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

Comparison Pictures Not Better, Worse. Maybe Healing.
0

17 posts in this topic

8272156328_556896a357_m.jpgDay One of Dapsone Nov 27th 2012

8271089149_bbc9e80115_m.jpg 12/14/2012 Left Hand, after shower, moisturized.

8272156276_de8a490d45_m.jpg12/14/2012 Right Hand, after shower, moisturized.

They are spreading out some are flattening out but I cannot call this a win, is this how it heals?

0

Share this post


Link to post
Share on other sites


Ads by Google:

It's really hard to say. We are all different. Yours presents more like my hubs presents. His does that flattening but spreading out thing. When his does that things do get a little bit better but the danged stuff hangs on so freaking long. His go from that to crusting then flaring again then crusting then they get better but there are these deep seated ?bumps/lumps? under the skin & they will hang on a long, long time (weeks) & they will let loose small bits of the clear amber fluid & in sunlight it looks like there's glitter on the places. Then it will finally reach a point where it's just a slightly raised but fire engine red area & it burns more than itches. That hangs on for a month.

I'm just trying to be honest with you. I wish I could say you will be healed in days from this point but you would know that for a lie as soon as a few days passed & you weren't healed. You look like you might be going into a crusting phase.

It's so hard to say what point you're at as we are individuals & our dh is as individual as we are.

I so wish I had a definitive answer for you! :(

0

Share this post


Link to post
Share on other sites

It's really hard to say. We are all different. Yours presents more like my hubs presents. His does that flattening but spreading out thing. When his does that things do get a little bit better but the danged stuff hangs on so freaking long. His go from that to crusting then flaring again then crusting then they get better but there are these deep seated ?bumps/lumps? under the skin & they will hang on a long, long time (weeks) & they will let loose small bits of the clear amber fluid & in sunlight it looks like there's glitter on the places. Then it will finally reach a point where it's just a slightly raised but fire engine red area & it burns more than itches. That hangs on for a month.

I'm just trying to be honest with you. I wish I could say you will be healed in days from this point but you would know that for a lie as soon as a few days passed & you weren't healed. You look like you might be going into a crusting phase.

It's so hard to say what point you're at as we are individuals & our dh is as individual as we are.

I so wish I had a definitive answer for you! :(

It's worse at night. SO MUCH WORSE. The Dapsone makes it HURT more than itch. It takes the itch down but then it burns, stings and I am generally white knuckling it all night. My skin is so pissed it wants it's steroids. I knew, I didn't care. I just have to ride this part out before I can find out what I am really reacting to. My legs hurt so bad and are so tight standing up is worse than a second degree burn right now. The skin is that tight. Bending over is hell. My skin LOVED the Eucerin Calming body wash. It smelled like fish oil, I almost gagged. Looked at the bottle, hmmmm Omegas you say....well I've bathed in oil before so. I may consider oil cleaning. Using Hibiclins to kill germs then literally bathing(showering no tub) in Olive Oil.

8274499614_b59b4078cd_m.jpgThis is my rt. thigh and leg right now. I am so swollen it's sick. It looks like months since I've seen moisture but it's been two? hours. I am that dry that fast. But it is that angry red you were talking about, and man does it feel angry.

0

Share this post


Link to post
Share on other sites

I do understand. Now I AM crying a river. :( I know it's painful as all get out. Yes, you have to ride out the withdrawal from the steroids. And it's going to be hell. How about coating down with plain old fashioned Vaseline?

I can't stand that you are going through this. Sorry; I have to cry.

0

Share this post


Link to post
Share on other sites

I'm not sure it's the Dapsone making the burning. When my hubs is at this stage he gets terrible burning. More burning rather than itching. He describes it as feeling like a cigarette is burning him.

0

Share this post


Link to post
Share on other sites




I've said this before, but honestly, when I see those pictures I know I have no right to complain about ANY of my symptoms. My sick stomach is nothing. My trips to the bathroom are nothing. My psoriasis is a piece of cake. Even my jaw pain is nothing compared to what you folks have to put up with. My heart breaks for all of you who have DH. :( I wish I had a magic wand that could make you all better.

0

Share this post


Link to post
Share on other sites

Just those beautiful words you wrote make us better bartful! Thank you. :wub:

0

Share this post


Link to post
Share on other sites

Ann, I'm so sorry. My body is completely affected accept my face, but not to the same extent. And it is absolutely life changing. just want to say I hear you.

But squirming you posted somewhere that raisins have iodine? Can't find it now but did I read that correctly? I'm pretty much living on raisins.

0

Share this post


Link to post
Share on other sites

Yes, I did & that used to be on the thyca.org list & that's why I wouldn't eat them but thyca changed the list somewhere along the line & now they are not on the list. Soooooo????????

0

Share this post


Link to post
Share on other sites

I'm not sure it's the Dapsone making the burning. When my hubs is at this stage he gets terrible burning. More burning rather than itching. He describes it as feeling like a cigarette is burning him.

maybe it is just night time and I take the Dapsone at night. It does help the itch some.

0

Share this post


Link to post
Share on other sites

/hugs thank you every one of you. People are even arguing this is Lymes, or a Brown Recluse rash it's pathetic people will not accept BIG AG did this to me not BIG PHARMA or a bug. My own family thinks I am fine and able to make a 20hr each way road trip to a funeral. Yes it's my last grand parent but I cannot do this. I am not fit to fly and certainly not fit to sit on this rash that long....I am not stressing over this and making myself worse. He was 94 he had a good run and my family is retarded. Again thanks to everyone who sympathizes it helps....so much.

1

Share this post


Link to post
Share on other sites

RE: Vaseline Nursery Jelly is what we found and it had a scent, that made me sick to my stomach. The doctor said Aquaphor and wanted me to bathe in it but it's $16 for a 1lb tub that will last a few days. So I am using Aquaphor on the obviously crusted parts. The Doctor gave me sample tubes. Hubs is using it on my back. I am also using Eucerin intensive repair(sticky and glopy but good for my elbows) and Ecuercin intensive repair hand creme(AWESOME STUFF) and Cetaphil (thin good for spreading on my legs) everyday lotion for the back of my legs everytime I use the bathroom. Plus my mixture with Menthol in it.(cooling uses moisturel as a base) I got all these lotions for 1/2 price plus I had more coupons so the big bottles of Eucerin cost me $3.00 a piece. The BIG Cetaphil 6 bucks.

From what I gather Aquaphor is just expensive Vaseline and I will look into just plain Vaseline with NO scent. It didn't seem to work but then again the first time we used Aquaphor it didn't work now it's helping my back. So it's worth a shot since the expense is so much less. I am going to the store once I can tolerate a shower so I'll give it a shot today. I have BAD crusting on my feet so I want to try Vaseline under my socks but I almost fell on my arse last night in the rain. I was slipping around in my shoes so bad from using Aquaphor lol.

Thanks again.

0

Share this post


Link to post
Share on other sites

See? You can laugh at yourself. That's improvement! Hey, sometimes you just gotta laugh or we'll go nuts!

Keep pushing on through this hon.

Your family ---- sad that they don't "get it". Perhaps one day they will. Friends ---- you will lose some who just can't or won't "see" it. But if that's all it takes to make them run then they really weren't the kind of friends that count now are they?

0

Share this post


Link to post
Share on other sites

I learned this three years ago....again my own mother purposely sabotages me. My husband called her down and that was the last time I saw her. She wanted me to eat cake, it was my birthday....after all. Hubs went bat shit and she was like I'm her Mom and he was like and I've been at her bedside for the last decade where have you been? Friends or supposed friends have lied to me and I've gotten glutened from food they swore was safe. Yah I know about the mind games ppl play with you. People are terrified food can do this it kinda makes them insane and they do terrible things. No worries. I've lived through this I can heal this too.

0

Share this post


Link to post
Share on other sites

You have a wonderfully supportive husband! Yay for him & yay for you!!!!!!

That fact alone makes your journey so much easier. Some people don't get that kind of support from their spouse.

Don't forget to give him some extra special attention sometimes.

0

Share this post


Link to post
Share on other sites

You have a wonderfully supportive husband! Yay for him & yay for you!!!!!!

That fact alone makes your journey so much easier. Some people don't get that kind of support from their spouse.

Don't forget to give him some extra special attention sometimes.

I am plying him with video games and lots of alone boyz time. I know what that is like. When he has had enough and needs to decompress I am alone emotionally, no boxer in my corner and I see what a person with no support system has to fight with and I feel blessed when he helps again. Sadly, my illnesses gave him a stress ulcer. He HAS to take time away or he will worry himself sick. I make him do it. But I feel the loss....but he needs his time or he will go crazy. Marriage is about compromise we may not communicate perfectly but we do compromise.....It also helps we have been together 13 yrs, we know each other, we picked the right mate.

0

Share this post


Link to post
Share on other sites

And you have the most important rule down pat ---- compromise.

39 years here.

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
      104,344
    • Total Posts
      920,486
  • Topics

  • Posts

    • What's an " iodine test"?  Haven't heard doctors doing that to diagnose DH.
    • Hello! I've just been given my blood results and told they are highly suggestive of coeliacs but will have to wait till next month to see the gastroenterologist and who knows how much longer for a biopsy. My igA, igG and tissuetrans igA were all over 250 and tissuetrans igG was the only one that was normal. These results don't mean much to me yet but I'm told they are very high. I'm now quite fearful of how much damage I've gone to myself. I've had stomach problems for 25 years (just turned 40) and have often steered clear of too much bread and pasta for how bloated it made me feel but the symptoms were always vague and inconsistent so I kept eating. I had a couple of boats of gastro in the past few months (thanks kids) which I took a lot longer than normal to recover from which looking back may have been related. Then last Friday I had a blowout with wine, cheese, crackers, pizza and chocolate cake. I'm sure I've probably had blowouts like that before but I have never felt so sick before and am still slowly recovering. This is what finally prompted me to go back to my GP after being fobbed off so many times over the years. So I guess my question and my concern is whether there is still  chance of a false positive with levels like this? I worry what else it might be if not coeliac. I'm also worried that I may have done so much damage to myself that I will have several disorders going on! I'm also still recovering from last Friday and wondering when I'm going to feel better. I've stayed off gluten and dairy since my blood result a couple of days ago but feel like I'm allergic to food in general.  Thankyou!!    
    • Here's what the Klondike Bar makers say on the FAQ page of their website (August 2016): Are your products gluten free? Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding declaration of ingredients and allergens. We do not use the terms “Natural” or “Artificial Flavorings” to hide the existence of any allergens. RECIPES CAN CHANGE. We strongly recommend that allergic consumers refer to ingredient declarations EVERY TIME they purchase processed foods.
    • I tried the iodine test but couldn't leave it on very long because it itched too much. I left it on maybe 30 minutes lol. Did anyone try it and have the same response??
    • Had my scope today. Dr said my esophagus is damaged and stomach inflamed. Waiting on biopsy results. Taking protonic and flagyl and he said to go ahead and try cutting gluten out to see if that helps. Thanks for the feedback everyone! 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,415
    • Most Online
      1,763

    Newest Member
    Ails123
    Joined