The never ending itch
Posted , 3 users are following.
Hello,
Wondering if anyone has any suggestions/similar experiences? In summer 2017, I began to have discomfort around my rectum....severe itching, morning, noon and night. You name it and I was treated for it - pinworms, scabies, hemorrhoids - and the itching didn't go away. Nobody else in my home were having any issues.
I then started to break out in hives, all over my legs, arms, torso, back, feet - the only place it didn't hit was my face. I didn't change anything, no new soaps, detergents, no new foods. Nothing. Again, nobody else in my home had any issues/itching.
My GP referred me to a dermatologist, who at first said, it was scabies. He sent me for a round of blood work and gave me a lotion to use, as well as Atarex before bed and Benadryl as needed. It continued through the fall and on Dec 22, I called his office in tears.The itching was unbearable and I hadn't slept much for weeks. He started me on oral Prednisone for 8 weeks, and booked an appt for follow up after the holidays. After about 3 weeks, I called back, as I was no better. He booked me for an appt and then a follow up biopsy. That morning, I had a fresh batch of hives on my leg that he took the sample from. Results? Hives. No shirt Sherlock! I could have told you that.
By this time, I was on Kenalog injections and then one day in March, I realized I was not itchy. The body hives went away and the itchy around my bottom went away. I was cured!
But about 2 months ago, the itching started around my bottom again and 2 night ago, I started breaking out in hives. I still have 2 Kenalog injections to go and am ready to lose what is left of my mind. I really feel there is something more going on and I do not know where to turn. Plus, I've gained about 40 lbs from the steroids.
HELP!!! I'm at the end of my rope and getting ready to let go.
0 likes, 9 replies
angieB48 dic1973
Posted
Not sure if my situation is similar coz I have the itching on the places you don’t- face and scalp. But I’ve gone through months of testing and different meds and creams like you. I’m waiting on a skin biopsy and have been on a food elimination diet for 10 days. Two interesting routes for you to look at if you haven’t already. Do you have a high carb/sugar diet? Where you are itching is well known for that when in a Candida overgrowth. Secondly, are you allergic to any pollen? I haven’t been before this year but this weekend made the connection with intermittent watery eyes, runny nose etc and tree pollen allergy. When I read up on pollen you can get food allergies from plants and fruits from the same pollen strain and if you are eating a lot of these it can cause the food allergies to spread - itching is common. I’ve realised I’m eating food daily that I may be allergic to. I’ll be pushing for allergy testing when I see my derm next- if I hadn’t made a chance connection I wouldn’t know this. It may not be the right answer but I’m finding the medical profession just want to treat the symptoms and not find the cause. Both of these might not be helpful to you but having researched all of this for months I’ve tried lots of things!
dic1973 angieB48
Posted
angieB48 dic1973
Posted
dic1973 angieB48
Posted
According to the dr, biopsy ruled out anything serious, ie: skin lupus, cancer. Dr believes it may have been from ibuprofen and/or codeine (for migraines). It's all so confusing!
UC_Sufferer_UK dic1973
Posted
I have suffered with urticaria for almost 40 years, my current episode is 6 years and counting. Before that it had been dormant with no medication for 12 years. Mine is so bad I get it in my mouth, ears, nose and it makes my eyes itch. Like you, I have similar symptoms around the groin and genital area and have tried every medication offered. Right now the only ones working for me are fexofenidine and amitriptyline. The amitriptyline doesn't actually treat the urticaria, it actually treats neuropathic symptoms, I get a sensation of my skin crawling and it reduces that sensation.
Have you talked to a dermatologist about taking H1 and H2 Suppressors? Things like tranexemic acid, ranitidine. There are also leukocyte suppressor that could ease your symptoms like montelukast, these are all medication names for the uk, but I'm sure some research will help you find the US names. For extreme and long lasting cases doctors can also resort to hydroxychloroquine, azothioprine and cyclosprine. I have tried all of these and sadly the results were not successful, but that doesn't mean they won't be for you. I had a bad reaction to azothioprine and cyclosporine. I would say educate yourself as much as you can before you see the next dermatologist, steroids are not always the best or only treatment for urticaria. One thing I can advise is oatmeal baths, it sounds horrible, but it does work. Sometimes medication is not always the answer. Also, I have found I have a reduction in my symptoms after I started drinking aloe Vera water/ juice daily. I drink 500ml every day.
Also, have you considered changing your body soap to a PH balanced soap? I have so many problems with soap that it took me years to find one that didn't make things worse. In the uk we have glycerine soap called pears or simple that are great, also a brand called dove and E45. Search your stores and pharmacies for brands that are ph balanced. I also ensure my soap is perfume free as well. You might also want to consider that your laundry detergent and/or fabric softener could also be the catalyst. I know I break out if I use certain brands or accidentally use too much. Lastly and most significantly, urticaria can be exacerbated by stress, so I would advise, if you don't do this already, to set aside 1 hour a day where you do something that is relaxing for you, for me this is going in the bath to soak and read a book.
dic1973 UC_Sufferer_UK
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UC_Sufferer_UK dic1973
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Laughs.. who said I was still sane? Sadly, life isn't easy, I'm trapped in my home because of how urticaria affects me. I can't get hot, have to sit in an air controlled room, I take medication 4 times a day, I'm vitamin D deficient because I can't go out. Clothing, grass, animal hair, fur, feathers, grass and both types of latex are triggers for my urticaria. Allergies are a common factor in urticaria, so don't think that you can't have allergies. In the almost 40 years I have had this illness I have been allergic to crazy things and some of them lasted hours, others became permanent. For me it seems animals are a significant trigger. My urticaria began when I was a child after riding a horse. You should seriously consider being insistent with a doctor about allergy testing, it could uncover the source of your hive rash. And your comment about your biopsy showing hives.. of course it was going to, but the reason they do the biopsy is to rule out anything else. Ask your doctor next time your there for a blood work up that specifically measures the level of histamine in the blood. One last thing.. how much reading have you done about urticaria? Do you understand the mechanics of it, how it triggers, what it does to the body?
UC_Sufferer_UK dic1973
Posted
Oh, something else as well... You might consider seeking a referral to an immunologist. Urticaria is actually an immunological illness not a dermatological one. It manifests on the skin, but it actually is caused by the body overproducing histamine. This is caused by the body's H1 and H2 producing cells getting a false signal telling them you are having an allergic reaction, they go into overdrive and voila, you are covered in hives. Most dermatologists don't understand the mechanics of urticaria and they are not specialists in this illness, immunologists are. If you are lucky you will get a dermatologist and an immunologist who will work together to treat you, the dermatologist can treat the symptoms, but only after the immunologist has got you on a working drug combination to control the every day symptoms and issues that are caused by your immune system attacking your body. Ask your dermatologist about light therapy, it's where they stand you in a medical grade sun booth and give you controlled measures of uv light. It can help immensely, it has helped me a little.
dic1973 UC_Sufferer_UK
Posted
I am so sorry - I understand somewhat of what your life is like. I spent the holidays at home and my two young boys couldn't understand why mommy didn't want to play. I have read a little about it but not as well versed as you are. I am going to ask for a 2nd opinion. My current dermatologist just wants to give me steroids for now and won't even see me until the course is complete. And he said the hives were probably because of ibuprofen and/or codeine (for my migraines). Needles to say, it is very frustrating. The biopsy came back and confirmed no skin lupus or cancer, and dr confirmed nothing sinister. But I will definitely be inquiring re: immunologist, I will also speak to my GP about that. Thanks for the advice.
I hope you have better days soon.
Diana