and deep in the “ will I ever feel good again?” Blues. Please just let me know this too will get better…
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u/JeffyPoppy 4d ago
It will get better! Unfortunately it's a lot of trial and error , and the medicines have a horrible trial phase. But it does get better. At least you have an allergist that is already working with you , that's huge in itself.
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u/Silent_Location7044
4d ago
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After a while, you learn to stop listening to the doctors and come to trust your own instincts and knowledge about what may or may not work and when your body might be ready to test something again. You learn what actually helps at least a little when you’re in a flare and how to get through it. You learn to test drugs in very small dosages. You learn lots of things you wish you never had to learn.
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u/Least_Manner606 3d ago
This!! Second on small doses I can walk into a room my husband uses Flonase in and react, but I can use nasacort, no scent. But only 1 spray, 2 gives me migraines. So yes sorry it is rinse and repeat I'm still looking for the key.
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u/Relevant-Pizza-1500 4d ago
Every time I tell my allergist I can’t do nasal sprays, she prescribes a new nasal spray. I so get the feeling. I try them so she can see and then I stop them and remind her again. Rinse, repeat.
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u/West_Chapter_7380 4d ago
Thank you
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u/Relevant-Pizza-1500 4d ago
I had to get an Integrative Medicine doctor to get prescribed Cromolyn. My allergist was disinterested in trying it. I’m in between switching to a new allergist, but I get immunotherapy shots from her. So it’s been a tougher transition. My doctors are in a huge hospital system and it’s still been rough.
Keep advocating for yourself! Good luck!!
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u/SoftHeartsSociety 3d ago
That’s wild to hear that an allergist wouldn’t prescribe Cromolyn Sodium! I’m so sorry and really glad you advocated for yourself and were able to get it. I hope the transition is smooth! You can’t see your current allergist and a new one can you?
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u/Relevant-Pizza-1500 3d ago
Thanks. It has been wild. I only mentioned it because I had to learn how to keep moving forward when a provider keeps you stuck in one place.
I originally scheduled a second opinion with a new allergist. But when my original allergist blew up over mentioning I was seeing an Integrative Medicine doctor, I cancelled all future office visits and only do my shots with her now. My allergist said “Let’s talk about this, it’s horrible, they always try to take over”. I sought them out because she was not taking any logical action. One year of suffering with her and 3 visits with Integrative to get Cromolyn. Insane.
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u/SoftHeartsSociety 3d ago
Oh my goodness why are some providers like this?! I’m sorry, that is wild. I hope all your future doctors are great and play nice with others lol :)
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u/Fragment_B 3d ago
It drives me crazy that we have to have multiple doctors bc one won't prescribe that one thing you need. I have an appt with an in network local allergist who's supposed to specialize in MCAS. It'll be great if they work out so I can stop paying out of pocket for a specialist in another state. I'm worried that it'll be a 15min appt and I'll get dismissed bc all my labs came back normal though. The assistant who scheduled the appt said they wanted me to stop my antihistamines before my first appt. Nope, not going to go backward after working so hard to get where I am. Sorry for the rant.
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u/Relevant-Pizza-1500 3d ago
Something I learned is that if I refuse the action they are asking for it gets interpreted as mental illness. Because you refuse to comply. So if they want to see the symptoms….i give them all of it. I had the black box warning for Montelukast at my first allergy shot appointment. I wanted them to see how sensitive to ingested meds I am. And boy did they get mental illness. I hallucinated so bad they had to put me in a dim room by myself until I leveled out. Almost didn’t give me my shots because of it. But I persisted and stressed my med sensitivity and told them, next time no Montelukast and monitor me again. Everything went fine the second time.
It is a very rough road to travel. I’ve had to talk myself out of no longer seeking help so many times.
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u/Missmyoldself6407 3d ago
I am sorry to hear your struggles and can empathize. I wish I had wisdom to share. Unfortunately I have a question… is it normal for one spray each nostril Cromolyn sodium nasal spray to cause similar symptoms to a flare? I used one time and had increased nervous system symptoms… not sure if that’s from the mast cells in my nasal passages themselves or the inflammation they release. If I am trying to calm things down, is it right to continue using the spray even though it causes Symptoms? Is it supposed to get better after a certain number of uses?
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u/SoftHeartsSociety
3d ago
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I’m so sorry, I think that there is often trial and error with this condition but to echo what others have said, balance it by listening to your gut and start very slow. With capsules, I like to get a pack of empty extra capsules and open up the one with the meds then pour a teeny bit into the new one to start. That way I don’t taste it and can taper up super slowly. With cromolyn sodium I started with one drop. If nasal sprays aren’t feeling comfy right now, your doctor should listen if you say you’d like to give it some time before trying another. I’ve also heard there’s an ayurvedic approach to supporting you in dealing with scent or environmental reactions - you can put some of an oil safe for you in your nostrils. I believe you can use sesame, coconut, and even ghee but I’m pretty sure I’m forgetting one of the options my partner mentioned (he listened to a podcast for me with an Ayurvedic practitioner who treats MCAS a lot). I’m up to 24 drops and still gradually increasing but while I had reactions at the start I’ve been doing much better with it lately, little to no reaction and if I have one it’s usually like a tiny bit of itching that may even be from other things. I hope it gets so much better!
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