Thought I would write this post to help others who find themselves with the dreaded diagnosis of Chronic Idiopathic Urticaria (chronic hives with an unknown cause).
It all started last fall with what I assumed was a skin rash mainly on my neck, shoulders, upper arms and chest. I didn’t think too much of it at the time because I have always had sensitive skin and can develop rashes from certain fabrics and products. I thought that trying new skincare products was the cause of the rash. Later, when this rash appeared on my neck the same day as of one of my allergist appointments I asked about it and the nurse told me it was actually hives. I should have paid more attention to these rashes at the time.
In Sept I was eating a new brand of granola and halfway thru eating I started feeling a hot, tingling sensation in my face that turned into full blown hives all over my body. They made my skin feel like it was on fire, itchy and covered in raised red bumps. I started to panic and my husband suggested I take benadryl to see if it would help. After 20 min the itchiness lessened but the raised red rash lingered for hours. I thought it was a food allergy from the new granola (it contained cashew butter and tree nut allergies are common) so I tossed the granola and moved on.
The next month, almost to the day, the same thing happened—full blown raised hives all over my body. This time while I was drinking my morning cup of Early Grey tea with milk and honey (I have been drinking this daily for the past 3 years—same brand of tea, same brand of milk, same brand of honey). Once the same hot, tingling sensation in my face/ears started I looked in the mirror my face neck and upper chest were covered in hives. I took some benadryl and immediately made an appointment with an allergist.
These full body hives attacks have continued to happen 1-2 times/month at random times ever since. Sometimes in the morning, sometimes afternoon. I have no idea what triggers the hives which is frustrating as I want to prevent them. Once I was vacuuming when I broke out in hives.
Symptoms
For me, they usually start with the sensation of a burning and tingling sensation in my face/ears. Then it moves to my joints—shoulders, elbows, knees, and spreads to the rest of my body from these points.
My lips also tingle and swell, some times my lips are so swollen it looks like I had lip injections. I have had my tongue tingle along with feeling itching all down my esophagus, similar to the feeling of chicken pox down your esophagus. My ears itch and pop as if there is an altitude change.
Also I will get a rash--small red bumps usually in clusters. Mostly on my forehead, neck, chest, shoulders, abdomen. It is random and can appear on one or multiple areas and it usually itches. I’ll talk later about what helps ease my hives.
Sometimes if I take a shower that is too hot I break out in hives in my joints and along my upper chest and shoulders.
At the Allergist
At my first allergist appointment, after explaining my symptoms, the doctor performed a simple skin histamine test. He took a wooden stick (one of those long cotton swab sticks) and made three lines on the underside of my forearm, from light to moderate pressure. All three lines immediately became inflamed, raised and red, which is positive result for urticaria. He ordered bloodwork to test for any possible underlying conditions that could be causing the hives. Gut issues can also lead to hives and I asked if my eosinophilic gastritis was related to the hive attacks. He said it was most likely related but not sure how (were the hives causing the gastrsis or the gastritis the hives? Answer was anyone’s guess).
I noted how the attacks came around the same cycle day of my menstrual cycle, CD 23, and I asked if the hives could be hormone related. The doctor said hormones can act as carriers for the histamine so he wasn’t sure if the progesterone was causing my hives or just acting as a facilitator for the histamine to move through my body. He ordered a progesterone allergy test to show whether or not I had progesterone sensitivity allergy.
The progesterone allergy test wasn’t too bad. It was supposed to take about 30 min but I ended up being there for 3 hours. It took so long because I did react to the progesterone shots but the wheals weren’t the minimum size (they needed to be 7mm for a positive result) so the nurse had to consult with the doctor and they decided to do an additional dilution. The progesterone test turned out negative for me.
In the end they determined that there was no way to know what was causing my hives. It could be anything and I likely would never find the cause. My case is not uncommon, with chronic urticaria the root cause is often never discovered. Most likely it is related to an autoimmune issue rather than an allergy but the doctor said it's hard to know for sure.
Treatment
The allergist immediately prescribed zyrtec. Zyrtec is a H1 blocker (histamine blocker) and is supposed to be the best for hive skin issues. For me it didn’t help so they bumped me up to 2 a day. That made me more tired but I still got hives. I was told to add pepcid everyday which is a H2 blocker (in addition to being a stomach acid drug). That didn’t help so they doubled that dose (the doctor actually wrote me out a prescription so I didn’t have to keep buying a bunch of OTC meds). I’m still getting clusters of hives on my face, neck, shoulders, chest, and/or abdomen. I also experience the mouth/lip/tongue tingling sensation as well as itchy hives in my mouth and esophagus. Also, my lips still swell and lasts a day or two.
Since the H1 and H2 blockers aren't effective, the next step for me is xolair. It's a drug which binds to IgE in the blood it can’t bind to the histamine receptors which causes the hives response. In my case, the doctor ordered a round of 6 shots total, one shot every 4 weeks. The doctor told me xolair could help my autoimmune GI issues as well as my hives.
For the first 3 appointments I have to stay in the doctor’s office for 1-2 hours after the shot to make sure I tolerate it well and don’t go into anaphylaxsis shock (you are also prescribed an EpiPen). The approval process is pretty involved since it’s a specialty drug and it takes anywhere from 2 weeks to 30 days.
What Helps?
Since I have been dealing with hives the past eight months I have had plenty of time to experiment and try different things to find relief. Here is what works for me.
Ice
When my face starts to feel hot and itchy I grab ice, wrap it in a muslin facial cloth and start rubbing it all over my face and neck. This works fast and usually within 10 min or so the itchiness has stopped and it stops the hives from spreading past my face/neck.
Oatmeal Baths
When the hives are all over my body I like to take an oatmeal bath. I take quick oats and blend them into powder and add it to my bath water. This helps with the itching but doesn’t remove all the redness.
Topical Treatments
I have been trying to find a moisturizer that helps when I have active hives on my face, neck and chest. I always have Cerave moisturizer on hand and while it doesn’t aggravate my hives it doesn’t really calm them. I have tried so many moisturizers and, so far, the best for me is Kate Somerville’s Goat Milk moisturizer. It helps remove the redness and makes my hives noticeably smaller. Cerave also has this anti-itch lotion that I use when I have a flare up on my neck. It helps with the itching but again, does not clear my hives.
Also, this Kate Somerville exfoliator is amazing. It’s not too harsh to cause a hives flare up and it makes my hives less noticeable. I use it a few times per week and every time I use it my husband comments the next day how good my skin looks.
I also have some clear calamine lotion that helps with the itchy patches that crop up. I don’t notice that it clears the hives just helps with itching. I usually apply this to my neck and upper chest/shouder hive patches not my face.
I also have a prescription steroid cream (topicort) which I use on my facial hives (mostly on my forehead).
0 comments:
Post a Comment
your comments make my day :)