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Finally on dapsone

Laurel F

By Laurel F
in Dermatitis Herpetiformis

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Laurel F Rookie
Laurel F
Posted

Hi again,

Despite the recent negative tests, the dr put me on dapsone. The itch has mostly gone away. New blisters are no longer forming. However, I have two questions (maybe better for the dh forum?). How long before the red dots go away? They have faded significantly but are still visible. Also, should I be concerned about dapsone giving me a headache? Just had a blood test (been on it a week) and so far, bloodwork looks ok.

 

Thanks!

Laurel

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Alaskaguy Enthusiast
Alaskaguy
Posted

Laurel, I did/do have DH like you, but I was never on Dapsone, so I cannot speak to your particular case.  However, after going "conventional" gluten-free (which proved to be not quite rigorous enough for me), my initially red and purple areas from the DH did slowly and then eventually completely fade away.  In the previously worst spots, I would say that the complete process of disappearing might have taken as much as 8 or 9 months --- that was for the areas that had been continuously blistered and rashy for several years.  But most of the formerly discolored areas were gone after about four months.  I hope that that does not discourage you too much.

cyclinglady Grand Master
cyclinglady
Posted

You should let your doctor know that you are experiencing headaches while on this drug.  He or She can report this to the FDA.   Every drug has risks and benefits and should be carefully weighed. You should ask your pharmacist or search onl8ne for other side effects that may crop up.  

This drug will most likely not be very effective if you continue to consume gluten.  (I recall that it would be hard for you to be gluten free because your son has allergies and his diet includes gluten and that you had positive blood tests and intestinal biopsies a few years back.)    Did you decide to go gluten free too?  That might speed up healing and allow you to get off Dapsone sooner. 

Laurel F Rookie
Laurel F
Posted
  • Author

Hi, 

Yes I have gone gluten-free. It's been almost a month without gluten. In addition to the rash getting better, I no longer have the occasional stool issues and seem to be a lot less tired. Also, the rosacea on my face has cleared up. So despite what all the tests may or may not say, I am convinced that I have a problem with gluten. Despite it being hard, I was suffering too much to consider going back. It's funny how I didn't realize all the symptoms I was having until they went away.

Now just hoping the blotches from the rash will fade soon.

Thanks again for all your support!

cyclinglady Grand Master
cyclinglady
Posted

Awesome!  I am so happy for you!  

Once I went Gluten Free I noticed that lots of little things went away that I did not even know were attributed to celiac disease.  This disease is crazy, but I thankful that there is treatment.  

 

squirmingitch Veteran
squirmingitch
Posted
6 hours ago, Laurel F said:

Hi, 

Yes I have gone gluten-free. It's been almost a month without gluten. In addition to the rash getting better, I no longer have the occasional stool issues and seem to be a lot less tired. Also, the rosacea on my face has cleared up. So despite what all the tests may or may not say, I am convinced that I have a problem with gluten. Despite it being hard, I was suffering too much to consider going back. It's funny how I didn't realize all the symptoms I was having until they went away.

Now just hoping the blotches from the rash will fade soon.

Thanks again for all your support!

Excellent! 

Yes, we often tell people they will be surprised at the things that resolve that they didn't think they actually had a problem with.

Actually, I can't really say how long it might be for the spots to fade away. Everyone is different. In my case, I just had too many in too many places & re-do, re-do, re-do. I couldn't have kept track. But I can say they WILL go away.

Alaskaguy Enthusiast
Alaskaguy
Posted
46 minutes ago, squirmingitch said:

Excellent! 

Yes, we often tell people they will be surprised at the things that resolve that they didn't think they actually had a problem with.

That is mirrored in my own experience, after I went gluten-free early last year, and for maybe the first time in my life, I had NORMAL bowel movements --- without all the straining, and cramping and discomfort, and having to routinely spend 30 minutes or more on the toilet.  For my whole life, I didn't even really question it (I mean, how many people really talk about the details of their bowel movements?), and I just assumed that "that was just how my system was".  But not long after going gluten-free, that all cleared up, and now I never have time to even start to read anything while sitting on the john (as I used to always do on the toilet) before the deed is done.

Also, for several years prior to going gluten-free, I frequently if not almost always would wake up with runny and itchy eyes, and a runny nose, almost like the symptoms of a cold (which would fade as the morning went on).  But again, that has all mostly passed --- except for odd days in the last few months, while I am simultaneously starting to have a flare-up of the DH.

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