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sisterlynr

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Everything posted by sisterlynr

  1. 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
  2. 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...
  3. 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.
  4. 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...
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. 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...
  10. 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. ...
  11. 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.
  12. 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...
  13. 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...
  14. 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...
  15. 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...
  16. sisterlynr
    I recently ended a Candida 14 day testing to see if my rash was not DH but a systemic Candida outbreak. My lymphocytes have not been increased. I took Diflucan for 14 days, did not have sugar, took Garlic 3 x a day, took Oil of Oregano 3 x a day and was on a very strict intake of foods. Low starch and only was to eat organic beef or chicken and vegetables...
  17. sisterlynr
    Being treated by a new Dermatologist. He took 2 punch biopsies, gave me a cream to heal the open lesions and another to help with the itching. He told me to continue Zrytec and Zantac and use Sarna and Vaseline to help with the itching and to keep my skin moist. I had been to the ER as the lesion on my foot was quite nasty, painful and my foot was swollen...
  18. sisterlynr
    Anti-biotic usage can cause yeast infections. Many times females will have vag yeast and a single dose of Diflucan will clear the infection. The tongue will also show a yeast infection by being coated white. You sure can have a rash from systemic yeast and it is itchy, you can google yeast rash for images. I just ended a yeast 'flush' by eating high...
  19. sisterlynr
    I agree about the derms. . . I expect them to 'know it all' beginning to think it is just trial and error. Oddly enough, no one has given me a steroid, probably because of my high sugar levels. I am really worried this evening. I weighed and have lost another 4 lbs during this past week. That is not normal for me. In 2008 I dropped lbs like this...
  20. sisterlynr
    I will not accept a doctor not taking the time to explain to me. I am paying the bill (or my ins is) and I've never met one that would not sit down with me. I have seen a minimum of 12 doctors since February of this year and not one has not been denied an explanation and of course, always give me a report. I worked for 6 years at a hospital, 3 years...
  21. sisterlynr
    Thanks for your reply about your daughter. I have posted just this morning with a ? of DH. I do have blood relatives with Celiac and one cousin does have the scalp breakout. I am the only one that has this horrible rash. My cousin did not have a positive blood test but had a endoscopy that showed the villi damage and she had anemia and iron def. I...
  22. sisterlynr
    Go for it . . . I've not had success with Dapsone or being gluten-free since October of 2012. Had this horrible rash from head to my feet since February 27, 2012. I know that date! My sister was here for vacation and flew home the same day that I broke out. I just posted about my experience this morning. Hey, if this isn't responding to gluten-free...
  23. sisterlynr
    I had a bit of shrinkage show on my brain MRI. Doctor told me they see this with Alzheimer's (my Mother had this) and it is a bit scary. He also mentioned MS but . . . hey, I AM NOT a doctor. You should ask him to explain every detail of your scans. I tell each doctor I need an explanation in 'normal' terms. We go line by line and until I'm like...
  24. sisterlynr
    Here we go again! I stopped taking Dapsone on June 10th after an increase of rash. Maybe I'm allergic to Dapsone? Maybe this isn't DH? I was seen by a new doctor Friday. First let me say he has diagnosed Celiac for many patients that had fallen through the cracks by their regular doctors. He was knowledgeable of Celiac and DH but had never seen...
  25. sisterlynr
    I'm following your rubbing alcohol treatment. . . I stopped taking Dapsone, I think I had a Dapsone rash in addition to the DH. I have question. About the rash . . . is every lesion a blister with fluid? I'm still trying to track down all I can to present to my doctors. I have a DH diagnosis but not every lesion had fluid. I scratched and the skin...
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