anaphylaxing

I get this as part of a reaction to food. Have you looked into MCAS at all? Do you get flushed? It could also be a POTS thing. I have both and they overlap and are likely related to one another.

Love hate for me. Was put on it to help anaphylaxis. Helped but turns out there would've been better meds and it shut down my adrenals like Rich said, so Ive been fighting to taper off for almost a year now. The adrenal insufficiency symptoms were not fun. I also got Cushingoid a few times whilst on high doses. I'm hoping my adrenal function returns but only time will tell.

Wow, so glad you found some answers. I hope his health improves! Dr. Afrin sounds wonderful

SO sorry to hear this. In my opinion, CT can very easily miss pheochromocytoma and MIBG is more sensitive. But, MIBG scans can give false positives. Were you on any medications that might've interfered with the scan such as antihistamines? Glad you have the world experts working on the case. Were your urine metanephrines and VMA positive? I hope you don't have one, but if you do I hope they find it quick and treat you well. Keep us posted Ana

smells are a MAJOR issue for me and give me allergic reactions. If anyone's found ways to improve that let me know

I have many moments of feeling the same way, just WISHING other people could understand as I know if they did, they wouldn't act the same way. It is sooo hard and feels sooo isolating. I share your sentiments.

I did halfs before too but now struggle with walking it's been ten months but i'm hoping i'll run again

So sorry to hear this it is so frustrating not to be able to do what you used to do. Babysteps are probably wiser but good for you for trying! I feel limited as well.

Awww I'm so sorry! Hang in there. You are brave to be dealing with all that you're dealing with!!

Interesting so glad everyone's thinking about it. I'd be worried about Spironolactone's diuretic effect in already often hypovolemic patients.

Thanks SO much for sharing this. I am so happy for you and it is inspirational for the rest of us.

Way to GO lemons!! Do you mind sharing your exercise regime?

Way to go Jangle!! Scary story Dani! Feel better soon!

Hello all, great discussion! I didn't read ALL of it but just wanted to add Out of interest those taking care of me for my acute initial episode were very familiar with grading anaphylaxis; particularly the anesthetists, but I still received damaging and incorrect treatment :S I also have ?MCAS/POTS etc

I agree exercise is wonderful and important. Just a caution do those of us with MCAS as the cause of our POTS as exercise induced anaphyalxis is not to be taken lightly and if your allergy symptoms are exacerbated by exercise then you need to take extra meds for it and bring your Epipen with you. Exercise is not a trigger for everyone, but for me it is. That said, a marathoner and workout nut before I got sick, I am trying to slowly rebuild activity within the limitation of my anaphylactic tendencies as I think it is key for cardiovascular health. Everyone's battle is unique and pushing as much as we can in the face of adversity is to be commended!

Sorry to hear this, I agree with Julie! I also have ED/POTS/MCAS

Interesting! I try to stand and walk as much as I can on good days but it's easy to get lazy. Starting to do some weights easy squats lunges too to try and rebuild all of my atrophied muscles, but am just tempted to go outside and run like I used to and see what happens My mast cell would probably freak

I have joint hypermobility and used to jog lots but it never felt super easy. I'd still like to get back into it as so few things kept me in shape as well as that but since being sick it's walking and a peddle bike so far but I am hoping to build up!

Wow way to go. Good for you. Do you wear a heart rate monitor when you jog? I'm worried my heart will go nuts and my mast cell symptoms will explode but I need to build up from walking. I used to LOVE running and miss it and workouts heaps Hope you continue to improve.

when I'm flaring I would get a fast HR all day then PVCs all night, would get ECGs in hosp that showed them and would see them on my monitor when on telemetry but then my tele was read as no PVCs....yet another point where I felt like I was taking crazy pills. Dont get as many now that my symptoms are stableish

Yep since about a month before my anaphylaxis and all of my MCAS symptoms

Sorry to hear about your troubles. Your body can adjust to the meds but I wouldn't think as quickly as you're describing It's helped me a lot with breathing I can now predict rain by about 10-15 mins as I develop shortness of breath. bizarre

Hilbiligirl just wanted to make sure they're not leaving you on Pred for a long time? what dose? I started on it for anaphylaxis turned MCAS and it fried my adrenals (well, my HPA axis) and I'm having a horrible time getting off of them with reactions flaring everytime I taper When I get off I will max out on every other med possible before trying steroids again the mast cell disease docs don't like using steroids for anything except anaphylaxis No trying to be a wet blanket, it will probably be fine for you , just wanted to share check out my blog if you want more details hope you feel better soon!

I wouldn't take it again that is a sign of allergy which may be to the med or one of its fillers Make sure you have benadryl around. Do you have other allergies? Have you been investigated for mast cell disease?

Yep me too and MCAS