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Anyone Have Dh Flare Up From Tylenol Pm?!
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Hi everyone,

I am brand new to this forum. I joined because I am freaking out about a DH flare up and I do not know what the heck is causing it! I am very meticulous about avoiding gluten. I only use gluten-free lotion, shampoo, everything! I am 8 months pregnant and all of a sudden am having a terrible DH flare up on my legs (which is usually where it happens). I have been having back pain and trouble sleeping bc of the pregnancy and my doc suggested I take Tylenol pm every night to help me sleep. I have read that NSAIDs aggravate DH, but I thought tylenol was safe for DH. Does anyone else have this problem!? Is this normal?! I don't know what else it could be.

Please help!

-Itchypregosaurus!

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Hi itchypregosaurus. Welcome to the board.

Tylenol seems to be the safest for us of the NSAID's but I find that even it aggravates my dh if I'm not very, very judicious in my use of it. I never use Tylenol PM so I can't speak for that specifically but plain Tylenol affects me if I take them day after day.

Also, I've read in a lot of the medical literature that pregnancy can make the dh flare like rip. Furthermore, that you may not have had the dh flare with earlier pregnancies but then you get pregnant with another child & it pops up. The stuff is vexing to be sure!

I'm so sorry this is happening to you. What about asking your doc about strong Benadryl to sort of knock you out at night?

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Just saw your post on the photo bank. As far as chlorine goes I couldn't say. We have city water right now & so I'm getting chlorinated but I have not been in a pool or hot tub. I also haven't been showering in anything but city water so have no comparison to non chlorinated water. Interesting thought though.

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Just saw your post on the photo bank. As far as chlorine goes I couldn't say. We have city water right now & so I'm getting chlorinated but I have not been in a pool or hot tub. I also haven't been showering in anything but city water so have no comparison to non chlorinated water. Interesting thought though.

Thanks for replying! I stopped taking the Tylenol PM. I'm definitely going to ask about something else to help me sleep. I stumbled on the chlorine info a while back. The research said that heavily chlorinated pools can cause DH flare ups- and is sometimes linked to causing the onset DH symptoms. I thought this was very interesting bc DH first presented itself when I was 25 after a long day at the pool. I went first thing in the morning to get some sun and I remember thinking the pool had just been treated bc the chlorine smell was very strong. Later that day I had my first DH outbreak. Of course I was misdiagnosed for two freakin' years but finally I have it mostly under control. That summer was when I started drinking beer too. Prior to that I only drank wine and girly drinks. I often wonder if the increase of gluten from the beer was also a culprit. I never had any other indications that gluten was a problem for me. I've been Gluten-Free now for over a year. I hate that I can't ever be completely cured. It's really frustrating. Anyway, I've tried the chlorine theory twice and both times I had a flare up :/ One more thing I have to avoid.

It is so great to be on this forum and read other people's stories and struggles of the same condition. I haven't met anyone with DH and I find that explaining it to people is useless bc no one can relate.

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Interesting Brandi; my strongest gut reactions were always from beer also. As a teen experimenting with drinking I quickly decided beer was NOT the drink for me as I would have violent GI reactions from it --- screaming pain/cramps in the gut & D.

Do you think you can find that info. on chlorine again? It would be great if you could & then post a link here. I haven't come across that info. & would be very interested in reading it.

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http://www.cureceliacdisease.org/archives/faq/does-chlorine-cause-a-reaction-for-those-with-celiac-disease-especially-those-with-dermatitis-herpetiformis-dh

"Does chlorine cause a reaction for those with celiac disease, especially those with dermatitis herpetiformis (DH)?

No such link between the two has been researched or reported."

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http://www.curecelia...erpetiformis-dh

"Does chlorine cause a reaction for those with celiac disease, especially those with dermatitis herpetiformis (DH)?

No such link between the two has been researched or reported."

I found this same website FAQ when I was doing my research. I have found several other DH sufferer comments on forums about highly chlorinated pools triggering a DH outbreak. Personally, I have tested this theory twice and both times it was very apparent that chlorine without a doubt causes a flare up. Although, there isn't any peer reviewed reseach on the subject, the only evidence is personal testimonies.

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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