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DH ,Lichen sclerosis and now oral Lichen planus

Bichongirl44

By Bichongirl44
in Dermatitis Herpetiformis

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Bichongirl44 Rookie
Bichongirl44
Posted

I am 74 yr old female, dx with DH 2011, after 7 yrs telling docs.... "its not eczema" so I am still on Dapsone 1 tab a day......I am very careful with my diet, but when I go out to eat I sometimes get caught....I have been having trouble with a sore mouth on and off for about 12 months and this last year getting very sore....doc. put me on anti fungal tabs o n 2 different occasions ...it didn't work,so eventually sent to ENT who has dx she thinks (waiting for results of biopsy) its Oral Lichen Planus....I was dx with Lichen sclerosis about 2012, and use a strong steroid cream, Clobetasol, which keeps it reasonably under control

Does anyone out there also have these 3 skin conditions?

Betty 

 

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GFinDC Veteran
GFinDC
Posted

Hi Betty,

Welcome to the forum! :)

I don't have DH myself, but we do have members with it who check in fairly often.  Hopefully you'll get responses from them.

In the meantime though, you can try searching for info using the magnifier near the top right side of the forum banner.  It should be under your user name.  You may find some old post by people with the conditions you are interested in.

I did a search on lichen planus below.  The first 5 or so links are advertisements, so ignore those.

https://www.celiac.com/search/?q=lichen planus&fromCSE=1

Here is a link to search on lichen sclerosis:

Advertisments are at the top also.

https://www.celiac.com/search/?q=lichen sclerosis&fromCSE=1

Bichongirl44 Rookie
Bichongirl44
Posted
  • Author

Thanks for your quick reply,GFinDC, I will have a look at those atricles you recommended

Betty 

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board Betty. Do be sure to read the Newbie 101 thread at the top of the Coping page. Being gluten free and staying safe is a bit more complicated than just the food we choose. While I don't have LP I do have DH.  I never took Dapsone even though my DH was severe before diagnosis. I had been on so many meds for so many years that I just wanted a life without pills. In addition the side effects can be nasty and I had some liver impact from the celiac so I didn't want to risk it. I do hope your doctor has been doing regular blood work to check liver function etc. I am going to post a link to the side effects so you and your doctor can decide if you want to stay on the drug.

https://www.drugs.com/sfx/dapsone-side-effects.html

There can be some rebounding of the DH, from what folks have stated, when the med is stopped. You still likely have antibodies lurking in and those need time to clear. Limiting iodine can help. I just switched from iodized salt and made sure there was none in any supplements but many have to avoid high iodine foods for a bit also. Iodine is an important nutrient so do be sure to add it back in when you stop getting new lesions.

There are folks who have gotten relief from LP gluten free so that may clear up for you on it's own. Have they done any follow-up blood work since your diagnosis to see if your antibody levels have gone down?  Be aware that if you are on or using steroid pills or creams that can cause a false negative with blood testing. If you levels need to be checked then you need to stop the cream for a time.

Please try to eat as much unprocessed food as you can for a bit and only eat out in places that you know for sure are using safe practices. I hope things improve for you soon.

 

 

  • 2 weeks later...
Bichongirl44 Rookie
Bichongirl44
Posted
  • Author

Thank you Ravenwood for your helpful and  informative reply... I have to have some blood tests next week......so I will keep your advice in mind....thanks again

Betty S

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