u/germanshepherd_mom

I’m terrified because I have side effects to everything. I couldn’t tolerate Rhapsido which everyone else seems to do so well with. Dupixent made my hives worse. I do have a high IgE level which supposedly makea me a good candidate for Xolair. But I’m still scared. I’m scared of anaphylaxis and not being able to tolerate it. This feels like my last hope and I will be devastated if it doesn’t work like I hope it does.

I was the higher earner. My income accounted for 63% of our household income. And the job market is f*cked. I’m grieving so much. My severance has ended. This is really hard. We can’t live off of this. I’m on unemployment (thank goodness) but it is just a pitiful amount. We are going to struggle and I’m scared because o have a lot of health issues and bills from that. I hate that this is a reality for so many.

Can’t believe this has been going on this long. Apparently people randomly recover? I just feel like that will never happen for me. hives have not shown any improvement in this time and missing or being late on a dose of my 4x antihistamine dose cause things to spiral immediately. Luckily they do respond just enough to high dose of antihistamines (including Pepcid) to function but I still get them daily. The dermagraphism is the worst part as that seems to be the most stubborn. I can’t open jars, rub any body part on anything, or so much as wear clothes that are barely even tight without getting itchy hives-like rashes. Failed Rhapsido due to awful side effects and Dupixent made my hives WORSE. A few weeks until I trial Xolair. Honestly so scared I’ll react bad or have bad side effects just like the other 2.

This is so dumb. It has taken the joy out of so many activities I used to love or not even think twice about. Now I have to think about every single task I do and if it will break me out in hives. I miss my life before I even knew what this condition was.

Hey all, I got my PFO closed with the GORE device a month ago. The procedure went really well and only had very minor complications after. I hadn’t had any issues with my heart rate since, but as of 2 days ago I am having the most annoying issue where there are times that any small movement causes a big drop in my heart rate along with pounding/palpitations. It goes to like 50 bpm which is incredibly low for me. I don’t think in the 5 years of having fitness watches that it has ever gone that low. My resting sits in mid 70s, sometimes 80s. It has been like that my whole life. It doesn’t last very long before it jumps up to 90, then back to baseline. It happens over and over and it’s extremely annoying and uncomfortable.

My doctor has been contacted and we are monitoring. I just now gave another update to him because After yesterday my chest feels like there is pressure and just generally uncomfortable. Plus I’m SO fatigued. As if my heart has been working too hard. I know this can happen but it is the worst. And it freaks me out so much. Has anyone else dealt with this? I always see stuff about high heart rate but not necessarily with the lower. I will likely go get it checked out regardless so not looking for medical advice obviously. Just wondering about others’ experiences.

I got laid off 2 months ago and had probably one of the best and most cushy jobs for someone who is a level 1. It was full time WFH but I barely ever had to work a full 40 hours as I was salary and my manager was so beyond chill. Even despite that, I had been working full time with no breaks between full time jobs for 7 years and the burnout was getting so bad. I was a shell of myself. Could not ever feel relaxed. I developed an autoimmune condition 6 months ago honestly very likely due to feeling such extreme stress simply from trying to exist. My husband’s job isn’t even close to enough for us to be ok so I’m trying to find a job and I’m just so upset about facing full time work again. I unfortunately need to work full time in order for us to not struggle financially and while I would say I’m blessed to be able to function just enough to hold down a job, it is going to come at a very high cost. I already know my relationships are going to suffer. I’m basically not going to be able to commit to literally anything outside of working because of the burnout. I’m thinking of trying out a hybrid role (if I can get one, fully remote will be impossible to find again I’m sure) and just praying that the combo of flexibility with a couple days at home plus the structure of a few days in office might be the key to what I need ??? I made pretty good money and was able to afford all of my healthcare costs (which are HIGH because of my conditions.) I wish our well being didn’t have to come at such a cost. Life feels really hard and I hate having this disability more than anything. Would love to hear how those of you who have to work full time are managing your life 😅

Just wanted to share my experience as I was beyond nervous for it. Got it done yesterday and had no issues! It was conscious sedation but i don't remember anything. They put in the GORE device. So far my only side effect is incision site pain that is kind of affecting my nerves in my legs too which I called about and they said that can happen. I am definitely super tired and walking/going
to the bathroom kind of sucks with the groin incision but I’m really happy it all went well and that recovery has been ok so far.
A bit nervous to try coffee after this as I've heard it can make you have heart palpitations. decaf was fine today!

I (30F) have my PFO closure on Tuesday and I’m terrified of complications. I’m always that person who has complications with everything medically. I don’t have any heart issues besides the PFO and it’s really small, only 1.5 mm in diameter and 3 mm tunnel, but I had a cryptogenic stroke so they suggested the closure since I have zero other risk factors. I’m super scared of having chest pains/tightness and palpitations or something worse after the surgery. I keep reading about people’s uncomfortable-ness in their heart/chest many weeks or months after. I’m already dealing with chronic idiopathic hives & digestive issues (diagnosed with MCAS) daily and I cannot even begin to think about dealing with more symptoms. 😭😭😭 I obviously don’t want to have another stroke but I’m pretty nervous and really don’t even want to do it. I am wanting to try Xolair for my mast cell and chronic hive issues but there is a very small risk of cardiovascular issues with Xolair so I don’t want to take it now but also it scares me thinking about taking it after surgery. Even the 3 months after like my allergist recommended. Anyways, I am just stressed and ranting mostly.

I took Dupixent 8 days ago and was put on a short course of steroids after it made my hives and itching even worse. Steroids have never helped in the past but they actually did help a bit this time and I’m guessing it’s because it was worsened by medication vs the random unknown reason I get hives.

Anyways, I am terrified to take it again and I’m wondering if anyone else has had reactions to biologics and how long it took to go back to baseline?
(Baseline still sucks but it’s better than this…)

My hives and dermographism are worse after my initial shot 2 days ago. ): I pretty much started having this 30 mins after taking the loading dose. (So 600mg). Not sure if I should take it again or if things could improve in the future? Any experiences with Dupixent welcome. I’m sad.

I’m absolutely devastated and can’t stop crying. My pressure hives (dermatographism) is so much worse right now, like ANY touch and I get the itchiness/rash/hives and it was already bad before. This is after getting the loading dose of Dupixent a few hours ago. I’m so sick of living like this. I feel like I can’t do any activity at all now. I’m so scared that this drug isn’t going to help me like it is supposed to. I am so upset. I honestly just want to d*e at this point. The fact I am doing worse right now than I was is sending me over my limit. I can’t fucking do this

I’m really scared because I swear I always have side effects to everything. My allergist had me on Rhapsido but I had awful side effects from it. Was going to do Xolair but I have to wait until after my surgery for a PFO closure in my heart due to some rare side effects Xolair could cause. Dupixent is the safer route for me until then. But I am so miserable with the hives. Despite Pepcid and 4x the antihistamine dose alternating Allegra/Zyrtec, they do still break through. I don’t want to get my hopes up too high though. Truly this has been the worst year of my life. I’m desperate for it to help me but I worry it won’t. Or that I’ll get bad side effects. 😞

Has anyone tried an elimination diet and found something to be contributing to their hives? I am so desperate and hate the thought of doing this but I just want to rule out everything I can. And yes I am aware that many times people never find the cause. But after many months of this I’m still wondering if I could be missing something.

I’m so miserable and I miss my life before this took over it. 😔

Hi all, newly diagnosed here.
Basically it all went south 4 months ago, starting getting hives on my hands which then in a matter of days spread to everywhere on my body. I believe getting a respiratory virus shortly after they started caused things to get even worse. I had minor MCAS symptoms for years before this, looking back. But nothing like this. My hives come and go daily and so much as a tiny scratch or clothing brushing my skin causes them, along with many other things. And also randomly. I also have had the severe digestive system issues with it too.

I was diagnosed with high levels of NMH and leukotrienes in urine test. My tryptase in a flare was not high enough for diagnosis but was higher than my base level, which is why my allergist wanted to try the urine test. This all was of course after an allergy panel where I didn’t have any allergies (besides Timothy grass which I am never around) & removed every frickin product or trigger I could possibly think of from my life.

I failed Rhapsido because of the increased bleeding and it weirdly causes major hand and foot pain for me. I am so bummed because it controls things so well for me. I am on a high dose of antihistamines + pepcid and it’s not enough. I have cried more in the past 4 months than probably the past 10 years . Life feels like hell.
Xolair will become an option for me once I get a surgery end of June for an unrelated issue. In the meantime I am truly suffering.

I know my allergist mentioned I could try cromolyn but I’m terrified of weight gain as I’m already super self conscious of my body’s changes throughout this illness. Would love to hear others’ experience.

Also has anyone found something else causing their MCAS? I know sometimes it is secondary to other things.

First timer. Craziest part is I got laid off by my manager’s manager before my manager even knew they were laying me off. Then he also got laid off. “AI Restructure” was the reason. 10% of the company. Absolutely brutal. I am a product manager at a fintech company and been there for 4 years. Terrified of not finding another job in time for running out of severance but will be trying to make the most of a summer off. Thats all you can really do. 🤷🏻‍♀️

I am currently dealing with the anger of affordable health insurance being tied to employment. I have several health issues, need heart surgery soon (due to a defect I was born with), and have an autoimmune disease. I’m grateful I get insurance through September but even the thought of possibly having to get COBRA ($$$) or shitty marketplace insurance stresses me out so much. All of it pales in comparison to the insurance I have now which is really really good. Best I’ve ever had. That is a major loss when you have health problems that you have very little control over. Like, I hit my out of pocket max within 2 months of the year. So with many other insurances I would be in serious debt if not for what I have. Scared that is what I will have to face in the future. Some employers have such shitty health coverage. And you literally have no idea what the insurance will be like until you get hired. I’m so envious of people who don’t even have to think about that.

Alright, I’ve posted about this before as potentially being a problem with Rhapsido on the regular dose (so 25mg twice a day) and both times I tried to go up from 25mg once to twice I noticed the pains in my hands and feet. So I decided to stay on 25mg and then eventually quit the med due to heavy menstrual flow. Ever since quitting, like a day or two after I’ve had so much nerve pain (at least that’s what it feels like - it’s is kind of a stabbing, stinging sensation) in my hands and feet, it is now mostly constant, and I don’t frickin understand why. I’ve been off it for 2 weeks and it’s not even a complication listed at all. I didn’t have this at all before starting it and I was only on it for maybe 3 weeks. 😭 I’m so frustrated. Not only did I fail a medication that helped my hives so much but I have a new fucking symptom. ): I’m so sad. And of course, freaking out that I have another unsolved mystery.

All my blood tests are normal too. 🙄 and I’ve done a LOT.

I’ve already had to do so much grieving of how life was before I broke out in hives everywhere all of the time. This adds another level. I have been crying every single day multiple times. 😑