Claire, after receiving the Moderna COVID booster in late 2021, red lesions popped up on my torso. I was plagued with constant itching. My primary didn't know what it was, and since it was Christmas time, I couldn't get an appointment with a dermatologist until January. The dermatologist immediately recognized it but wanted a biopsy to confirm it: bullous pemphigus vulgaris, a rare and incurable (but treatable) autoimmune disease. The Rx? 100 mg of prednisone daily. I'm just recovering from the second bout that has kept me housebound since September. The prednisone blew up my body, rendering me immobile. It's been a wild ride. I found comfort in writing in response to art from the Musee d'Orsay and the Rijksmuseum, both of which I visited a year ago.
I’m sorry to hear about this struggle. Prednisone is a drug that does the job but its side effects are so hard. I hope you will continue to find a new balance. Writing inspired by art sounds like an excellent approach!
These irritations (however seriously they affect our lives) are often brushed off by doctors. I find myself trying things at home these days as I know what I’ll get if I go to the GP. They just don’t have enough training to know what to suggest - and the training is often outdated - and our system is led by big pharma more and more. I’m beginning to look at toxins and reducing them from my life. I have chronic nasal rhinitis and nothing showed up in allergy testing. I have developed food sensitivities as I’m approaching menopause. I think clean eating and living, cutting out processed foods and products with parabens etc. is key. Good luck with your journey 💚
The power of big pharma is a problem indeed. And sometimes it’s easier for a doctor to prescribe medication than it is to diagnose what’s really going on. Eating more cleanly is a good plan and can never harm. I hope you will find some relief this way.
I can identify with your situation. My left foot has been hurting for over a year and doctors don’t know why or what to do. I’ve had back surgery and vein procedures. Next stop would be a neurologist. But I know things could be much worse — worse things many people are dealing with.
Thanks for this post— I am struggling with something similar and saw my allergist yesterday. (I am grateful that he does take my situation seriously.) He gave me a stronger tacrolimus prescription since the weaker one is no longer working and a prescription for prednisone to have on hand if I get a flare-up before my kid’s upcoming wedding. We scheduled a patch test for the near future to figure out if this is contact dermatitis or just new, stronger immune response to my regular allergies (allergic dermatitis.) I didn’t realize there was a difference until now. An interesting thought about gluten. My sister was just diagnosed with celiac and I know from my now-deleted 23andMe testing that I have a high likelihood of of gluten insensitivity. I rarely eat gluten these days, but am not gluten-free, so I will look into it.
Thank you for sharing your story. I hope you'll try out a gluten-free diet. One of the reasons why it was so hard for me to figure out what the underlying problem was, was that so many things triggered my eczema: perfumes, shellfish, wine. After I stopped eating gluten, many sensitivities disappeared and my skin became "normal," tolerating all sorts of lotions and soaps. But it takes a while for the gut to heal and the skin to clear. I also respond to certain proteins that are like gluten, such as those in oats. I so hope you'll figure this out. (And feel free to send me private questions if you have any.)
Interesting – thanks! My sister has found she cannot tolerate any kind of grain or soy product. After I do my patch test, I’ll try an elimination diet.
Your story is so similar to mine with the gluten problem! Since it was never a huge problem, no one ever thought of it - including me, while I suffered from gluten sensitivity my whole life, and was diagnosed with everything but. The itching was probably worse during holidays when I was eating lots of pastries. I was in my forties when a new doctor I started seeing said, "You know what, let me check for allergies, especially gluten." Since then, I feel so much better! For the longest time, no one knew much about gluten allergies, and I think even now it's hard to tell when you don't have the "usual" symptoms. Glad you figured it out! I know how much better you must feel! Thanks for sharing your story.
I suspect I had this intolerance my whole life, since I had eczema my whole life until I stopped eating gluten. So glad your doctor made that suggestion. And yes, I feel so much better. No more brain fog either. Thanks for sharing your story.
a friend’s son was misdiagnosed with IBS and they didn’t diagnose celiac disease until they were removing several feet of damaged intestine. this is a wealthy family, with access to healthcare.
i suffer from the hereditary form of a condition called Diabetes Insipidus. awkwardly named, it means that my kidneys don’t recognize anti diuretic hormone, or my brain doesn’t produce it properly. so i’m always dehydrated, always have to pee and cannot tolerate heat.
not only can’t i afford the horrifying test they use to diagnose the condition, but the treatment isn’t much better than the disease.
i rely on gatorade and other electrolyte formulas to stay healthy and pain free. plain water doesn’t always cut it. yet i was denied gatorade in the hospital because the staff didn’t believe me about the DI.
Thank you for sharing your story. I’m sorry about your condition. Being ill is bad enough, not being believed by your doctors is worse. So sorry they didn’t listen to you in the hospital. I hope it will be different if there’s a next time you need help.
You are so not alone. I am so so sorry you went through that. The blood test is not known to be reliable, if they ever tried that. I had the celiac biopsy to verify. And I found oats, even certified GF, can actually cause the issues in my body, too. I am one of those celiacs who cannot eat c gf oats or I continue to “mysteriously” rash, swell, itch, and hive unpredictably. Not as bad as with gluten, but my body tells me no go there. Thank you so much for sharing your story.
Thank you, Kristen. I, too, stay away from oats. My body just cannot digest them properly and they give me trouble. I’m surprised how many people suffer from similar problems and how few doctors suggest the culprit might be gluten. I hope more people will figure out what the underlying issue is of so many health problems.
Enjoyed meeting you last evening. I’ve had fiction published in Gargoyle. And by the Fiction Collective 2, who published Lidia Yuknavitch a long time ago. Do you have a novel in English. I’d love to trade books.
Nice meeting you indeed. I only have one novel out now for younger readers: A Whale in Paris (Simon & Schuster). And I have short story collection in English coming out in July.
Really helpful and important, Claire.
Thank you, Beth.
Claire, after receiving the Moderna COVID booster in late 2021, red lesions popped up on my torso. I was plagued with constant itching. My primary didn't know what it was, and since it was Christmas time, I couldn't get an appointment with a dermatologist until January. The dermatologist immediately recognized it but wanted a biopsy to confirm it: bullous pemphigus vulgaris, a rare and incurable (but treatable) autoimmune disease. The Rx? 100 mg of prednisone daily. I'm just recovering from the second bout that has kept me housebound since September. The prednisone blew up my body, rendering me immobile. It's been a wild ride. I found comfort in writing in response to art from the Musee d'Orsay and the Rijksmuseum, both of which I visited a year ago.
I'm glad you found relief!
I’m sorry to hear about this struggle. Prednisone is a drug that does the job but its side effects are so hard. I hope you will continue to find a new balance. Writing inspired by art sounds like an excellent approach!
These irritations (however seriously they affect our lives) are often brushed off by doctors. I find myself trying things at home these days as I know what I’ll get if I go to the GP. They just don’t have enough training to know what to suggest - and the training is often outdated - and our system is led by big pharma more and more. I’m beginning to look at toxins and reducing them from my life. I have chronic nasal rhinitis and nothing showed up in allergy testing. I have developed food sensitivities as I’m approaching menopause. I think clean eating and living, cutting out processed foods and products with parabens etc. is key. Good luck with your journey 💚
The power of big pharma is a problem indeed. And sometimes it’s easier for a doctor to prescribe medication than it is to diagnose what’s really going on. Eating more cleanly is a good plan and can never harm. I hope you will find some relief this way.
Thank you - it’s an ongoing battle against the food industry and pharma and age! :)
Oh wow. I'm sorry you had to go through all that.
Thanks Michael, I’m glad it’s behind me!
I can identify with your situation. My left foot has been hurting for over a year and doctors don’t know why or what to do. I’ve had back surgery and vein procedures. Next stop would be a neurologist. But I know things could be much worse — worse things many people are dealing with.
I’m sorry to hear the doctors cannot find the cause of your pain. And I hope you will find a solution that works for you.
Thank you, Claire. Wishing you well and glad things are getting better.
Thanks for this post— I am struggling with something similar and saw my allergist yesterday. (I am grateful that he does take my situation seriously.) He gave me a stronger tacrolimus prescription since the weaker one is no longer working and a prescription for prednisone to have on hand if I get a flare-up before my kid’s upcoming wedding. We scheduled a patch test for the near future to figure out if this is contact dermatitis or just new, stronger immune response to my regular allergies (allergic dermatitis.) I didn’t realize there was a difference until now. An interesting thought about gluten. My sister was just diagnosed with celiac and I know from my now-deleted 23andMe testing that I have a high likelihood of of gluten insensitivity. I rarely eat gluten these days, but am not gluten-free, so I will look into it.
Thank you for sharing your story. I hope you'll try out a gluten-free diet. One of the reasons why it was so hard for me to figure out what the underlying problem was, was that so many things triggered my eczema: perfumes, shellfish, wine. After I stopped eating gluten, many sensitivities disappeared and my skin became "normal," tolerating all sorts of lotions and soaps. But it takes a while for the gut to heal and the skin to clear. I also respond to certain proteins that are like gluten, such as those in oats. I so hope you'll figure this out. (And feel free to send me private questions if you have any.)
Interesting – thanks! My sister has found she cannot tolerate any kind of grain or soy product. After I do my patch test, I’ll try an elimination diet.
Excellent piece on so many levels! I'm glad things are okay now. (There's nothing like intuition.)
Thank you, Thaisa. I still doubt my intuition too often—I should know better.
Your story is so similar to mine with the gluten problem! Since it was never a huge problem, no one ever thought of it - including me, while I suffered from gluten sensitivity my whole life, and was diagnosed with everything but. The itching was probably worse during holidays when I was eating lots of pastries. I was in my forties when a new doctor I started seeing said, "You know what, let me check for allergies, especially gluten." Since then, I feel so much better! For the longest time, no one knew much about gluten allergies, and I think even now it's hard to tell when you don't have the "usual" symptoms. Glad you figured it out! I know how much better you must feel! Thanks for sharing your story.
I suspect I had this intolerance my whole life, since I had eczema my whole life until I stopped eating gluten. So glad your doctor made that suggestion. And yes, I feel so much better. No more brain fog either. Thanks for sharing your story.
a friend’s son was misdiagnosed with IBS and they didn’t diagnose celiac disease until they were removing several feet of damaged intestine. this is a wealthy family, with access to healthcare.
i suffer from the hereditary form of a condition called Diabetes Insipidus. awkwardly named, it means that my kidneys don’t recognize anti diuretic hormone, or my brain doesn’t produce it properly. so i’m always dehydrated, always have to pee and cannot tolerate heat.
not only can’t i afford the horrifying test they use to diagnose the condition, but the treatment isn’t much better than the disease.
i rely on gatorade and other electrolyte formulas to stay healthy and pain free. plain water doesn’t always cut it. yet i was denied gatorade in the hospital because the staff didn’t believe me about the DI.
Thank you for sharing your story. I’m sorry about your condition. Being ill is bad enough, not being believed by your doctors is worse. So sorry they didn’t listen to you in the hospital. I hope it will be different if there’s a next time you need help.
You are so not alone. I am so so sorry you went through that. The blood test is not known to be reliable, if they ever tried that. I had the celiac biopsy to verify. And I found oats, even certified GF, can actually cause the issues in my body, too. I am one of those celiacs who cannot eat c gf oats or I continue to “mysteriously” rash, swell, itch, and hive unpredictably. Not as bad as with gluten, but my body tells me no go there. Thank you so much for sharing your story.
Thank you, Kristen. I, too, stay away from oats. My body just cannot digest them properly and they give me trouble. I’m surprised how many people suffer from similar problems and how few doctors suggest the culprit might be gluten. I hope more people will figure out what the underlying issue is of so many health problems.
Enjoyed meeting you last evening. I’ve had fiction published in Gargoyle. And by the Fiction Collective 2, who published Lidia Yuknavitch a long time ago. Do you have a novel in English. I’d love to trade books.
Nice meeting you indeed. I only have one novel out now for younger readers: A Whale in Paris (Simon & Schuster). And I have short story collection in English coming out in July.