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sisterlynr

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Everything posted by sisterlynr

  1. sisterlynr
    I stopped taking Dapsone. The 'chicken skin' itchy rash has cleared up. I still have some 'bumps' under the skin (not blisters with liquid) on both of my sides. The breakout on the outside of my thighs are drying and not bleeding. The 3 " open wounds (from scratching) has scabbed over and not oozing. I read on here that someone used rubbing alcohol...
  2. sisterlynr
    Thanks for your reply. About the blisters. Do they all actually have liquid in them? I have what looks like a small blister but when I scratch it, the top skin comes off. Now on my feet, the blister swells and I release the fluid with a sterile needle, apply alcohol, ointment and put on white socks until they heal. Most of my rash has been broken open...
  3. sisterlynr
    I posted one but can't remember how I did it. LOL Most upload photos to a photo site like photo bucket. DH presents symmetrically, ie both arms, both sides of back, both knees, etc.
  4. sisterlynr
    My daughter gets 3 different types of skin rashes when she is glutoned, the most frequent is eczema, the other is what I think might be DH. The next is one that just stumps me. But anyway, here is the best pic I can get from her last reaction- it is a mix of the DH-ish rash and the eczema. How do you tell that part of the rash is not DH? I see...
  5. sisterlynr
    Thank you Squirmy, Prickly and Tinpins for your concern and ((hugs)). I went to the pool only once and then the tanning stand-up booth, just one time. I really don't think either caused a bad reaction. My niece has been here and is preparing to join her husband, in Japan. Just been too busy for pool or tan time. If you look for skin lymphomas...
  6. sisterlynr
    Well ladies and gents . . . the more I read today the more discouragement I feel. Food and Dapsone after 8 months has not cleared this horrific rash nor stopped new lesions, blisters, itching, stinging, etc. I really feel good that Tinpins has found relief with diet alone. That is absolutely fantastic. I will renew my search for an answer for...
  7. sisterlynr
    BTW, I do think stress affects me too. I'm on SS Disability and not working so you would think, what stress? I worry about finances (had a great paying position) and there is a source of stress right now that I am able to stop. I just need to make a decision which would involve moving from this area. If that is what it takes, I'll do it, just plain...
  8. sisterlynr
    Thank you so much for your answers! I am starting to believe that I have been misdiagnosed with DH. I started a gluten free diet on 10/20/12 and .50 mg per day. I did feel and see a change to the condition of my rash but it never completely cleared up. The itching and burning seemed to subside to a point of tolerance. In February of 2013, I stopped...
  9. sisterlynr
    I have questions that I believe only people using Dapsone can answer. I am on 75 mg Dapsone daily. I started Dapsone and a gluten free and low iodine diet on 10/20/2012. Do you have new outbreaks while on Dapsone? Do you feel small bumps under your skin that do not break open? If you eat gluten, do you breakout? Do you still have episodes of...
  10. sisterlynr
    I have researching and made myself nervous today. I had NH Lymphoma in 2008, treated by chemo. When I first developed this rash 2 of my doctors thought it could be NH Lymphoma rash. With a good reaction to Dapsone and eating gluten-free they determined it was DH. Now I'm questioning this . . . I'm breaking out with new lesions even though taking Dapsone...
  11. sisterlynr
    Sorry, never had acne either. My rash initially presented on my scalp and feet.
  12. sisterlynr
    I went to the pool yesterday without too much stinging. I waited until 3:30 pm as this Florida sun is so strong. The sun actually was soothing; I didn't expect that reaction. I intend to go out in the mornings around 10 - 11 or 2 - 4 afternoons for more trial/error on this sun exposure. I can tolerate the water and with the Osteoarthritis and joint issues...
  13. sisterlynr
    This looks like my breakout of DH. Some may say it has to be on both sides of your body and it usually does present that way. I do have lesions on both sides of legs, knees, buttocks, arms, etc. except on the ones that are on the soles of my feet. Have you mentioned Celiac to your Dermatologist? She would need to biopsy an area next to a lesion and...
  14. sisterlynr
    Sometimes my scalp is horrible, like right now. I found out a few weeks ago I was eating some veggies that are high in iodine. Red food coloring has iodine . . . may have to sit down and write/print out a list so I won't forget!
  15. sisterlynr
    It is under Dermatitis Herpetiformis. Just scroll down and you may have to hit the arrow for more topics at the bottom of the page. Look for DH Photo Bank and the one I'm referring to is on page 4. The person that posted is SPJ&E. She posted about her infant with photos.
  16. sisterlynr
    There was a lady that posted on DH photos of her infant. You may want to check that area and see what she has posted. ~Lyn
  17. sisterlynr
    I googled about pool water and I think I'm going to visit the YMCA tomorrow. I refuse to let Celiac/DH rule my daily activities, other than my food intake. I saw my Rhuemy this morning for a follow-up. He asked to see my rash again. The belly is some better but still inflamed. He increased my Dapsone usage. I have had the blood test you mentioned...
  18. sisterlynr
    Hmmmm, from my personal experience, I've not had anypart of this rash disappear overnight! Maybe you have a gluten allergy, not DH? Btw, were you considering doing a biopsy on yourself? I really don't think that would be a good thing to do. You were asking about how deep the biopsy needed to be, how large and what type of container to use. I...
  19. sisterlynr
    Just hang in there! I know the relief of knowing what this and what will heal the condition. I had an appointment with my PCP Thursday. I am a bit down over the fact that I am taking Dapsone and still have this rash and eating gluten-free & limited iodine. I just recently realized some foods had iodine and think that is why I'm broken out. Good...
  20. sisterlynr
    I take Dapsone and benedryl . . . haven't tried Zrytec yet. Yes, I think stress flares my DH.
  21. sisterlynr
    Sounds like you may be Celiac. I have had blisters that oozed a substance in addition to welt like bumps that do not have liquid in them. DH is extremely itchy, stings and burns. When my lesions are healing I have the 'sunburned skin' feeling also. I take Dapsone which calms the rash and I also take Benedryl everyday. After all I've been through...
  22. sisterlynr
    I have to laugh! I am sitting on an ice pack, as I type. I have another one on my belly. I had not looked at the foods that are high in iodine and recently saw the list from Squirmy . . . . I have been eating high iodine foods and new blisters are popping up. I try to pop them without causing them to bleed. Once the fluid is released the itch seems to...
  23. sisterlynr
    Sure sounds and looks like you have found your answer, IMHO. This is a great place to find information about Celiac. I too was helped and stumbled onto this site by searching the net. I take Dapsone which has helped spare my sanity! There is also a topical form of Dapsone. . . you may consider this in addition to your diet. Wish you the best!
  24. sisterlynr
    There is a topical form of Dapsone. I had a severe breakout on my hands in 2010 but my doctor had no clue what the rash was, at that time. The breakout that started Feb of 2012 is still with me. I take Dapsone and am gluten and iodine free but missed knowing some foods were high in iodine.
  25. sisterlynr
    The usual levels for Hemoglobin is 12.0 - 15.5 some medical offices can vary. My Hemoglobin was 8 for most of 2012. In 2008 my Hemoglobin dropped to 7 and I was given a blood transfusion the next day. I was having chemo for NH Lymphoma then. The doctor asked for a Ferritin test to show how much Iron my body was storing. That level was low so I was...
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