Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Medication Other Than Dapsone? Please Help!

SadandItchy

By SadandItchy
in Dermatitis Herpetiformis

Recommended Posts

SadandItchy Newbie
SadandItchy
Posted

Hi. After itching most of my life and being diagnosted with excema,dairy sensitivity, chronic hives.... I finally figured out I had DH last year at 38 yrs old. I was diagnosted through a blood test and then by gluten elimination. I am doing much better. The rash symptoms are much better. But I have good days and bad. I still suffer with the big itchy blisters to varying degrees. I am sooooo tired of looking like this. It has effected every part of my life. I broke down and took Dapsone. It gives me headaches that are not tolerable. I am looking for another medication. Can anyone recommend what has worked for you. I am desperate. :(

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Alternative treatment: Open Original Shared Link

squirmingitch Veteran
squirmingitch
Posted

OMG!!!!!!!!!!!!!!!!!!!

They screwed up when they wrote that! It says:

When dermatitis herpetiformis is well-controlled, attempts can be made to taper off dapsone and perhaps attempt a diet with gluten.

NOOOOOOOOOOOOOOOOOOOOOOO, you should NOT attempt a diet with gluten!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

pricklypear1971 Community Regular
pricklypear1971
Posted

OMG!!!!!!!!!!!!!!!!!!!

They screwed up when they wrote that! It says:

When dermatitis herpetiformis is well-controlled, attempts can be made to taper off dapsone and perhaps attempt a diet with gluten.

NOOOOOOOOOOOOOOOOOOOOOOO, you should NOT attempt a diet with gluten!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I agree that's an erroneous statement but I linked to that to show alternative medical treatments.

And btw that's not the only stupid thing I've seen written about DH. The stupidity is incredulous and plentiful.

squirmingitch Veteran
squirmingitch
Posted

I agree that's an erroneous statement but I linked to that to show alternative medical treatments.

And btw that's not the only stupid thing I've seen written about DH. The stupidity is incredulous and plentiful.

Oh, I understand completely. I wasn't saying you did a bad thing. Yes, stupid, stupid stuff written about dh even from some of the leading celiac centers. And contradictory! We get awfully down on derms but when you look at some of the erroneous info. out there; is it any wonder why they don't know what they are doing?

rosetapper23 Explorer
rosetapper23
Posted

Have you tried eliminating iodine yet? It can make all the difference!

Also, if the blistering continues, you might have it tested for staph. I recently went through months of having DH that wouldn't stop blistering...only to find out that the DH had become infected with staph. Staph has the same symptoms (blistering, peeling, and then more blistering and peeling).

Really good scratcher Newbie
Really good scratcher
Posted

I was put on Dapsone for a short while, and couldn't tolerate it well at all and was taken off Dapsone. Now i am on an Immunosuppressant drug called Cellcept. My docs/derms all agree I have an Auto Immune disorder. Cellcept is what I am currently on, but I've only been on it three days. So far so good, but it's real early yet. I am hoping this and going Gluten Free will ease my problems.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Really good scratcher Newbie
Really good scratcher
Posted

I was put on Dapsone for a short while, and couldn't tolerate it well at all and was taken off Dapsone. Now i am on an Immunosuppressant drug called Cellcept. My docs/derms all agree I have an Auto Immune disorder. Cellcept is what I am currently on, but I've only been on it three days. So far so good, but it's real early yet. I am hoping this and going Gluten Free will ease my problems.

tlcounts Newbie
tlcounts
Posted

My dermatologist recommended Benadryl for the itch. Don't think it will have much effect on the rash per say but it should help reduce the itch at least. He gave me a prescription for a Benadryl type med but personally I prefer Zrytec, doesn't make you as sleepy and you can take it daily with out too much trouble.

You probably already know this but he also said a sign of DH is that it doesn't respond well to any steroid creams, unfortunately.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,990
    • Most Online (within 30 mins)
      7,748
    ZENken
    Newest Member
    ZENken
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Scott Adams · Posted

      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      New Celiac Mama in My 30s

      By Scott Adams · Posted

      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Celiac and dermatitis herpetiformis has taken Me from Me

      By SusanJ · Posted

      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.