Finding the Right Treatments

By Alisha221172

2 min read

Hello. My name is Nicole, and I am a 51-year-old woman who has had Dermatopagraphia Idiopathic Chronic Urticaria for the last nine years (2015 to present) of my life. This health situation appeared out of nowhere and took over my health severely. I also have Austipenia and Epilepsy. What a combination!

Process of Elimination

For me, it was trying to figure out what on earth was happening to my body. Through seeing my family doctor, allergist, dermatologist, and rheumatologist t, I have been all over the place with treatments and medications. I have had Benedryl, reactine, and a combo of H1 and H2 antihistamines. Nothing worked. From my multiple ER trips, I thought someone might be able to help me with my situation. Nope. In my words, " Go home. We can't help you." Sometimes, that brought me to tears. I also have had several tests done. My IgE is 2. (normal is 120 ish) as of April 2024. Nothing came out of that, and neither did my platelets, which were 470 (average 140 to 400). What's new?

My medications journey

All the medications I mentioned didn't work. Currently, I am on Blexton (4 pills max dose) since May 2019. At first, it was manageable for a short time, but then it got worse on and off to the present day. As of July 30,2024, I changed the schedule a bit. I used to take 2 pills at 3:30 am, 1 pill at 1 pm, and 1 at 8:15 pm. Now it is 2 pills at 4:15 am and 2 at 4 pm. It seems to help a bit more. I have had so many prescriptions for prednisone. It helps a lot, but I still can get quite a bunch—one; my body has started the day over 100. In my opinion I think my body starts to get used to it. The doctors and allergists suggest Xolair, but I have an appointment at The Allergy Clinic on September 25/2024. They do natural stuff. I may have mentioned this. Being off my meds for 3 days (they want that) is going to be a disaster. We will see what happens.

The physical effects of my chronic hives

My hives can be all different sizes. They can have white rings around them and turn my legs purple. They swell like crazy at first and flatten most of the time. My hives appear everywhere whenever they want. They like to favor my legs and ankles. For my face, there have been times when I don't recognize myself. The swollen eyes, lips, and hives on my face. It feels like needles are poking me, bugs biting and stinging me. Also, they can hurt like a deep bruise, which they do bruise. Most of all, they are itchy and irritating.

Personal therapy

Soft blankets, ice packs, damp cloths, and non-scented cream. I use Alveno. Also, bio freeze, lidocaine, and a spray bottle with cold water, but most of all, a cold shower. PS. It is not good to shower in the evening or later. The systems are more active then, and hives appear even more. Use other therapy at that time.

Finding connection

I am glad I ran across this site. The doctors don't seem to be much help at all. Maybe you guys will be able to help me. I read about Xolair, and the side effects are scary. If you take it, can you tell me your side effects and coverage information? Thank you for reading my story, everyone.

Treatment results and side effects can vary from person to person. This treatment information is not meant to replace professional medical advice. Talk to your doctor about what to expect before starting and while taking any treatment.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Chronic-Hives.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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CommunityMemberd0a96e Member
Hello Alisha, I have been on Xolair for 7 months. While it has helped with my swelling and severity of hives, they still remain ...daily. I personally have not noticed any side effects and I understand that some have had far better success with Xolair in just a few months. However, prior to moving forward with these injections, I would highly recommend checking your insurance coverage as Xolair is extremely expensive if you have no insurance coverage. That said, Xolair currently offers an annual copay allowance of $15k but that could change. In any event, for me, I stopped putting time, energy not to mention money into trying to find the root cause of my Chronic Hives. Unfortunately, Chronic Hives seems to be an affliction that affects few and consequently has few research dollars invested in its diagnosis and treatment. My focus now is on management through biologic drugs, if possible, and keeping an eye out for new clinical trials and drugs being developed. I may explore acupuncture even though I don't have much hope that it will work. That said, as the saying goes, desperate times call for desperate measures. I hope in some small way this helpful and wish you well towards remission or cure.
1. Doreen H Community Admin
 <inline-mention username="CommunityMemberd0a96e" user-id="8878190"/>, Thank you so much for sharing your experience and kind words of support. My best, Doreen (Team Member)
Alisha221172 Member
Hi Community Member Well I have some good news. For 9 days I have been improving alot. I can get as little as 5 and most at 10 with some small to medium wash like ones. Those dissappear in a couple of hours or less most of the time. I even wore pants and jeans! I canceled my Sept 25 appt because I don't want to ruin anything, and I deserve this. We all would. I believe in Jesus and I also thought this could be the start of my healing. It probably won't all disappear, but to me this feels beautiful. What I did to get to this point is cut out certain foods and drinks. No Ice drink ( fake sugar.) Fake sugar is bad for our situation. No lemon, little cheese . I rotate between apples and oranges for part of my breakfast. I also cut out on alot of sugary stuff ( I am not a sugar bug) like lemon candies (lemon is bad. All citrus fruit to.) Coke bottles chewy ones and more. I don't seem to react very good to pure sugar so I cut back from what little I have. It sucks to not have ice tea. Look up foods that have hystemins and stuff realed. You can be surprised what shows up. Oh make sure you have at least 8 cups of water a day and exercise as well. I hope I stay like this or get fully better by Gods healing hand. I pray lots. Thank you for the information you gave me. We are in this together. I will keep in touch. Alisha💖 
1. Doreen H Community Admin
 <inline-mention username="Alisha221172" user-id="9784082"/>, We're glad to hear you are finding some relief! It sounds like the dietary changes are making a difference for you. Thanks so much for the update, Doreen (Team Member)