Horrible Hives

Hi @shannalee3,

You may notice that I moved your discussion and combined it with this existing discussion on hives. as it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Thank you very much hope i can find somebody that can maybe give me some leads to go in a New Direction with this

I live in Missouri also and I agree nobody knows anything here, and unfortunately they’re not likely to anytime soon. ( my humble opinion and experience over the last 15 years) I go and visit a doctor in Oklahoma it’s 500 miles one way but I have family there and so I make it a time to visit and a time to get help. There is a functional doctor just south of Tulsa Oklahoma and I’m happy to share the information with you if you like. It looks like the Mayo Clinic has posted some good information for you as well - of course the mayo clinic is like the gold standard. I once knew a young man who was diagnosed with multiple sclerosis - he was young and he had basically begin to resign his life, had five small children . He decided to go to the Mayo Clinic where he found out he didn’t have multiple sclerosis at all and that he would live a normal life! I don’t know where you live in Missouri but another suggestion is Iowa city . Iowa city has some very good doctors, and perhaps use more of a functional medicine approach than many mainstream doctors.
But seriously one of the best things we can do for ourselves... is the 10 day jumpstart diet where we eat nothing but veggies raw or cooked or fermented. We have been exposed to so many genetically altered foods that were grown with pesticides that our bodies eventually say enough ! I Once ate a single soybean raw from my brother-in-law’s field here in Missouri and had hives for two days. Why? I just wanted to see what it tasted like. Did I know it was laced and genetically engineered to include the pesticide Round Up? No! Our bodies can get rid of an amazing amount of poison and toxicity but we have to give it a break and it starts with our digestive system and lots of good water . Eat organic for those 10 days if you can and add back foods one at a time, to perhaps find the allergen that’s causing the hives - most likely. Please share what works for you WHEN you find the solution - and you will. You may be very surprised at how simple the solution is and how sad that doctors won’t or can’t, tell you.

Hi all, I have a question about steroids. I have Clippers disease and have been on steroids for almost a year. I’m now don to 15mg per day and will taper down after my next MRI. For a few weeks I’ve noticed some pain in my jaw, but more an ache not like a toothache. Went to the dentist and he said my bite was off and this can happen with steroids. He smoothed out the lower tooth but said it may take a few days to get better. Luckily, X-rays showed that the bone was in good shape. Has anyone else experienced this with steroids?

Well I'm currently in st.joe but I've been to Columbia I've been to Kansas City I've been to Kirksville I've been all over the place as tarded honestly my finger my finger it's like something bit me I scratched it this was like 3 in the morning my whole finger swell up the next day I went to the hospital there I go here have some steroids and Benadryl you're having allergic reaction I was like no this is coming from the inside of my body I can feel it and it is kept pumping before steroids till eventually out ended up in ICU and the steroids just made it worse nothing seems to be making it better my doctor now at st.joe is talking about sending me to the Mayo Clinic I've been sick since I was 22 I'm now 36 and I just want to feel good and thank you for all the information

Hello, I’m here out of desperation for my husband, David.

Almost 8 months ago he started breaking out in horrible, full body hives for no apparent reason. Nothing new had been introduced to our life; he just woke up one day covered from head to toe. We started taking antihistamines, with no relief, and after a massive attack to the point that hives on his eyelids caused his eyelids to swell, we went to the ER. They then directed us to an allergist, who did a skin test and found nothing.

We were then referred to an endocrinologist, who did her own tests and discovered that his body was being flooded with a type of antibody that usually attacks the thyroid. She diagnosed him with the auto immune disease Hashimoto’s (which his mother does have), and put him on a low synthroid dose, although she said his thyroid was functioning fine. She also disagnosed him with prediabetes and put him on metformin. Neither of these helped the hives, which by this time had become a constant thing to his every moment.

After this we went to his GP, who put him on steroids. For about a week he cleared up, but then the hives came back, even with the steroids. His doctor didn’t want to give him more steroids, so she put him on a stronger dose of antihistamines that he had to take four times a day. These did nothing.

The hives got worse. One time he got so covered and his body swole so much that his lips split open and I rushed him to the ER in fear that he would die. The ER didn’t do anything but gave him more steroids.

We were then referred to a dermatologist who was willing to go the extra mile to help us. She did many bloods tests and skin tests, and found his body was being flooded with a type of antibody called neutrophils. She also mentioned that his hives were some of the worst she’s ever seen. She first tried a combo of steroids and antihistamines, but this didn’t help. She then put him on a type of medicine called methotrexate, which helped for a while, but ultimately began to not work just like the other methods of treatment. He was told by his dermatologist that methotrexate isn’t a solution and can be dangerous, so he can’t be on it longer than six months.

We were then referred to a rheumatologist due to a large C-reactive protein in his body. My husband tested negative for rheumatoid arthritis, so the rheumatologist is now testing him for the whole amount of auto immune diseases. We will get the results next week. But we are basically hitting a brick wall with this, and my husband and I are both disheartened to find that nothing seems to be working to help him.

At this point. we are desperate, looking for answers anywhere we can. This isn’t livable for my husband, not knowing whether or not he will be able to walk because hives have swollen his feet to the point that he can’t. We really need some guidance about where to look for answers from anyone who can provide them.

Hi @olivalot and welcome to Connect. You may have noticed I moved your post to this existing discussion on hives, so that you can connect with others who have experienced hives that won't go away. Click VIEW & REPLY in your email notification to get to your post.

It must be so demoralizing to not find any answers and have no treatments so far help your husband. I wanted to introduce you to @gardeningjunkie @shannalee3 @thoferer81017 and @amberpep as they have experience with hives or other undiagnosed skin conditions and may be able to offer you support as you help your husband.

Back to you @olivalot, how is your husband doing today? Is there anything he does that helps limit the itchiness of the hives?

Your husband has Hashimoto's skin disease which is a complicated auto-immune disease. I have a girlfriend who like your husband has H. and at times has had severe skin hives, so it does seem to be tied into this disease. My previous other experience with hives is based on my sister-in-law who after eating strawberries will break out in hives within a few hours, so in her case it is a food allergy.
You are searching for answers and often those of us with autoimmune diseases have multiple diseases and this could be happening to your husband.
I have no medical experience, but been forced to educate myself about skin disease because of my own issues and so I am offering a few ideas because I do understand the misery your husband is experiencing as I have had eczema inflammation which was driving me to the point of suicide because the pain and itching didn't allow me to sleep. I was loosing my mind. I spent hours a day searching for answers and because of my diligence giving my doctors ideas when stymied I am leading a controlled but happy and productive life again.
#1- Have you checked into the 5 Day Extended Patch Test? It is given by a specially licensed dermatologist or allergist and yes this test takes 5 full days. They may not be able to administer the test if his back is broken out, as he needs a clear area of skin to test and for most it is the entire upper back. I didn't become allergic to contacts until middle age, yes it can happen overnight because our body finally gets weary of trying to protect us from toxins and yes even natural ingredients we come in contact with every day. The answers I got from this test gave me my life back.
#2- Another option is a detox diet to get his inflammation down. True my contact allergies caused my Allergic Contact Dermatitis, ACD, which is chronic but under control because of my test results which allowed me to purge the allergens from my environment, but after that I developed 2 other forms of eczema. Auto immune diseases seem to pile on. Yes all doctors want to prescribe steroids, quick results for some, yet I am allergic to 3 of the 5 classes of steroids and for one of my new forms of eczema the steroids actually fed this eczema. Also my other form did not respond to even my non-allergic steroids at all. As a last result I began a detox to lower inflammation. Candida is often the cause even though I had no common symptoms like discharge from the vagina, that's because yeast can live inside our tissues raising our histamines in our bodies. 4 months later I am amazed at the results. Food allergies or foods that breed yeast raise our bodies inflammation caused by high histamines (your husband is taking strong antihistamines trying to lower his histamine levels). This diet is simple- it is a zero carb and zero sugar diet (yes even natural as in fruit) for 2 months. This starves out the residual yeast in the body killing it. Yeast requires carbs and sugars to live and yes when it is dying out you will go though withdrawal, as the starving yeast is sending messages to the brain to be fed sugar. After 2 months of this elimination dies, I am allowed a few minimal serving of fruit a week and a few servings of carbs, but no gluten. No processed sugar for life. Surprisingly after 6 weeks I noticed a difference at the same time my sugar craving lessons. My mouth no longer watered looking at a cookie or piece of candy which others in the household were eating. I read a book which got me motivated to try this detox, yet your husband is so severe he should consider seeing an MD who specializes in food allergies or food related health issues. This diet will not harm his body and as he is desperate this is a safe consideration and it may help him. Of course check with his specialist about Hashimoto's before he tries this diet as that disease has food restrictions I believe.
Hope is keeping him going right now and it seems you have good medical care and are learning what he has and what he doesn't have and let us know his progress. Also keep searching on blogs like this as I learned a tremendous amount for fellow sufferers.

Yes diet can be a simple solution. For me I tried the Dr. William Crook anti yeast candida diet I read about in his book The Yeast Connection which was reported to reduce the inflammation in our bodies which could cause skin issues. Now after using myself as a Guinea Pig I have come to the same conclusions you have about the food we eat today. As a senior my body finally couldn't handle the toxic foods included in what I believed was a healthy diet. Weight has never been an issue and I always ate foods I believed to be healthy and full of vitamins with only occasional desserts or processed sugar foods. Those of us that try a detox diet have to be forced to give up our favorite foods, even foods we always to believed to be healthy and full of vitamins and nutrition. Pain is a strong driving force which can give us will power. Also these diets take time to notice results, for me no positive change until 6 weeks. Plus we can't return to eating the same way we used to or we will have our symptoms return.

I checked with my female friend, age 65, who has had Hashimoto's since age 12. She has had hives just a few times in her life, yet 2 years ago, out of the blue, she had a radical hive attack unlike her other milder attacks. The spots looked liked targets and covered her entire body. Her doctor termed it "erythema multiforma". He prescribed anti viral meds and told her if the hives entered her eyes or privates to go immediately to the ER, which they did not do. Like you she has found no direct connection of H. to hives, but hives are an autoimmune disease and as mentioned those of us with autoimmune disease often have multiple types.