Anyone has had a similar story to mine, of hives just disappearing for years?

I’m wondering if anyone has had a similar story to mine, of hives just disappearing for years?
In three years ago, my eyelid randomly swelled up. That led to constant hives, and angioedema every other day (mainly in my eyelids and lips). Nothing really helped except prednisone but two days after being on it I’d always go right back to itching. Friction seemed to make it worse (walking, carrying something like a heavy bag, etc). Sometimes it felt like it was “inside” like in my muscle tissue. I don’t have insurance so we are minimal in our tests (full CBC, sed rate, maybe a few other basics..all normal btw), but I was convinced it’s autoimmune related somehow.
Then in June, after I’d resigned to this being my new life…it just completely stopped after 6 months of misery. For the last 2.5 years I’ve had zero hives, zero swelling, nada. I forgot all about it. Fast forward to January of this year.. I was coming into the house and started itching out of nowhere. Got my clothes off and I see hives. The past month has been like they never left. Back is the itching, the swelling, the awful..full force.
I’m on prednisone right now, but before I can make it to the next morning I hive/swell overnight. Then my next dose clears me up again. It was only a 12 day dose and I’m worried about weight gain but I want to ask my dr to let me stay on some sort of steroid regimen because I’m miserable. I know he hates prednisone so I’m probably going to switch to a different Dr in the practice who will give me what I want.


Discussion


Kailey Castro Yes this can be normal. Symptoms can wax and wane for many weeks/months and you may experience times of remission as well. I was in remission for 7 years and then all the sudden, the hives and Angioedema came back full force..
Prednisone is the only thing that helps me as well, but I refuse to take it unless my Angioedema is really bad. I was on prednisone most of 2016 and it was so hard to get off of it.
I found it was actually just making my hives/angioedema worse every time I tried to taper off prednisone. Took me a good 5 months for my body to adjust back to somewhat “normal” again.
If you do have to stay on a steroid regimen, please research the side effects. It can be so damaging staying on them long term. It’s an amazing drug and I wish the side effects weren’t so horrid.
I’m sorry you are going through this 😢 I know it’s tough to handle..
Good luck, and hang in there

Kristen Jarrett Thank you. I have a friend who was on prednisone for several years. It was either that or not live a normal life. I’m grateful I could probably function without it because I know the horrible things it can do to your body.
I agree though that first dose is heaven but I think it does make it worse. I go back and forth on my opinion depending on how bad I’m feeling

Sue Elshire Hargrave People do go into remission, and then come back out of remission, unfortunately. I am so very sorry- I hope you hear from the many others this has happened to. They will totally understand!

Shannon Pepin I have been in remission for well over 2 years. Statistically they will be back in 7. I can sometimes just feel them under the skin waiting.

Raven Morgan I had hives for three years and than remission for five years and than they returned.

Kristen Jarrett That’s so crazy! I’m actually surprised I’m not alone. It’s just always been “that random time a few years ago when I had daily hives for 6 months”. I was 30 and it came from nowhere and left just as creepily. I thought I’d never see it again.

Pamela Vance Wollam I went 7 years between flare ups. Waiting and hoping for another remission that lasts that long! My only relief (besides prednisone, and I’m not sure I’d call that relief) is from immunosuppressants.

Kristen Jarrett What do you take? That’s an avenue I haven’t researched but need to.

Carla Baer Yes, I also had a period of time of about six years clear. I remembered to be thankful every day. Then they came back again. One thing that I appreciate now is that (unlike before) now I can have contact with people who share the same kind of days that I do. Thank you all.

Debora Crescenzo Ackner You’ve explained my symptoms and outbreaks exactly. However, no remission for me. It’s been a straight 19 years of this hell. I’m so sorry you are suffering again:(

Yvonne Visée Clohessy I was in remission for 20 years, then 8 years. Remission for me meant not hives, no drugs. Dr told me I would have it lifelong and would get periods of remissions.

Kristen Jarrett Off topic but I love your profile photo, I have a blue Merle- a border collie named Mattie.

Yvonne Visée Clohessy Mines a bi black sheltie, lose enough huh? Thank you.

Nancy Zimmerman Perry Hives for a year back on 1999. Finally Zantac and Zyrtec did the trick. I spent 16+ years on daily Zantac/Zyrtec. If I missed a dose they’d be back. Then in 2015, they came back, through the Zantac/Zyrtec. What finally did it this time is diet. I was put on AIP. I’m off all medication and I’m hive free as long as I’m true to the diet!

Robyn Starks This is my daily life

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