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anaphylaxing

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Posts posted by anaphylaxing

  1. 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.

  2. 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

  3. 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

  4. 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!

  5. 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

  6. 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!

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