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sisterlynr

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Everything posted by sisterlynr

  1. sisterlynr
    I can see where Neurotin would help with the symptoms. My Dad had spinal stenois and his legs burned and stung. He took Neuotin. Just a word of caution while taking this drug. You have to wean off of it or can suffer seizures, which happened to my Dad once. It is helpful to neuropathy patients.
  2. sisterlynr
    There are time that .38 is looking better & better. Oh Squirmingitch ... put those thoughts way out of your mind! The topical Dapsone is ACZONE® and you may want to research to see if your doctor will prescribe it for you. When I asked for Dapsone, I mentioned the topical to my PCP and she didn't seem to recognize the name. Since she agreed to ...
  3. sisterlynr
    Oh my goodness! I had the 'flesh eating' lesions on my lower belly. I really think it was several lesions side by side that just grew into each other. They have healed and now are the dark purple color. I know you have been so strict on being gluten-free, I want to cry for you! Do you think your doctor will order light therapy for you? Wish...
  4. sisterlynr
    I am using shampoo and conditioner w/o wheat for an emulsifier. I do not eat soy now and that is hard on me as I love Asian and Chinese foods. Fortunately I have found a restaurant that does not use soy nor flour when preparing Asian food. I had hair loss many years ago but it wasn't due to male baldness, doctor thought it was stress loss. I figure...
  5. sisterlynr
    I know you all don't want to try Dapsone but I'm telling you, it has been a mind saver for me! I just received results from labs yesterday and everything checks out okay. I only have one area that is somewhat broken out. My lower back radiating to the sides. They are in the scabbed stage and if I would leave them alone . . . I do feel my skin is very...
  6. sisterlynr
    writer73 Someone posted a site that I have been reading. It may help you with your skin issues. Personally, I don't see how someone could say their DH was like acne. I am taking Dapsone because I told my PCP I could not take another day of the INTENSE itching, burning, stinging of this rash. You can read about Dapsone and I am being carefully monitored...
  7. sisterlynr
    Does not look like my rash. Have you checked online about Keratosis Pilaris? My nephew sometimes has a rash that appears the same as yours. May be due to gluten. . . .but not DH rash?
  8. sisterlynr
    Yes, painful, itchy and the whole nine yards. This picture was taken after I started healing with taking Dapsone and being gluten-free. Now (today) most of those are scarring nicely. I think the Dermatologist I see in February thinks the light therapy will aid in healing and have been told the light therapy is very soothing. Ready to go now! Had to wait...
  9. sisterlynr
    Thank you for both replies. I sure hope it stops soon. I am now mid 50's but not happy at all with this hair loss. I may have to research online to see if this is common for DH patients. I am still scheduled to see a new Dermatologist in February that is to use light therapy to help heal my skin. I'll be sure to ask him about the hair loss.
  10. sisterlynr
    I have Diabetes Type II and DH. I wonder if my rash isn't healing quickly could be attributed to Diabetes? Would Diabetes cause the rash to last longer even though I am taking Dapsone and am eating gluten-free? The rash is so improved with the dosage of Dapsone that I am taking but curious about other people and their reactions with DH and Diabetes....
  11. sisterlynr
    My hair has thinned so much that I'm getting worried. My hairbrush is full each time I brush my hair. Do any of you DH people have the same issue? When I peel off a scab from my scalp, there are usually 2 or 3 hair follicles that are attached. Does anyone have a suggestion to prevent hair loss? This head of hair is new from 2008 (chemo) and...
  12. sisterlynr
    I have blisters.
  13. sisterlynr
    DH presents as blisters on me.
  14. sisterlynr
    I had a bad reaction when I ate Quinoa. I did find an article that although it is gluten-free it is not recommended for Celiacs. I know I cannot eat Quinoa.
  15. sisterlynr
    Deleted pictures and my response per the request of SPJ&E
  16. sisterlynr
    Wow, there are many issues that can cause itchy skin w/o rash. My Dad had renal failure and would sit for hours rubbing his skin with those bath gloves. I wouldn't assume it as DH without seeing a rash. I have had Shingles and believe me they are usually along a nerve run and look like Chicken Pox . . . itchy but very sore to touch due in part to the...
  17. sisterlynr
    I am one that has the scalp covered with lesions from DH. I have found that using Scalpicin will relieve the itch, pronto.
  18. sisterlynr
    My PCP referred me to a Dermatologist for a biopsy. I actually had 3 biopsies but they were from the lesion itself. After research she ordered Dapsone for me and due to the good response, along with Gluten free diet, agrees I do have DH Celiac. I have a great PCP/Internal Med as a doctor! She has other patients with DH but told me I am the worst case...
  19. sisterlynr
    I found I was eating what I thought was corn chips and found out later the restaurant had changed to flour/corn chips. Maybe you can review your food intake? I was a salt freak and stopped using any salt unless it was sea salt w/o iodine. I am on Dapsone and I really feel it has been a life saver for me. I suffered for 7 months the intense itch, sting...
  20. sisterlynr
    I had many CT Scans with Iodine before, during and after chemo with no reaction. I then had a reaction of swelling and itching that affected the left side of my face. They escorted me to the infusion area and administered Benadryl via IV. I did not know I had DH then. I list IV Iodine contrast as an allergy now, per my doctor. I did go out online...
  21. sisterlynr
    When we go out to have dinner, I ask for their allergy menu. Red Lobster cleaned a grill for me, wore gloves and prepared salmon along with a salad. I had to wait a little longer than usual but it was worth it to know I wouldn't be cc'd. I don't even try to eat at the fast food place anymore.
  22. sisterlynr

    ARCHIVED Dapsone

    sisterlynr replied to hippo33's topic in Dermatitis Herpetiformis

    I don't think my PCP wants to up the dose of Dapsone. I am diabetic and maybe that has attributed to the lesions not healing as quickly. I know I've had the blisters break out for at least 30 years at different times and just think that with my low immune (NH Lymphoma) the DH just went wild this year.
  23. sisterlynr
    I started the Dapsone on Oct 20, 2012. I started the gluten-free diet on the same day. I have had monthly blood test and have had no problems. In fact, I was anemic/ low iron and it was normal on my last labs. I was expecting faster results but I could feel a difference in the intensity of the itch, sting, burn within 3 days. I am scheduled to see a...
  24. sisterlynr

    ARCHIVED Dapsone

    sisterlynr replied to hippo33's topic in Dermatitis Herpetiformis

    WOW. . . you responded quickly to Dapsone! I've been on it since 10/20/12 and still have lesions/blisters. The Dapsone has made my symptoms tolerable. I've also been gluten-free from the same date. I can tell when I've eaten gluten (by error) I have blisters come back and itching but they seem to resolve in a week.
  25. sisterlynr
    I first had blisters on the soles of my R foot and had no clue it was DH and neither did many doctors. I would sterilize a needle and puncture the blister to release the fluid. It DID make the itch not as bad. Yes, mine would refill and I would repeat and I also applied athletics foot cream. The salve dried the blister and it would peel as it healed....
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