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.

Join the conversation

Please read our rules before commenting.

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)
bergmanj Member
 Alisha221172
bergmanj Member
<inline-mention username="Alisha221172" user-id="9784082"/> Comment subsequently proofread and corrected Sorry for the repetition, I share Alisha221172's frustration. I've suffered from hives from two years. They began in the summer 2023, just as I was recovering from COVID. My internist prescribed presdinose and hydroquinine (I think that's the name of the drugs I took.) Neither worked. A dermatologist misdiagnosed the condition as eczema and prescribed prescription medications. None worked (i.e. relieved the itching). Finally, two weeks ago an allergist correctly diagnosed my condition as hives, and descriptions I read online confirmed it -- for example, pressing the inflamed, itchy red areas and thereby making the skin turn white/normal. Also the association of itching with exercise. But the antihistamines, over-the-counter and prescription, have been useless. I do lead a stressful life, which the allergist said can aggravate hives; she also, I think correctly, told me to avoid red wine, the sulphates in which she said can aggravate hives. Daytime is manageable. But nights are unendurable, because my body, even without pajamas, is constantly pressing against a mattress. Is there anyone out there in cyberspace who can answer the following questions: 1. Can COVID cause hives? 2. Is alcohol consumption, which for me at night does help me go to sleep despite unendurable itching, harmful? I do find that the night-time itching starts BEFORE I take a drink, which I confess is scotch. Would white wine or some other hard liquor, like vodka, be better? 3. Are your hives much worse at night? Are there things you can do to make them less bothersome? For me only rubbing with ice cube reduces the itching. But it does not eliminate it! 4. Is showering before bedtime a good idea? It feels goodafterwards, but the shower causes the water to hit my body in a way that resembles my scratching it, thereby making the itching worse. 5. I find it VERY difficult, if not impossible at night, when the itching is worsek not to scratch. Any suggestions for how I might somehow refrain from this? 6. are there any creams or sprays that anesthetize the skin? This is my most critical question. I've used corticosteroid creams, but they I gather are not intended to do this, and in fact they have been ineffective at what they are supposed to do namely eliminating or even just reducing the hives. 7. My scalp has been affected by hives. It itches. Are there any shampoos anyone can recommend? I tried a mild baby shampoo, which was useless. I' now using an anti-dandruff shampoo-- Head &Shoulders. Has that been effective for anyone? 8. Last question -- really an observation: I know that hives are not life-threatening, and excepting them I feel fine. Appetite, energy both fine. All other medical issues minimal or manageable. (I am 76 but in excellent health. I go to the gym every day to life weights or to run. Exercise is an beneficial psychologically as it is physically I feel great when I leave. But my hives are driving me crazy!! I would be eternally grateful for any suggestions anyone could pass on to me!
1. Doreen H Community Admin
 <inline-mention username="bergmanj" user-id="9889901"/>, Thanks so much for reaching out. First, let me commend you on being an active and physically fit 76 year old! That's awesome. It sounds like you are at wits end with chronic hives right now. I certainly hope others will chime in here with their experiences. In the meantime, I thought I'd share a few articles that may provide some helpful information: <a href='https://chronic-hives.com/treatment' target='_blank'>https://chronic-hives.com/treatment</a> and <a href='https://chronic-hives.com/living-with' target='_blank'>https://chronic-hives.com/living-with</a> and <a rel="noopener noreferrer nofollow" href="https://chronic-hives.com/living/lifestyle-changes">https://chronic-hives.com/living/lifestyle-changes</a> Many in this community have kept "diaries" to search for answers on food, medication or environmental factors that may "be "triggers". If you are having the most difficultly at night, you may want to reevaluate your detergents, linens or mattress that may be adding to this challenging predicament. Additionally, there are still many "unknowns" when it comes to COVID and long lasting effects. However, currently hives are not typically associated with COVID. I wish you all the best as you search for answers and relief, Doreen (Team Member)
bergmanj Member
Thank you, Doreen, for taking the trouble to respond, and in particular for the articles you mention.! Jay
1. Doreen H Community Admin
 <inline-mention username="bergmanj" user-id="9889901"/>, Always know we're here for you. Reach out anytime! ~Doreen (Team Member)
Alisha221172 Member
Good afternoon team members. This is Nicole. Just a update in my chronic hives life. I am happy to say I am pretty much controlled. I call that a miracle, considering what I have been through. I didn't change any medication times for blexton. I just started cutting back or taking certain foods and such with higher hystemins, including collagen and citrus flavour vitiman C. I found out that one of my triggers is to much sugar. Even 2 cups of ice tea will bring out a few. I find they keep me in check and help me to control any stress or the out come will be hives. I am more positive now. I hope any of this will help you in your journey. Give it a try. You don't know till you try. Do research on other hystemin info. Bye for now. Nicole. 
1. Doreen H Community Admin
 <inline-mention username="Alisha221172" user-id="9784082"/>, Hey Nicole, That is fantastic news! I'm glad to hear these dietary adjustments have made a difference for you! Glad to hear you are doing well and your research and efforts have paid off. Thanks so much for the update. Stay well, Doreen (Team Member)
2. Emerald Member
 <inline-mention username="Alisha221172" user-id="9784082"/> Hi Nicole, thank you for sharing I’m too new to chronic hives since May 2024 I was start seeing symptoms but since August my symptoms got worse. I do use collagen on my coffee every day, did you say you cut out college or you add collagen to your diet and it helped you? Thank you.
Alisha221172 Member
I will. Have a good day.
Alisha221172 Member
I cut it out. I don't have collagen anymore, which does suck. Bad knees and more. Search "Collagen and Histamine Sensitivity." You will get more info there. Oh, evening showers or baths will bring on more histamines. They are more active in the evening/ night. The later the more higher the possible hystemin reaction. Amongst many other things I learned, sleep in a soft blanket folded in half like a sleeping bag. It helps ALOT. Anything soft. If you have any other questions ask and I will do my best to answer them. Try to have a good day. Oh, no fragrance cream.