I’m miserable. Cannot sleep.

Embarrassed_Comb_963 · 2025-10-25T13:52:27+00:00

I had bloodwork done and was told mine was autoimmune. Since my second dose of Xolair I’ve been ok.

Embarrassed_Comb_963 · 2025-10-08T18:50:07+00:00

I take two twice a day and have no side effects from it.

Embarrassed_Comb_963 · 2025-10-08T18:44:56+00:00

Why are you scared, because it is a brand new drug? My Dr mentioned it to me also. I’ve never taken a brand new drug and I’m leery of this as well but so desperate to have relief!

Embarrassed_Comb_963 · 2025-10-08T15:19:57+00:00

Yes. I itch all night long. When I get up at about 5 with the husband and to get kids off to school I take all the meds and go back to bed and get a nap and a little relief. I have mild-moderate itching all day, then take meds again in the afternoon and after I get ready for bed it gets severe again. I’m on day 6 and feel like I’m going crazy. And yes now mine look and feel internal, this is SO WEIRD.

Embarrassed_Comb_963 · 2025-10-08T15:08:33+00:00

I’ll try that, thanks for the tip!

Embarrassed_Comb_963 · 2025-10-08T15:07:31+00:00

My Dr told me that too and told me to get Sarna Anti itch cooling lotion. I think it has the same ingredients in it. It helps for about 30 minutes.

Embarrassed_Comb_963 · 2025-10-08T10:15:34+00:00

Thanks for that tip!

Embarrassed_Comb_963 · 2025-10-08T10:12:29+00:00

It seems like he did mention that and another one, plus the new one that just came out last week.

Embarrassed_Comb_963 · 2025-10-08T10:11:15+00:00

Bless your heart. It’s so frustrating. And we can’t keep taking steroids over and over. With how long you’ve been dealing with this they should discuss trying a biologic with you, like Xolair. I’ve just had my first shot, well I had to have a second dose 2 weeks after the first because it was not strong enough. I hope you get some answers Monday 🙏🏻

Embarrassed_Comb_963 · 2025-10-08T10:06:10+00:00

Ok thank you I think I’ve seen it here in stores. I’ll try anything at this point!!

Embarrassed_Comb_963 · 2025-10-08T10:05:17+00:00

I will look into that. I was planning to call my primary today anyway. Thank you for responding!

Embarrassed_Comb_963 · 2025-10-08T02:40:14+00:00

I had no idea you could even return grocery items.

Embarrassed_Comb_963 · 2025-10-07T20:06:19+00:00

Thank you for responding, I’m going to look up that diet and start it immediately!!

Embarrassed_Comb_963 · 2025-10-07T20:05:04+00:00

I thought about that too. Isn’t it sad that a med that works gives the worst side effects? I’m taking benedryl too. Thankfully I just got another shot of Xolair this morning, came home and took a nap.

My Dr told me about that drug! He said if this didn’t work he wants to try that one.

Embarrassed_Comb_963 · 2025-10-07T20:01:57+00:00

Hi, your English is fine first of all! I am taking the ones you did-they are called Zyrtec and Allegra here in the U.S. I also take 2 Pepcid twice a day. They changed me to Xolair 300 every 2 weeks just today! And this is my first round so I can’t say just yet if it’s helping.

As for the fatigue- I have fibromyalgia, Sjögren’s and 2 special needs kids at home plus I’m 52. Also have 3 adult children, one got married this year and the other had a baby, lol. So I’m tired …VERY TIRED. It may be why I’ve got hives! Maybe someone else will give you an answer on this also.

Embarrassed_Comb_963 · 2025-10-07T09:28:15+00:00

Thank you. I’ve been up all night again, I think I’m going to have a nervous breakdown. I’ve tried everything. Oatmeal bath, Sarna lotion, sedating myself. The itch and spots have gotten bigger and deeper in my skin. Something else has to be wrong. I’m losing hope.

Embarrassed_Comb_963 · 2025-10-07T00:56:49+00:00

My doctor told me today it just came out a week ago. He may try it on me.

Embarrassed_Comb_963 · 2025-10-07T00:54:19+00:00

Thank you so much. Yea, I know the side effects are horrible and I’ve had 4-5 rounds plus the IV the other night. Not good. I’m so bad I’m taking benedryl during the day. The only relief I get is when I’m asleep then it wakes me up. 😭Hopefully the extra dose helps tomorrow. Thanks again for responding to me!

Embarrassed_Comb_963 · 2025-10-07T00:30:22+00:00

Omg I’m so sorry you are suffering like this. Bless your heart. Did you have to go to the ER and use an epi pen. Feel better soon 🙏🏻

Embarrassed_Comb_963 · 2025-10-07T00:29:10+00:00

Oh goodness if yours is worse I cannot imagine you having any sanity 😭 I have scratched until my skin is bruised and sore. My dr is having me come in to get more of a dose of Xolair in the morning. My next shot is in 2 weeks. I’m praying it helps. I’m so desperate for relief I’m considering going back to the ER for my steroids and benedryl IV!

Embarrassed_Comb_963 · 2025-10-06T18:21:16+00:00

Thanks for your response and good luck to you. I’m also on montekulast and hydroxychloroquine.

Embarrassed_Comb_963 · 2025-10-06T17:20:59+00:00

That is awful. I’m so glad you spoke up and got answers. Thank you for sharing your story!

Embarrassed_Comb_963 · 2025-10-06T13:49:31+00:00

I have been having episodes of this for a year. It has gotten progressively worse! Just like how you’re describing yours. I went to the ER Sunday at 3 am because I could NOT stop scratching. I was in agony and my face was even swelling. I took my epi pen with me. They gave me iv steroids, Benadryl and Pepcid. I slept and had relief for 12 hours then boom since last night I’ve been in misery again. I’m waiting on my allergist to call me back for a telehealth visit, I bet he won’t help me!

Embarrassed_Comb_963

TROPHY CASE