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Post by heckofagal on Mar 26, 2025 17:00:11 GMT
Just looking for some advice that any of the peas would like to offer about fighting off hives.
My 28 year old DD was on an out of state work trip a month ago when she started to get hives. Started off a few small ones on her arms. She's gotten a few small ones before, but they always went away fairly quickly. If not within a few hours, definitely by the next day. I'm not sure what set them off before, but I do remember guinea pigs and/or the hay that was fed to them being a culprit. (She did start a new birth control a month earlier that we later thought might have been the culprit. But she stopped it and there has been no change.)
She came home and they continued to get worse and that weekend a PA friend of hers prescribed a steroid to help, in addition to the Benadryl Zyrtec she had been taking. Initially it did help, but by the following weekend the hives were spreading even more and itchier and some were bigger than a dinner plate. She was pretty miserable and had taken her last dose of the steroid so she went to urgent care. They gave her a Benadryl IV with famotidine that offered immediate relief and sent her home with another steroid script. Dr told her to take the antihistamines round the clock. Hives more manageable at first but by the end of the week they were horrible again. DD who has severe health anxiety was afraid of going into anaphylaxis or that this was a sign of cancer or lupus or something serious. Had her first full fledged panic attack that Friday. Thought she was going into anaphylaxis or having a heart attack. Talked her through it. That Sunday she was with her friend the PA who prescribed the first dose of steroids. DD was having hand tremors and saying she felt like she got hit by a bus and just didn't feel right. PA friend asked how high the 2nd dose of steroids was and if there was a taper, and the answer was no. So friend explained she was having steroid withdrawal symptoms.
We got her in to see an allergist last Friday. Hives seemed less severe so I thought we were nearing the end of this ordeal. Dr. said he thought it was probably autoimmune in nature. Confirmed he was not concerned about her going into anaphylaxis or that she had cancer. Told her to take 2 Zyrtec in morning and 2 at night and to keep up with the famotidine though he did not think that was much help. Said he would call in a script so that she could have steroids on hand to take on days when they became severe, and sent her for bloodwork.
Sunday she got the first hive on her neck, but that one pretty much subsided by the end of the day. Monday she got the first 2 on her face. Meltdown ensued. Yesterday she awoke with her eyelid partially swollen shut. That was better after a few hours but then she had more on her face and on her scalp and the back of her neck. She did take more steroids. Today when she woke up they seem to be all over her torso and lower extremities again and very itchy again.
The doctors office is keeping in close contact with her and having her check in every few days. I'm just wondering if any of you have dealt with a bad case of hives that persisted for a month or 2 and then just went away? Or if any of you are dealing with chronic hives that have any tips for her?
This isn't sitting well with a single 28 year old girl with health anxiety and depression!
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Post by Merge on Mar 26, 2025 17:08:43 GMT
Hmmm, I've had chronic hives to some degree for over 20 years. No known cause. They started after a bout of mastitis when I was nursing my youngest. The doctor at that time said sometimes a bad infection like that can set off an autoimmune response, but I tested negative for whatever the autoimmune markers were. The zyrtec/famotidine combo would have been my suggestion - but that has always worked for me and it seems not to be for your daughter. I would encourage her, though, to keep taking that combo religiously for a week or more. My understanding is that the meds have to build up to a baseline amount in your system in order to be really effective.
Over the years, mine are much less severe and I only take a daily Xyzal, and that takes care of it. Hopefully that's of some reassurance. I hope she gets some relief soon!
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Post by pantsonfire on Mar 26, 2025 17:19:33 GMT
Have her allergist look into MCAS - mast cell activation syndrome.
It could also be anxiety hives. Cool compresses, cool bath with no soaps, topical creams and lotions as well as figuring out the stressor.
They should also do skin prick testing. She will need to be off all meds for 2 weeks
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Post by piebaker on Mar 26, 2025 17:21:39 GMT
Is she taking ibuprofen? We thought my daughter's hives were poison ivy or poison oak, but they were caused by taking ibuprofen for pain from a sports injury.
She cannot take ibuprofen, only acetaminophen or aspirin.
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Post by pantsonfire on Mar 26, 2025 17:21:56 GMT
Also did anyone run labs?
Could she have Mono?
There is a rare form of Mono that causes huge hives all over the body
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Post by heckofagal on Mar 26, 2025 17:29:02 GMT
Hmmm, I've had chronic hives to some degree for over 20 years. No known cause. They started after a bout of mastitis when I was nursing my youngest. The doctor at that time said sometimes a bad infection like that can set off an autoimmune response, but I tested negative for whatever the autoimmune markers were. The zyrtec/famotidine combo would have been my suggestion - but that has always worked for me and it seems not to be for your daughter. I would encourage her, though, to keep taking that combo religiously for a week or more. My understanding is that the meds have to build up to a baseline amount in your system in order to be really effective. Over the years, mine are much less severe and I only take a daily Xyzal, and that takes care of it. Hopefully that's of some reassurance. I hope she gets some relief soon! @merge do you still have hives everyday or does the Xyzal keep them mostly at bay with just some flare ups? |
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Post by Merge on Mar 26, 2025 17:34:57 GMT
Hmmm, I've had chronic hives to some degree for over 20 years. No known cause. They started after a bout of mastitis when I was nursing my youngest. The doctor at that time said sometimes a bad infection like that can set off an autoimmune response, but I tested negative for whatever the autoimmune markers were. The zyrtec/famotidine combo would have been my suggestion - but that has always worked for me and it seems not to be for your daughter. I would encourage her, though, to keep taking that combo religiously for a week or more. My understanding is that the meds have to build up to a baseline amount in your system in order to be really effective. Over the years, mine are much less severe and I only take a daily Xyzal, and that takes care of it. Hopefully that's of some reassurance. I hope she gets some relief soon! @merge do you still have hives everyday or does the Xyzal keep them mostly at bay with just some flare ups? It keeps them at bay for the most part. My hives are dermographic, meaning they appear wherever my skin is rubbed or scratched. Once in a while I have one pop up like that but not very often. And if I forget my meds, I'm sometimes starting to itch a bit by the next morning.
But there were years of 2x daily zyrtec and zantac first. |
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Post by Merge on Mar 26, 2025 17:36:34 GMT
Have her allergist look into MCAS - mast cell activation syndrome. It could also be anxiety hives. Cool compresses, cool bath with no soaps, topical creams and lotions as well as figuring out the stressor. They should also do skin prick testing. She will need to be off all meds for 2 weeks I never did skin prick testing for that reason. Two weeks off meds would have been a nightmare. |
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Post by heckofagal on Mar 26, 2025 17:37:18 GMT
Have her allergist look into MCAS - mast cell activation syndrome. It could also be anxiety hives. Cool compresses, cool bath with no soaps, topical creams and lotions as well as figuring out the stressor. They should also do skin prick testing. She will need to be off all meds for 2 weeks Also did anyone run labs? Could she have Mono? There is a rare form of Mono that causes huge hives all over the body Her allergist did mention MCAS. He ran bloodwork, but I'm not sure exactly what for. He mentioned red meat allergy, which he did not think was the case, but it was easy to treat if it was. And I know another was something about histamine as the lab said insurance might not cover it. I did wonder if they were stress induced. She broke up with a boyfriend 2 weeks before the trip and it crushed her. And of course the stress of having the hives has been ongoing. She will absolutely not be off meds for 2 weeks for a while so any skin prick testing will not be happening at this point, maybe later. Now you got me wondering about Mono as she did sleep the weekend away I think the weekend before she left for her trip, and then the weekend after but I thought the after was because she just started all the antihistamines and at that point I think it was just Benadryl. She's also been more tired since this all started but I thought that was from the depression this whole fiasco has brought on. |
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Post by heckofagal on Mar 26, 2025 17:43:40 GMT
Is she taking ibuprofen? We thought my daughter's hives were poison ivy or poison oak, but they were caused by taking ibuprofen for pain from a sports injury. She cannot take ibuprofen, only acetaminophen or aspirin. She did break a couple bones in her foot back in January that I think she took Naproxen for but that was quite a while ago. Her foot did start to hurt again after the trip but she was reluctant to take any more Naproxen because she read it can cause hives as well, but she did not have aceteminophen. |
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Post by arielsmom on Mar 27, 2025 12:58:51 GMT
I battled chronic hives for 3 years. Dr did a punch biopsy in the middle of a patch. Tests came back to a food dye for me. I do have a steroid ointment to assist with itching if I have a breakout. Hope she gets some relief soon.
I also get hives that come and go from lace edges, cold, some fabrics, etc, but they are nothing like the allergic hives, which lasted for months.
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Post by heckofagal on Mar 27, 2025 13:20:18 GMT
Well not all of her bloodwork is back but apparently her IGE levels qualify for Xolair. Waiting on the rest of the bloodwork before deciding next steps.
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Post by pantsonfire on Mar 27, 2025 14:02:50 GMT
Well not all of her bloodwork is back but apparently her IGE levels qualify for Xolair. Waiting on the rest of the bloodwork before deciding next steps. So it's super high? I hope they run more labs and tests to rule out Autoimmune conditions. I hope the injections help her!! |
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Post by heckofagal on Mar 27, 2025 14:06:59 GMT
Well not all of her bloodwork is back but apparently her IGE levels qualify for Xolair. Waiting on the rest of the bloodwork before deciding next steps. So it's super high? I hope they run more labs and tests to rule out Autoimmune conditions. I hope the injections help her!! I don't know any of her numbers, but I've asked her to get copies of her labs when they are all back. |
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peamused
Shy Member
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Post by peamused on Mar 27, 2025 21:33:34 GMT
I had that same exact issue. Daily hives, some welts being the size of my hand, my eyes swollen shut. The allergist did bloodwork and chalked it up to an autoimmune issue. She did not clarify a name for it. She suggested a regimen of otc meds and a monthly allergy shot for $300. I can't afford that so I did zyrtec. It never got better so I did a lot of investigating. I found that any food with high amounts of histamine would trigger the hives. I researched low histamine diet and did that for months. It helped but not 100%. I did more research and found an Anti-Inflammation diet. There are tons of foods to avoid. SO I did that for months. It helped but not 100%. Did more research and stumbled upon Candida Overgrowth. I did a Candida cleanse diet. That fixed it. However, it still isn't gone 100%. I get the occasional hive and swollen eye. But it's nothing like what I used to endure. I feel a lot of compassion for your daughter. It's a very depressing issue to deal with. Especially because most MD's do not subscribe to fixing your diet to fix an illness. It's been years but now I'm able to eat almost anything, as long as I spread out the histamine foods or anything with sugar. I'm happy to talk more if you're interested.
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Post by pantsonfire on Mar 27, 2025 22:03:58 GMT
I had that same exact issue. Daily hives, some welts being the size of my hand, my eyes swollen shut. The allergist did bloodwork and chalked it up to an autoimmune issue. She did not clarify a name for it. She suggested a regimen of otc meds and a monthly allergy shot for $300. I can't afford that so I did zyrtec. It never got better so I did a lot of investigating. I found that any food with high amounts of histamine would trigger the hives. I researched low histamine diet and did that for months. It helped but not 100%. I did more research and found an Anti-Inflammation diet. There are tons of foods to avoid. SO I did that for months. It helped but not 100%. Did more research and stumbled upon Candida Overgrowth. I did a Candida cleanse diet. That fixed it. However, it still isn't gone 100%. I get the occasional hive and swollen eye. But it's nothing like what I used to endure. I feel a lot of compassion for your daughter. It's a very depressing issue to deal with. Especially because most MD's do not subscribe to fixing your diet to fix an illness. It's been years but now I'm able to eat almost anything, as long as I spread out the histamine foods or anything with sugar. I'm happy to talk more if you're interested. Night shade list. Dd's and my allergist immunologist put us on it when we were diagnosed with Dysautonomia and POTS. We had to completely stop eating any high histamine food for some time. Then we could add one back very slowly, 1 at a time to see amount and trigger. For DD blueberry, acai berry, strawberry, bell pepper, and pineapple cause a reaction with any amount. So those are off the table. We both have to limit tomato and tomato products. All of this led to MCAS which has been Rheumatologist and Genetics along with Immunologist. Dd had labs and GI screens for GI conditions but they were all clear. There are so many reasons beyond true allergies for hives. It can be frustrating to find the root cause but don't give up!! |
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Post by kachilyn on Mar 27, 2025 23:51:43 GMT
Not hives - but chronic inflammation and swelling and any bug bites look like baseballs sticking out of my leg. Mostly undercontrol at the this point with 2x day claritin 10mg/pepcid 20mg. Allergist had me doing this 4x a day during the first flares, now I am good with 2x. The lip swelling was the scariest for me and at some points required steroids to bring it down. I started allergy shots 3.5 years ago and it's made a big difference. I'm allergic to everything with pollen. Foods high in histimine trigger it for me as well, especially if I am stressed, tired or on the edge of getting sick. I can handle it in the morning but not by end of day. I'll get facial blushing and heat as well. It's auto immune for me. Likely MCAS but the first treatment for that is the claritin/pepcid combo I already take. Lots of empathy for her - but it will get better! A good allergist will help a lot.
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bethany102399
Pearl Clutcher
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Post by bethany102399 on Mar 28, 2025 16:16:06 GMT
I never did skin prick testing for that reason. Two weeks off meds would have been a nightmare. I have a friend who has had to do this twice to do the punch test for assorted allergies and it was awful for her. She wound up carrying cold compresses on her person as her sinuses were so swollen she couldn't breathe normally. |
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Post by heckofagal on Mar 28, 2025 16:30:43 GMT
Not hives - but chronic inflammation and swelling and any bug bites look like baseballs sticking out of my leg. Mostly undercontrol at the this point with 2x day claritin 10mg/pepcid 20mg. Allergist had me doing this 4x a day during the first flares, now I am good with 2x. The lip swelling was the scariest for me and at some points required steroids to bring it down. I started allergy shots 3.5 years ago and it's made a big difference. I'm allergic to everything with pollen. Foods high in histimine trigger it for me as well, especially if I am stressed, tired or on the edge of getting sick. I can handle it in the morning but not by end of day. I'll get facial blushing and heat as well. It's auto immune for me. Likely MCAS but the first treatment for that is the claritin/pepcid combo I already take. Lots of empathy for her - but it will get better! A good allergist will help a lot. My youngest DD has issues with mosquito bites swelling up like crazy. I never thought about allergy shots for that. She had allergy shots years ago that really helped her with seasonal allergies and pets and then she just stopped. We might need to look into this again. |
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Post by pantsonfire on Mar 28, 2025 16:47:02 GMT
I will be having my 3rd skin prick test coming up. Just foods since I have developed more and have low IgM. For myself and dd it was the best decision because it told us what we were allergic to, how severe, and what treatment is best for the allergies. To me that is the best reason to do it. Also you start to look at products you use.
Dd ended up at Children's during Covid for this horrible rash with huge hives on her legs, shoulders, arms. They burned and she couldn't touch them. They ran labs thinking it was specific things. Then biopsies (another thing I recommend) and it ended up being her lotion. The biopsy came back contact dermatitis and thankfully nothing connective tissues related. Anyways seem and allergy immunology had us go through anything that touched her skin to look for any of her allergies. Well her lotion added soy. We didn't know. And that is a moderate allergy for her. She had been using the lotion for years and they changed the formula. 2 weeks out the hives and rashes were gone. And have never come back as we now look through all lotions, deodorants, shampoos, conditioners, body washes, soaps, etc.
It was bad being off the meds. For sure. Especially since we did it during prime allergy season. But it allowed allergy immunology to know what meds would be best and at what doses.
Once I got put on a regimen my symptoms greatly improved. And now I'm not on 365 days of meds. I start right before spring and fall.
We can not do shots because of how severe the allergies are. And for myself because of how low IgM is tied to allergies. And for DD because of her primary Immunodeficiency.
Knowing the things your body doesn't like in one shot instead of withdrawal and bringing it back saved us time and sanity. We got it in one day and from there could make the changes.
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Post by pantsonfire on Mar 28, 2025 16:48:42 GMT
Not hives - but chronic inflammation and swelling and any bug bites look like baseballs sticking out of my leg. Mostly undercontrol at the this point with 2x day claritin 10mg/pepcid 20mg. Allergist had me doing this 4x a day during the first flares, now I am good with 2x. The lip swelling was the scariest for me and at some points required steroids to bring it down. I started allergy shots 3.5 years ago and it's made a big difference. I'm allergic to everything with pollen. Foods high in histimine trigger it for me as well, especially if I am stressed, tired or on the edge of getting sick. I can handle it in the morning but not by end of day. I'll get facial blushing and heat as well. It's auto immune for me. Likely MCAS but the first treatment for that is the claritin/pepcid combo I already take. Lots of empathy for her - but it will get better! A good allergist will help a lot. My youngest DD has issues with mosquito bites swelling up like crazy. I never thought about allergy shots for that. She had allergy shots years ago that really helped her with seasonal allergies and pets and then she just stopped. We might need to look into this again. Skeeter Syndrome. I have it. And my low IgM makes the reactions way worse. I have to take Zyrtec 2x a day during mosquito season and then was given an Rx for a specific topical med to use with instructions of when to get antibiotics. |
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peamused
Shy Member
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Post by peamused on Mar 28, 2025 20:10:19 GMT
Not hives - but chronic inflammation and swelling and any bug bites look like baseballs sticking out of my leg. Mostly undercontrol at the this point with 2x day claritin 10mg/pepcid 20mg. Allergist had me doing this 4x a day during the first flares, now I am good with 2x. The lip swelling was the scariest for me and at some points required steroids to bring it down. I started allergy shots 3.5 years ago and it's made a big difference. I'm allergic to everything with pollen. Foods high in histimine trigger it for me as well, especially if I am stressed, tired or on the edge of getting sick. I can handle it in the morning but not by end of day. I'll get facial blushing and heat as well. It's auto immune for me. Likely MCAS but the first treatment for that is the claritin/pepcid combo I already take. Lots of empathy for her - but it will get better! A good allergist will help a lot. Have you ever used Zyrtec? Maybe I should try Claritin because i get the lip swelling and nothing can get it down. How often do you get allergy shots? |
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Post by dewryce on Mar 30, 2025 20:11:15 GMT
Oh poor thing, I’ve had hives for an unknown reason and it’s miserable and scary. And my medical anxiety not what it is now when I had them so I can’t even imagine. Mine did affect my breathing so I carried around liquid Benadryl to chug until we could get somewhere for a shot. They eventually went away on their own, and I have a lot of auto immune issues. DH has them as well and he has to take daily famotidine and xyzal ( Merge’s recommendation, thanks!). His doctor started just the famotidine on its own but eventually he had to add the xyzal. They’ve done a really good job of keeping the hives under control until the last 2 weeks so I’ll be watching this thread. |
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Post by kachilyn on Apr 10, 2025 22:33:09 GMT
Not hives - but chronic inflammation and swelling and any bug bites look like baseballs sticking out of my leg. Mostly undercontrol at the this point with 2x day claritin 10mg/pepcid 20mg. Allergist had me doing this 4x a day during the first flares, now I am good with 2x. The lip swelling was the scariest for me and at some points required steroids to bring it down. I started allergy shots 3.5 years ago and it's made a big difference. I'm allergic to everything with pollen. Foods high in histimine trigger it for me as well, especially if I am stressed, tired or on the edge of getting sick. I can handle it in the morning but not by end of day. I'll get facial blushing and heat as well. It's auto immune for me. Likely MCAS but the first treatment for that is the claritin/pepcid combo I already take. Lots of empathy for her - but it will get better! A good allergist will help a lot. Have you ever used Zyrtec? Maybe I should try Claritin because i get the lip swelling and nothing can get it down. How often do you get allergy shots? Zyrtec made me hyper years ago. At this point my shots are monthly. When I started it was 2x week, weekly, 3 weeks, till I got to monthly. Once a year I have to do three weeks in a row for the new serum. I've probably got another 1-2 years to go on them. |
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Post by pantsonfire on Apr 11, 2025 0:58:39 GMT
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Post by iamkristinl16 on Apr 11, 2025 1:48:36 GMT
My dad died of leukemia two weeks after I had my second DS. There was also some conflict going on with DH for a few months. When I was set to go back to work when DS was about 10 weeks old I got REALLY bad hives. I remember that I took several medications and couldn't go back to work for at least a few more weeks because of the hives, but it did eventually go away. They said it was likely stress related because there was no other cause that was found.
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Post by heckofagal on Apr 11, 2025 14:18:58 GMT
DD got her first Xolair injection last Wednesday. She cried in the office because the nurse said she had never seen such a serious case of hives. And she woke up the next day...AND HER HIVES WERE PRETTY MUCH GONE! She had been told it could take a month or 2 to take effect and for her it took about 12 hours. She still has a couple breakthrough spots pop up, but they are smaller and not as itchy and seem to disappear pretty quick. She is still taking 4 antihistamines daily and the famotidine but she weaned off the steroid, as it was wreaking havoc. She goes back to get injections once a month. I'm not sure how long they will keep this up to or stop to try to see if they are gone. Some meds are LIFE CHANGING! |
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maryannscraps
Pearl Clutcher
Posts: 4,948
Aug 28, 2017 12:51:28 GMT
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Post by maryannscraps on Apr 11, 2025 14:58:28 GMT
Oh wow, I’m so happy for her!
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Post by pantsonfire on Apr 11, 2025 16:41:51 GMT
DD got her first Xolair injection last Wednesday. She cried in the office because the nurse said she had never seen such a serious case of hives. And she woke up the next day...AND HER HIVES WERE PRETTY MUCH GONE! She had been told it could take a month or 2 to take effect and for her it took about 12 hours. She still has a couple breakthrough spots pop up, but they are smaller and not as itchy and seem to disappear pretty quick. She is still taking 4 antihistamines daily and the famotidine but she weaned off the steroid, as it was wreaking havoc. She goes back to get injections once a month. I'm not sure how long they will keep this up to or stop to try to see if they are gone. Some meds are LIFE CHANGING! I am so happy the injections worked quickly for her!! |
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