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
      131,542
    • Most Online (within 30 mins)
      7,748
    Jacqueline Dee
    Newest Member
    Jacqueline Dee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      That sounds so very likely in my case! I will absolutely ask my doctor on my next bone check coming up in March... Thanks a lot! 
    • trents
      Unusual bright yellow but odourless discharge

      By trents · Posted

      Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency of intake amounts in the diet. Calcium needs an acidic environment to be absorbed. This is why so many people on PPIs develop osteoporosis. The PPIs raise gut pH. And some people have high gut PH for other reasons. Low pH equates to a more acidic environment whereas high pH equates to a more basic (less acidic) environment.
    • Celiac50
      Unusual bright yellow but odourless discharge

      By Celiac50 · Posted

      Kind thanks for all this valuable information! Since my Folate was/is low and also my Calcium, there IS a chance I am low in B vitamins... My doctor only measured the first two, oh and Zinc as I has twisted her arm and guess what, that was mega low too. So who knows, until I get myself tested properly, what else I am deficient in... I did a hair mineral test recently and it said to avoid All sources of Calcium. But this is confusing for me as my Ca is so low and I have osteoporosis because of this. It is my Adjusted Ca that is on the higher side and shouldn't be. So am not sure why the mineral test showed high Ca (well, it was medium in the test but relative to my lowish Magnesium, also via hair sample, it was high I was told). But anyway, thanks again for the VitB download, I will look into this most certainly!
×
×
  • 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.