Managing My Hives

How do I manage my hives?? Well, not very well lately! It’s been a very frustrating situation for me to find what works for me and what doesn’t. I manage a lot with knowing my triggers and trying to avoid them. Which isn’t always easy.

When I had my first break out of hives, I was miserable for 8 weeks. So much medication to get it to calm down. I was just over it. Over the years we tried different medications. Different things. It’s a game of trial and error to find what works. The right combo of meds, supplements, lotions.

So, what have I tried? Let’s go over it.

Trial and error

Antihistamines

• Claritin
• Zyrtec
• Xyzal
• Allegra
• Hydroxyzine
• IV Benadryl

Creams

• Clobetasol foam
• Clobetasol ointment
• Hydrocortisone
• Calamine lotion
• Aloe Vera gel
• Aveeno eczema lotion

A lot of weird ones, right? At one point I was taking 50mg of Claritin AND 50 mg of Zyrtec. It was a lot. It worked a little bit though. I’m currently taking Allegra daily and Benadryl as needed. It’s barely working. I think the worst for me is the itching. It’s constant, but worse when my port is accessed. I also do clobetasol foam when not accessed. It helps a lot, but I can't use it daily because it causes skin breakdown.  We’ve discussed Xolair, but haven’t decided to try it. I’m currently waiting on a consult with Allergy and Immunology. Which has a horrible wait right now.

Frustrated and angry

Did you know long term antihistamines use can impact renal function? I didn't, and as a CKD patient, that's left me frustrated and angry. So I'm damaging my kidneys faster, in order to manage my hives. That's such an awful feeling, having to choose between my kidneys and my hives. Like which is more important to handle? How do you even make such a decision?

It’s so hard trying different meds, hoping it works. When it doesn’t you feel defeated, and frustrated. I know I’ve felt that way on many occasions. I get so frustrated when I’m itchy, or why the med isn’t working. I think “great, let's try another one for it to not work.” We all get caught up in that thinking, it’s natural given the nature of chronic hives.

Treatment rollercoaster

Managing our symptoms is easier said than done. We have to try so many different things, and hope it works. It’s frustrating. I was told we may have to do new testing in October. I’d have to be without my meds for 2 weeks. I’m not sure how. That would take MONTHS to recover from. To get the meds back into my system enough to calm down the absolutely horrendous flare that would result from no antihistamines for 2 weeks. There has to be a better option than that, is there? I don’t know, but there should be!

There’s so many different options in managing our symptoms. These are just a few of what I’ve tried. It’s definitely not been an easy journey trying to find what works. It’s been a lot of tears, frustration and anger even. I know I can’t be the only one that’s experienced that rollercoaster of emotions with finding treatment options that work.

What have you all tried, that's worked? Or what hasn’t worked? Share how you manage your symptoms!