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sisterlynr

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sisterlynr last won the day on February 2 2014

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  • Gender
    Female
  • Interests
    Piano and Hammond Organ
    Gardening
    Teaching music
  • Location
    Tampa, FL

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  1. icon Barbie Wickham reacted to a post in a topic: DH Photo Bank
  2. icon MGR reacted to a post in a topic: DH Photo Bank
  3. sisterlynr
    I asked my dermatologist about Aczone but since I was allergic to sulfa, said I couldn't tolerate it. From what I read it takes several weeks to ease the rash. .. like 2 - 3 months. Posting a web site if ok with the moderators? http://www.aczone.com
  4. sisterlynr
    I have had colon issues for years and family hx (1 uncle 3 aunts deceased) with colon cancer. Cousins with Celiac per biopsy. I have had a colonoscopy every other year since I was in my 30's. One year I had 3 colonoscopies and one that year included the EGD at the same time. They were always looking for cancer but only found red patches of inflammation...
  5. sisterlynr
    Well . . . I will discuss this with the GI and see what goes. I had a polyp removed and my esophagus stretched in 2010 so this isn't an elective procedure. My iron is low again and my PCP is adamant that I have both procedures. Thanks for pointing me to the information.
  6. sisterlynr
    I made notes on the Dapsone thread that I started. The itch is intense and when I first took Dapsone I had relief for about 4 months. The lesions started healing and the itching was reduced greatly. That is why they gave me the DH diagnosis. If your rash responds to Dapsone, it is a sure sign it is DH, per my doctors. My blood count came up and...
  7. sisterlynr
    I have a diagnosis of DH and Lupus but none of my doctors agree as to what is causing 'the rash'. One biopsy indicated a pointer to Lupus and none of the 8 biopsies showed DH although only 2 were done properly for DH. I am scheduled to meet a new GI in December and hopefully she will combine a Colonoscopy and EGD procedure, the same day. I will ask the...
  8. sisterlynr
    I had labs before my PCP ordered Dapsone and she ordered labs each month after starting the drug. I took .25 twice a day = 50 They then prescribed x 3 = 75 thinking I wasn't on a high enough dosage. I took x 4 a day = 100 and I became so sick, temp and fatigue that it was certain part of my rash was an allergic reaction. I was allergic to sulfa drugs and...
  9. sisterlynr
    I never had a problem having the prescription filled. I use Walgreen's pharmacy, here in Florida. They have had to order it a couple of times but it was always there the next day. No substitute that I know of but one of my doctor's mentioned they can use another drug. (didn't work as well) Check with your doctor about that. You may need to order...
  10. sisterlynr
    See a Dermatologist and ask them if they will do a biopsy of non affected skin and also a lesion with DIF. (Direct Immunofluoresence exam) Mine came back as Lupus although 2 doctors had determined the rash was DH. Actually they now feel I have Lupus and DH. Skin Lupus is itchy also and according to my Derms, the photos online (with the crooked little...
  11. sisterlynr
    Hmmmm, just seeing your remark about not being able to eat gluten-free, due to your work schedule. Here is what I did and maybe you will be able to sit down and figure out a workable plan. I drink a gluten free meal replacement each morning. Provide me with nutrients and is quick and easy. Have a salad for lunch with gluten-free dressing Vegetables...
  12. sisterlynr
    I am so sorry the Dapsone has made you sick. Were they taking blood draws every month? My doctor was following that plan but we just didn't realize I had developed an allergy. My blood counts were okay each month. Once the Dapsone was out of my system, I saw a huge improvement in my rash. I'm assuming the gluten-free diet was working for me. ...
  13. sisterlynr
    Squirmy, I went gluten-free on Oct. 20, 2012 and although I still have some rash, it is sooooo much better. I was bad and had a very small piece of cake, a couple bites of bread and crackers. I had a renewed outbreak just in the past 10 days but it is not as horrible as when I first broke out in Feb of 2012.
  14. sisterlynr
    Hello to all that have responded to my original message. Just an update on my condition. I was in ER around the end of May and the ER doctor was quite concerned that I had been broken out for so many months without a diagnosis. He called my medical group and did the ball ever start bouncing! My PCP called and wanted to see me the next day. My Dermatology...
  15. sisterlynr
    It is amazing how all these rashes look alike. My rash is just like yours but I am covered like a blanket of this. My scalp is in horrendous condition too. Down my legs, on the top of my feet. I feel for you! Miserable. I tried taking Dapsone which evidently isn't the answer for me. Have you asked or looked at Candida? I recently saw a D.O. that...
  16. sisterlynr
    Dapsone evidently works tremendously for some people. It is a Sulfa related drug so you would need to check that out. I am not responding to it but I faintly remember that I couldn't take Sulfa when I was younger for an infection. My specialist(s) that have patients on Dapsone tell me the rash does go away with DH patients. I have had such a trying...
  17. sisterlynr
    I have been on Dapsone for over 2 years.I did a lot better the first 6 months than I am now,I may need to increase my dose. The last 5 /6 months have been a nightmare. I have recently had additional family maters on me and I have not watched my diet like I should have. I am also allergic to corn and corn syrup is everywhere.my DH is on both arms and I am...
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