Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Dapson
0

9 posts in this topic

so... i've been on dapsone over a year now... but about a month ago i got my blood drawn and my liver enzymes were elevated... so i went back to get it drawn again about 2 weeks later and the level was doubled from before... so i'm not allowed to take dapsone anymore, atleast until that level gets down again... and i've been off of it for four days and already i look as bad as before i even knew i had DH... huge rashes and blisters all over my back, face, chest, arms, scalp, and other areas... use your imagination. anyone know of anything i can do in the meantime? i can't sleep at night because it itches so bad, a couple nights ago i was up for 2 and a half hours in the middle of the night scratching til it bled so that it didn't itch anymore, it just stung from bleeding, and i could deal with that more easily. i've been taking benadryl the past 2 nights just because it knocks me out so bad that i can't stay awake anyway, but i've been tired all the time that i'm awake too because it knocks me out good... even taking half a pill at a time knocks me out. the dermatologist today prescribed me some other drug that starts w/ sulfa, there's about 8 more letters after that but i can't remember what it's called for sure, but no pharmicies in town carry it b/c nobody takes it, so it's gonna be days until i get that anyway. anyone know what I can do in the meantime? or if the other drug works? i just can't stand the itching and i don't wanna scar myself everywhere from scratching so much..... ahhhhhhh

0

Share this post


Link to post
Share on other sites


Ads by Google:

Unfortunately I know of only three things -- dapsone, the other drug you've ordered, and being completely gluten-free. But the gluten-free route takes a while. Are you gluten free? If not, you should be.

richard

0

Share this post


Link to post
Share on other sites

I've been gluten-free since november 2002... i mean i'm not perfect w/ the diet, i try so hard but it's like something seems to slip every now and then. i have celiac disease too, but i do'nt have as bad symptoms as some people but yeah i know when i mess up most times... as in tonight, the movie popcorn had something in it i think, haven't been feeling so great. but yeah.. i still break out

0

Share this post


Link to post
Share on other sites

As I understand it, if you're making even small mistakes too often, you'll continue to break out. Your only real solution is to get real strict about gluten. Also, for a while (but not forever) yoiu need to avoid iodine. This primarily means no iodized salt (kosher is OK) and no shellfish.

richard

0

Share this post


Link to post
Share on other sites

I know exactly what you are going through. I have had celiac disease for 22 years and was recently diagnosed with DH. It took them 6 months to do so. The derm I have been seeing has me on 100mg of dapsone. He also put me on prednisone for 12 days to get me over the hurdle. I found that sleeping with a frozen gel pack helped some, or cool almost cold showers helped also. The prednisone really helped me a lot. But the main thing is cross contamination. I was never aware of how much you can get. I am still breaking out even on the dapsone. But I have heard it takes quite awhile to remove all gluten from your system.

Hang in there it does get better.

0

Share this post


Link to post
Share on other sites




Hi,

I'm struggling with DH breaking out since i started taking estrogen, progesterone for menopausal symptoms. This time it broke out in my scalp. Never had it there before.

Wanted t tell you that FLAX oil pills help it to go away for a few hours and are without side effects except they loosen up ones stool.

Try one and don't be afraid to increase the dose to 2.

Hope it helps.

Elkris

0

Share this post


Link to post
Share on other sites

Thanks guys... I just went ahead and started taking my dapsone again until I get the other medicine in. Had to sign up for some study in New Jersey to get the medicine, but it's completely free that way anyway... but yeah i've been on dapsone for almost 2 years, what's another week... but man, it was amazing the difference when I stopped taking it, and also the difference since I just started taking it again 2 days ago. I broke out like THAT... had huge blister clusters all over my back and armpits, and my scalp was bad too... I couldn't sleep at night... I got to the point where I took a bath towel and put it on my bed so I could lay on it, that way if my back itched I just rubbed on it and the texture scratched all the itches at the same time... felt quite good for a couple seconds till the amount of itching became unbearable again... but just the fact that I slept on the towel w/ its texture did make it better... okay so maybe i'm weird for coming up w/ that but it helped a little bit... but i'm almost completely cleared up again (still itches but it's not nearly the same) but I do get the new medicine in a few days. Meanwhile I am going to get stricter on the diet.. if I go out to eat and I"m questioning something then i will get it more times than not. For instance I just found out the sauce on the enchiladas that I always get at a local mexican place had flour in it... and i eat there a lot. it was quite sad though, I asked the waiter, who didn't konw, and he got the manager, who told me the sauce was okay, then went back to the chef after that and found out that it wasn't and came and let me know right away.. but i've got that taken care of at least. well while i'm typing a book here i wanted to ask.. does anyone w/ celiac disease ever still get the abdominal discomfort even when they KNOW they are eating okay? Whenever my mom cooks dinner (i'm moving out in 9 days for college) she is SO careful with gluten, she doesn't even keep any in the house and all our meals are completely gluten-free, but I still get the discomfort after eating every now and then, just wondering if anyone would know why? I honestly feel sometimes that I was better off before i knew i had celiac disease in relation to that part. I never did get stomachaches or anything when I wasn't diagnosed, but I only get it now when i DO eat gluten-free. I don't know if that's because my intestines are okay now and are more sensitive because they're not getting the crap (no pun intended) pounded out of them by gluten and all... but i'm quite uncomfortable still. oh well... i'm probably gonna post this latter part again on another forum just b/c this forum is for DH only but if anyone has anything to say about that it'd be cool- thanks

jonathan

0

Share this post


Link to post
Share on other sites

I went to my dermatologist this morning and he was amazed that my DH was completely gone. He asked me if I was gluten-free and seemed amazed that I was. He was the one who told me the best cure for DH was to go gluten-free for life. In my experience, though, I have found out that a lot of creams, shampoos, detergents, etc. have such strong ingredients, that they affect my skin too. I found wheat protein in many sources. Have you ruled out everything that goes on your body? Sunscreens, fabric softeners, hair sprays and gels? I switched detergents and fabric softeners to the free and clear kind, I got rid of the shampoo with wheat, too. If your DH is so bad that you can't sleep and you're truly gluten-free, there must be something else affecting you. Good luck in college!

0

Share this post


Link to post
Share on other sites

A soak in a tub with Dreft, yes the baby clothes detergent it helpful. I only have a few blisters on my hands and lower arms... They seem to have gotten a bit worse after going gluten-free about 2 weeks ago. Not a bad case though... But I add Dreft liquid to a tub of water... its the best bubble bath in the world, cant take regular bubble bath. This stuff softens and eases the itching. It may be my imagination but it seems to heal them faster... Add about 1/2 capful to running water. Even if you dont have these, its glorious!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined