Hi all,
30F I've been dealing with the three issues since Sept 15 of this year. I'm currently taking Zyrtec and Pepcid twice a day as well as vitamin D. I have no allergies that I know of besides penicillin.
I'm waiting to see an allergist or derm until the new year, because I don't want to max my health insurance deductible for this year. I also have been diagnosed with somatoform disorder, and I'm deeply afraid of anything medical. I have a PCP I like, but she's kind of out of ideas and wants to refer me to a specialist.
I'm wondering if perhaps tanning once in a great while might help with these symptoms. My mom has had luck with it with her dermatitis. I know it's a different condition and I'm aware of the risks of tanning. However, might it be worth trying once? Has this worked for anyone?
I just want this to go away. I'm miserable. I don't want to go on an immunosuppressant like Xolair during a pandemic, either.
Any advice would be very much appreciated.
Thank you!
I have been dealing with itchiness, inflamed palm/sole, angioedema (under my eyes, lips, fingers & wrist swollen) since May this year.. the cause is unknown, I don't know what's triggering it, I have done 2 blood tests, all came back normal, vitamin D was pretty low (severe deficiency (7ng/ml) but the doctor said it was unrelated), my kidney function was normal too. I've been prescribed with antihistamines which helped but when I stopped taking them it would come back.. I was wondering if this could be due to a more serious underlying medical issue like a tumour but my dermatologist said it's not that serious and the cause is unknown and you'd waste your time looking for answers and theres no need to get more tests done.
Edit: I don't wear make up or use any sort of products on my face or body. My allergies could happen daily, sometimes every other day, or every few days.
I got my first dose of the Pfzier covid vaccine yesterday and my allergies came back 7 hours later, I didn't have any allergies the day before I took the vaccine.. no uticaria or angioedema.
I just wondered if anyone else suffers with this. I’ve been struggling for the last year, having flare ups every 5/6 weeks. Kept a food diary, stopped wearing make up, threw away all make up brushes and lip make up, took antihistamines… basically I’ve tried everything and it still keeps happening. Of course it took 4 goes at the doctors and a trip to the ER to get someone to finally refer me. The GP laughed at me and said it was a cold sore 🤦🏼♀️Ive the same blood test done 3 times (C1 inhibitor) and just waiting on an appointment to see an immunologist.
Anyway I just wondered if anyone else suffered and what they find helped etc? Thanks in advance!
Both legs are currently having a massive flarw up. Going to the Angiledema clinic very soon. Any advice? What questions should I be asking? Should i advocate for a cortisone shot? My PCP wouldnt help me and rather I suffer. any advice is appreciated.
This might be a long read, I am sorry. But I need advice or someone to tell me they're going through something similar... I am getting really depressed.
I received my first dose of AZ covid vaccine on the 24th March 2021. Localised swelling and redness, this was reported as normal and nothing to worry about. I received my second dose of AZ covid vaccine on the 8th of June, and have had chronic hives and angioedema nearly every day since.
I have been to the emergency department 3 times for throat swelling, and now have epipens, even though doctors weren't convinced it was an anaphylaxis reaction.
I am currently on my 3rd month of prednisone, pending immunologist consultation. GP trialled multiple antihistamines before the prednisone.. none worked. The prednisone does control and decrease the severity of hives. It is frustrating that people keep asking the same mundane questions, "have you changed washing powder, or soaps?" "Eaten anything different?" "Been to a new location?"
I initially didn't realise this may have been covid vaccine related, even though I got small bumps under my breasts 8 hours after the second vaccine, I thought it was sweat rash. It took me a few days and the "rash" spreading all over my body to connect the dots. I am currently on my 2nd GP, as the first one thought I was an idiot and refused listen, or give me anything or even do blood tests. The second one listened, did blood tests and found my thyroid had not been working properly.. which resolved secondarily when I started prednisone.
I would like to note, I am in Australia. I am a nurse and I am no means an "anti-vaxer". I just need some support. I have exhausted all my sick leave over the last 4 months.. I am constantly fatigued. I get the hives regardless of what I do or where I go. The only thing I know for certain is that heat does make them worse.
Food diary revealed nothing. I have a photo gallery since June for the specialist to look at. Has anyone had any symptoms like this? Do you have suggestions or something I can bring up to the immunologist?
If you've made it this far, thanks.
So, I’ve apparently developed a case of chronic angioedema which is producing inflammation all over my body, and this inflammation produces pain (not itchiness).
I’m working with my endo to find out how/if this is connected with my Addison’s and/or hypothyroidism, but thought I’d ask here.
Have any of you experienced something like this?
Hi, I've been suspicious that I might have Hashimoto's for about 2,5 years as I have had weird symptoms (massive hair loss, scalp eczema, major acne breakouts, muscle and joints pains that comes and goes without apparent reasons, fatigue that doesn't go away with sleep, general apathy...) during this period, following a H. pylori infection while I was in West Africa. I treated my acne with spironolactone 75mg and adapalene gel 0.1 and it worked, my skin is now clear. I am still struggling with scalp eczema, but the hair loss seems to be under control. I still lose more hair than what is normal, but it's not too bad.
Last week, I woke up with my face super puffy, and I didn't think anything of it, thought I was just tired, but it didn't go away during the day. The next day, I was very swollen all over my face, especially around my eyes and cheeks. After a few days, a friend of mine who is a doctor told me I should get that checked out at the ER because it was getting somewhat worse every day. So I did. The ER doctor told me I have angioedema, and I asked for some bloodwork to see if I could potentially have mono or something else. The labs showed that my TSH is at 8,64 (high-ish) and FT4 are at 10,8 (low but within normal range). The ER doctor sent me home with a prescription for cetirizine 20mg. I've been taking it for 4 days and don't see anything getting better. Everyday, it seems I'm a bit more swollen under the jawline (full-fledged double-chin that I never had before) and my sublingual salivary glands are super swolen, my tongue a little bit too, and this morning I woke up with weird lumps in my lower cheeks on both sides.
I went to see another doctor yesterday since it wasn't getting better at all with the cetirizine. I asked if we could dig deeper into the TSH levels and check if I may have Hashimoto's and/or if he could give me prednisone to help with the swelling. The doctor said that my TSH levels are irrelevant, that the only thing that matters is the FT4, which is normal, so it's useless to order a full thyroid panel. He also said that there is nothing else to do for the angioedema, to just go home and be patient.
Not sure what to do now... Would help a lot if someone had a similar experience and could share some advice.
Thank you.
Let's look back at some memorable moments and interesting insights from last year.
Your top 1 posts:
After 2 years of wild symptoms, Dr. Zuraw has narrowed this down to HAE type II (c1 inhibitor function low) or acquired angioedema due to autoimmune disease (ANA high, homogenous and speckled pattern).
I burst into (happy) tears today when he told me we are going to start on an incatibant prescription. After two years of being passed from dr to dr, hearing “I’m not sure what’s causing this.. let’s just see if it happens again”, and “you don’t have the markers for lupus so, you’re fine!” - after 32 episodes in the past 2 years, I finally have hope that the answer is on the horizon.
Just wanted to share in case anyone felt such a sense of relief when finally or almost finally diagnosed and wanted to connect. Any advice, encouragement, venting, or anything you wish you had known.. would love to hear from you. There isn’t a single person I know that has been diagnosed, and it would be wonderful to connect even just through one comment. ❤️
Due to being so overwhelmed by 2 years of rapid, severe, episodic edema that involves my eyelids (and sometimes conjunctiva, cheeks, lips, forehead, and nose), my doctor prescribed Zoloft and Gabapentin. We have tapered down the Gabapentin and have been completely off of it for 3 days now… My swelling has returned. While on gabapentin, I did not have a single episode.
There are lots of articles on gabapentin causing swelling as a side effect but little on what swelling mechanism gabapentin could possibly control.
What does this means as far as the root cause of the swelling? This is the first clue as to why my body swells I have ever had.. please, please help me if you can.
Hi all! I wanted to get an understanding of how many of you have had H Pylori and suffer with some form of angioedema? Personally I suffer with idiopathic and have done for 11 years. I found out I had the bacterial infection of H Pylori in 2018 and have been reading some case studies of many angioedema sufferers that have also had it - I’m not saying it is the cause of my particular condition but it could be a factor
Has anyone found anything that works to relieve angioedema/hives on the feet? I’ve (26F) had hives for almost a month now and the angioedema has come and gone in my hands/feet. However, over the last three days, the swollen hives on my feet have not gone down. I can’t even walk without being in so much pain. Has anyone found relief?
I’m on Zyrtec 4x daily and Pepcid 2x daily. I tried prednisone but hated how I felt on it (and still had all of my hives) so I stopped taking it. I’m with a primary doctor and allergist at Mayo Clinic trying to figure this out. We’ve run tons and tons of tests and I am negative for all autoimmune disorders and infections that they could think of to test for. My stomach pain is absolutely horrible and they theorize it’s hives in my abdomen, which makes it impossible to eat without being in massive amounts of pain.
I hate to be such a downer, as I know many of you have dealt with this for MUCH longer than me. I’m really hoping one or more of you may have some advice. Has anyone found something to help with the feet? I’ve tried icing and taking baths and that doesn’t seem to help at all.
I’m planning on seeing a dermatologist next. If I make it to the six week mark, my primary doctor at Mayo will send me to more specialists (I’m thinking rheumatology, gastroenterology, etc.). She also said that’s when we could try Xolair, but if there is something causing this, I want to find out what.
Thank you SO much for any advice you could give me.
Apologies as I know this has been asked before in the last couple months, but since a large number of people are getting vaccinated now I thought I would ask again and see if there are any new/different answers.
For people with CIU, how did your vaccination go? Did you receive any special instructions from your doctors? Did you have to get a specific vaccine? Did anyone have any reactions?
I'm in Canada and was advised by my internal medicine physician to wait to be vaccinated until I've been on Xolair for about 5-6 months (which will be June-July) and made a note in my file that the Pfizer vaccine was likely the best option for me and that I should also get vaccinated in a clinical setting and take some extra anti-histamines the day before.
For some personal context: I've had CIU for about 5 years but had a particular severe flare up in December 2020 that my internist thinks was possibly triggered by a combination of stress and a new medication I was given for an unrelated infection (I had 4 anaphylactic reactions around Christmas and was only able to calm things with a few rounds of steroids). I "normally" had pretty intense daily hives and get swelling in my cheeks, eyes, and lips. Since I've been on Xolair it's improved a little bit and I still take 2 20mg Blexten daily.
I'm really really keen to be vaccinated but I'm also a bit nervous and interested to see if anyone else was given special instructions similar to mine.
In our Question 1 article, we discussed Berotralstat, AKA Orladeyo, as Biocryst ($BCRX)’s newly approved oral drug for the HAE market. In a future mega-post in the next 2-4 weeks, I will discuss the competitive HAE treatment landscape, the different treatments, their efficacies, the estimated number of patients taking each of them, their side-effect profiles and how Berotralstat compares to each, using primary research articles as my sources not summaries of press releases or analyst reports like I see sometimes used, so that I can come to a more precise and realistic ultimate market share for this drug using published data.
But in this post, I’m going to briefly address another group of patients that Berotralstat will likely soon be applied to by treating physicians (beyond the uses I touched on previously). These are the Acquired Angioedema (AAE) patients.
But first to give some more background, both for this post and for the future mega-post, Hereditary Angioedema is an autosomal dominant disease, mostly caused by mutations in the SERPING1/C1-INH gene. Mutations in this gene lead to either low levels of the protein (Type 1) or abnormal poorly functioning protein (Type 2). To get technical, one third of the mutations in SERPING1 are missense mutations, another third are frameshift mutations and small indels, and the remainder are gene rearrangements, splice site mutations, or nonsense mutations. A quarter of these Hereditary Angioedema SERPING mutation-carrying patients are spontaneous, meaning that they did not inherit the mutation from their parents, which often results in an even longer time before their diagnosis is made, as they get misdiagnosed as urticaria or allergic angioedema patients. Finally, mutations in three genes that I’m so far aware of also cause Hereditary Angioedema—Factor 12, Plasminogen and Angiopoietin. This list of other genes will probably continue to grow, as there are still many Hereditary Angioedema patients without known mutations. For those interested in reading more: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7063419/
Acquired Angioedema (AAE) is less common than Hereditary Angioedema, but numbers are not clearly known. A good early estimate from one study was that AAE represents at least 1/10 of HAE (https://pubmed.ncbi.nlm.nih.gov/20667117/), but I’ve seen numbers suggesting 1/8, but for this exercise I will use 1/1
... keep reading on reddit ➡Anyone else get random angioedema? My daughter 15, gets it at least once a year. Diagnosed with POTS about 3 months ago. Just reaching for possible answers. At ER now
I’ve been suffering from idiopathic angioedema for roughly 6 years. It started out mild and I thought it was just cellulite. Today, I’m swollen every day. It’s concentrated in my saddlebag region, but if I break my diet I’ll get swelling throughout my body and especially in my face. It’s tied 100% to histamine intolerance. On the biphasic low histamine diet, I get relief and my face looks normal again, but I still have swelling in my legs because I’m eating some leftover meat I prepared a day or more ago (because life is hard enough). Swelling is also made worse by heat and exercise.
I’m waiting on the results of my breath test, but I’m sure I have methane SIBO since I have constipation and bloating as my two main struggles. My GI MAP showed high levels of pseudomonas (gram negative bacteria) and blastocystis h. (parasite that is controversially treated vs not treated by various docs).
Has anyone else experienced swelling from histamine intolerance/“food allergies”? Have you had luck with your sibo treatment protocols?
I’m desperate to get back to living a more normal life where I’m not afraid to eat food out at restaurants and get to enjoy chocolate, soy sauce, alcohol and caffeine/coffee again.
The NHI price listing triggers a $15 million milestone payment from Torii to BioCryst. In addition, BioCryst will receive tiered royalties ranging from 20 percent to 40 percent of Japanese net sales.
Besides prednisone, is there anything that reduces the swelling of lips/cheeks? Woke up looking like a chipmunk kardashian, but don't want to take prednisone as it makes my hives worse.
I was recently diagnosed (34F) with Hashimoto’s. The diagnosis came after about 3 months of trying to find the reason I had acute (which became chronic) urticaria and angioedema, which started suddenly in mid-October. Oddly, those have been my only symptoms.
In October my TSH was 2.85. By mid-Dec it shot up to 10.73 (normal T3/T4). Mid-Jan TSH 13.98 (T3 normal & T4 76 just below the reference interval floor of 78).
Now I’m on 50mg of levo daily. How is my doctor supposed to know if the dosage is right if I don’t have any symptoms that need to be controlled? (Urticaria and angioedema have calmed down now.) I wonder if 50mg is too high because my doc said he usually starts patients at 25mg, but an internist recommended I go up to 50. I’ve been on levo for 3 weeks without noticeable side effects. How do you work with your doc to find the right dosage?
Hey all. After 2 years of constant reactions (hives, body welts, breathlessness, swollen tongue etc) I got some answers a few weeks a go. The doctor said I have acquired or allergy angioedema. I had some allergy tests and it came back saying I have a low allergy to cats and grass and a high allergy to dust mites. More tests need done as nsaids of any kind also cause severe reactions as well as random other stuff including any sort of birth control.
The only thing I'm questioning about this is that I don't really get a swollen face when it happens so that kinds of goes against it being any kind of angioedema. I've been prescribed antihistamines (2 kinds) that I've to take daily but honestly guys, I'm struggling. They make me so tired and foggy that I don't think I can take them all the time for much longer. I have a young child to look after and a part time job that requires me to be quite focused on numbers.
I have an immunologist appointment in 10 days time and I'm just wondering what I should be saying in this appointment? I also have a low folate count so I have to take folic acid daily. I was never allergic to anything before so I'm wondering why all of a sudden since I turned 30, I'm allergic to things? Maybe I was always allergic but never had reactions? Is there any illness that would suddenly make me allergic to a lot of things? The doctor knows way more than I do so I'm going to assume I do have allergy or acquired angioedema but there's this feeling I have inside that it's not that. I've only had these issues for 2 years.
Thank you!
Started: last week of August. Remission (?): 10/14
I (27F) spent two months with hives and later angioedema. I couldn't sleep through the night because the itching covered my body. Daily, I woke up scared to see how my face and skin had transformed during the night and turned me into something i didn't recognize. I would wake up, reach for my phone, snap a photo, and take more throughout the day as the swelling went down and the hives moved. I documented almost every single day.
After getting lab work done, my allergist told me that it's autoimmune but that they didn't detect any other markers that would suggest another underlying disorder.
After taking a week's worth of prescribed prednisone and pepcid, the hives became fainter and sparse until they stopped about two weeks ago. Then I noticed that the angioedema became less severe with each passing day. One thing i noticed that helped: sleeping on my back instead of my side or stomach reduced the pressure on my face and thus the swelling.
Now, only a small portion of my lip will swell a little randomly, but it's fixed by taking a single benadryl dose and it's gone within the hour. I also carry Epipens with me now, because, even though I never had trouble breathing, I did feel faint once after an unusually hot shower towards the beginning of my outbreak caused disorientation and extreme fatigue.
My relationship ended over this. My roommates rarely saw me leave my room because I was so anxious and embarrassed to be out in the open, and when i did it was straight to the bathroom with my head ducked. I stopped turning my camera on for work Zoom meetings. I'm cautiously optimistic about this remission because i read a lot in this sub about how hives have returned with a vengeance, but I'm starting to feel like myself again.
I'm starting to date. I keep the door to my room open and sometimes eat dinner at the table with my roommates. I'm back to being an engaging colleague.
Does balance eventually come the further away i get from this episode? Will I one day wake up and not instinctively reach for my phone to check my face in the morning, or not flash the light on in the middle of the night to make sure that itch on my leg is a hive? If you have any advice, I'd love to hear it 💕
Due to being so overwhelmed by 2 years of rapid, severe, episodic edema that involves my eyelids (and sometimes conjunctiva, cheeks, lips, forehead, and nose), my doctor prescribed Zoloft and Gabapentin. We have tapered down the Gabapentin and have been completely off of it for 3 days now… My swelling has returned. While on gabapentin, I did not have a single episode.
There are lots of articles on gabapentin causing swelling as a side effect but little on what swelling mechanism gabapentin could possibly control.
What does this means as far as the root cause of the swelling? This is the first clue as to why my body swells I have ever had.. please, please help me if you can.
