I was recently diagnosed with chronic hives

I had a skin biopsy done

Hi everyone, I’m new to the group. I was recently diagnosed with chronic hives after dealing with them on my legs since May of this year. The current course of treatment by my dermatologist is two Zyrtec (10mg) in the morning and two hydroxyzine (10 mg) at night. If this course doesn’t work, he wants to do xolair (sp?) injections. I’m having a lot of frustration with my condition as I’m sure lots of you here do. I haven’t noticed any improvements with the high doses of antihistamines. I had a skin biopsy done and my dermatologist used this to determine the chronic hive diagnosis. His office just called me to follow up and said it was eczema? Does anyone have any advice on how to go forward with his office on the next visit? I’m very frustrated as it seems he has given one diagnosis and his office staff has a different one? Ive not been super impressed with the dermatologist, but where I live there aren’t many dermatologists. Thank you and any advice is greatly appreciated!


Discussion


Sharon Fraser
Taking Zyrtec is good but it needs Zantac or something similar to work together. It’s a good combo as one is a H1 blocker and the other is a H2. A 3rd antihistamine is usually added at night which has sedating effects. You can usually purchase Zantac or similar med from your chemist. The dosage is recommended to 1 dose daily but the usual CIU dose is twice daily. Maybe you could try this? Best wishes x

Dee Sapp Reiff
Have you had your thyroid levels checked? My hives are due to my thyroid being off. I’m doing Xolair shots to keep hives at bay but am also on thyroid meds. Worth a try?

Julie Lynne Burnette
Dee Sapp Reiff my doctor hasn’t ordered any tests but a biopsy and an allergy test that showed no allergies 😢

Dee Sapp Reiff
It might be worth a try to get bloodwork to see what your thyroid levels are. Testing thyroid antibodies, T3, T4 and TSH. There is some info out there indicating that high antibodies can cause hives. Just a thought.

Julie Lynne Burnette
Dee Sapp Reiff I don’t know much about thyroid problems, but I know my father’s brother has a thyroid condition.

Dee Sapp Reiff
Julie Lynne Burnette It might be worth a try to get bloodwork to see what your thyroid levels are. Testing thyroid antibodies, T3, T4 and TSH. There is some info out there indicating that high antibodies can cause hives. Just a thought.

Dee Sapp Reiff

Julie Lynne Burnette it can be hereditary. My 15 daughter was diagnosed within the year of my thyroid condition.

Julie Lynne Burnette

Dee Sapp Reiff I appreciate the advice very much. I’ve never dealt with anything like this in my life, and am up to try anything to get to the bottom of this.

Dee Sapp Reiff

Julie Lynne Burnette I feel your pain! I hadn’t dealt with anything like it till a year ago this summer. It ruined that summer and took forever to get to the bottom of it. Hang in there.

Julie Lynne Burnette

Dee Sapp Reiff Thank you! I’m just really thankful I found a group of others to discuss it with!

Kirsty Moore
10mg? I take 180mg 4 times a day!

Julie Lynne Burnette
Kirsty Moore yes. That’s what he wants to try until I’m out of my hydroxyzine script. My legs still itch like absolute craziness. Sometimes they burn too. This has been so exhausting to cope with.

Kirsty Moore
Julie Lynne Burnette but 10mg isn’t a high dose of antihistamine, I’m not surprised you’re having no luck on a few 10mg pills!

Anne Camille Jongleux
Kirsty Moore 180 of Allegra is equivalent to 10mg Zyrtec. Are you really taking 18 Zyrtec 4 times a day? I agree that most here take more than 1 Zyrtec, but not 72 a day. Just want to clarify so as not to inadvertently suggest that so many is acceptable level to take. 4x label dose is often prescribed for Zyrtec (40 mg total) our Allegra (720 total)

Kirsty Moore
Didn’t realise that! I’m definitely not taking 72 pills 😂. Take the xolair if they’re willing to give you it! I had to wait over 4 years, trying every concoction of drugs before they would even refer me for it. 4 years of absolute hell

Julie Lynne Burnette
I think he’s quick to offer xolair to me because I have no known allergies per the allergy test I paid for 😂

Kirsty Moore
Julie Lynne Burnette I paid for allergy tests too (got the nhs here but they refused to refer me so I went private). Even with the negative allergy results I literally had to sit at the doctors and refuse to move until they did something.This was me for about 4 years and trying every drug out there! Head to toe

Anne Camille Jongleux

Kirsty Moore I don’t take Xolair but I agree that one must be an advocate for yourself and keep pushing for a treatment that helps you. I think it’s important that we ask our medical providers why they want to go the route they prescribe and for how long before they decide it isn’t the right path. I think we have the right to know if we need to try something for 6 days, 6 weeks, or 6 months before we consider something else. 4 years of misery waiting for Xolair is too long. I’m sorry that you had to wait so long.

Anne Camille Jongleux
Kirsty Moore Since the poster was new to the group I wanted to be sure that was clear. 😊

Julie Lynne Burnette
Kirsty Moore bless your heart! Mine are mostly just my calves and occasionally a flare on my thighs. When it first started it was a little bit of everywhere. I think heat is a big trigger for me because our summer here was so so hot and it’s very humid here. My doc mentioned xolair if the antihistamine route doesn’t work. 🙄

Kirsty Moore
Xolair has changed my life, however we’re forced to have a break after 6 months to see if we’ve gone into remission and I’m always back to square 1! Mid way through my second course and not one single hive so I’m making the most of it!

Kirsty Moore
Anne Camille Jongleux I’ve been educated too 😂. The different names from USA etc to uk are all different so confuse me!

Anne Camille Jongleux
Kirsty Moore I’ve had this for awhile so I have done a lot of reading. I too get frustrated by how little is known, but when I step back & look at info available as recently as 5 years ago, I can’t help but be hopeful. Xolair is more commonly used now. There’s ongoing research and drug trials. There wasn’t a test for autoimmune urticaria until last few years, etc. The differences between countries can be confusing, too. For example: Bikes Allegra is called Telfast in UK & EU and is commonly sold in 120 mg rather than 180. It’s sold as 120s in Canada but is called Allegra. Bilaxen & Rupall are known to be useful in treating hives, but it’s not available in the US, etc.

Soren J Ateri
Leave the derm and see an allergist. My derm was terrible. Bs and didn’t dose me correctly on xolair. I see an allergist savvy with MCAS now. World of a difference

Julie Lynne Burnette
Soren J Ateri thanks for the advice, I think there is one allergist here

Soren J Ateri
Julie Lynne Burnette may be a better choice than the derm… In the US, many hit the wall with derms

Anne Camille Jongleux
Allergists are who usually treat this in the US.

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