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Scalp Blisters

irish11

By irish11
in Dermatitis Herpetiformis

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irish11 Apprentice
irish11
Posted

Hi there.

 

Irish here.  I finally got a real dapsone prescription and have been on it for about a week.

 

My question is, is it normal for them to be squishing out as much as ever? Seems like they are softer now, not as hard, but continuing....I have been on 100 mg. for about a week.  Maybe too soon?

 

seems the face ones are better, and the back ones are medium right now...

 

I just don't know if thats normal or not.  Should it be working by now?

 

It seems like my whole scalp has them....first left side then right side, then down the middle of my head then left then right, then lower area (where they accumulate alot, which i attribute to having your head up all day and they just accumulate there?)

 

the scalp ones are my worst thing right now, followed by back.....

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ravenwoodglass Mentor
ravenwoodglass
Posted

How long have you been gluten free? Have you eliminated gluten ingredients from hair care products? It takes a while for the antibodies to leave the skin. I imagine it would take a while to heal even with the dapsone. I don't know for sure as I wouldn't let them give me a script for it. Hopefully someone who has taken it will reply with a time frame for you soon.

I hope you get some relief soon. Be sure not to skip any of the blood work that you need to have every few weeks to check your liver function isn't being impacted by the drug. 

irish11 Apprentice
irish11
Posted
  • Author

Hi Ravenwood.  On april 23 it will be 3 months gluten-free.

 

Today I was horribly blistered on my back again.  I know its not gluten because I am so tired of it, I'm pretty much doing paleo diet right now.  In other words NOTHING.  no soy, no grains at all, no dairy...nothing....im existing barely on  plain unflavored protein and fruit and veggies, and they still come.  What a horrendous disease this is truly.  just horrendous.  Wishing for some relief....I almost don't believe any will come.  But I keep going.  What else can i do?  I'm 5'8.  When i went gluten-free i was 152 pounds, today i am 133 pounds.

 

And nothing works.  I've considered not eating at all but I guess that would be anorexic.  I look it anyway pretty much, ha.

 

Its all i can do to get to work every day...i barely can do it.  I never want to do it I am in so much pain and embarrassment.  But what can I do?  I need the job.  Hopefully someday...one can dream right?

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