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moneek

Member Since 21 Oct 2012
Offline Last Active Jan 24 2013 05:53 PM
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Posts I've Made

In Topic: DH Photo Bank

04 January 2013 - 04:02 AM

Yes, moneek. The dh photo bank is pretty much so that people coming on the site can go directly to it to see photos of dh in it's many, & varied presentations. It was not intended for a discussion thread other than a short comment here or there. New people wanting to look at or compare photos would have to wade through a whole bunch of discussion in order to get to the next photos posted. Also, discussions such as iodine or thyroid meds affecting dh or anything else would be well served in threads with the subject in the subject line to make them easier for people to access when they are wanting to know about that aspect. Also then, it makes things easier to search. If one put iodine or thyroid meds into the search function it would not come up with the dh photo bank as a major hit.

Hey, I'm not trying to be a downer here. I just am trying to keep people from getting discouraged when they are looking for photos or info. on iodine or on thyroid meds or this or that. I remember all too well when I was a newbie & had gluten brain fog ---- I wanted --- NO , I NEEDED the quickest way possible to access the info. I was looking for & wading through a long discussion to get to another batch of photos would throw me off. I think we all want to help as many people as possible to not suffer with this insane itch & that is what I'm aiming at with this point.

Bottom line ---- it doesn't matter what I say. Sooner or later one of the moderators is going to come along & see all the discussion on this thread, split the discussion part out, re-title it appropriately like "managing dh & thyroid meds; a balancing act" & move the discussion part with the new title.
Example: Darkfire Ann posted photos on here when she first come on & then discussion ensued. One of the moderators came along & saw it & split it out & moved it. Too bad the photos got moved with it. I will ask Darkfire Ann to repost her photos to this thread so that ppl looking for photos can find them. See:
http://www.celiac.co...-skin-shedding/


thanks for squashing the conversation and alienating other memebers. (not)
I am leaving this forum, for just this reason.
I have ideas to contribute, things to discuss, photos to share, but with the obnoxious attitude that prevails here, I am not able to bear more stress.

In Topic: Meds For Dh - Dapsone And Others

30 December 2012 - 05:21 PM

Yes, I have it bad. I see a new dermatologist from University S Florida on Dec 6th. I see my PCP this coming Tues. I really am healing. :) The ones from my wrist to elbow have healed and just have dark spots, no itch. From my elbow to shoulder is trying to heal but I keep taking off the scabs. Not really itching there but feel the dryness. The lesions on both knees have healed just leaving discoloration. The sole of my right foot has healed completely. I guess just the stomach, back, buttocks, chest and scalp still have sensations. Like sitting here, I am aware that my skin feels tight and I could scratch my belly BUT I can control the urge. Dapsone has not taken that away completely with 2 a day = 50. It is so hard not to pick at my scalp :( the skin is really rough with scabs. I see such great improvement. Thankful for that!

My family keeps reminding me how much better I am. They have been so patient with me during the past 10 months, helping me apply the ointments to my back.

I've decided to eat at home unless there is a special occasion so I can know for sure, what I am eating. Thank you so much for your advice and response. :)


I only eat at home as well after getting cross-contaminated twice (I think so, anyway); it's difficult socially as most folks just don't really understand. They think, just a little bread, just one cookie, or whatever. I find it's easier to just be a bit isolated at the moment until I feel stronger.

.... m

In Topic: Meds For Dh - Dapsone And Others

30 December 2012 - 05:18 PM

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 new Dermatologist in Feb to have light therapy too. I was to the point that I literally begged my PCP to allow me to try the Dapsone. She was most concerned that my blood was already low and I could possibly need a transfusion. I told her. . . hey, that's ok . . had blood transfusions during chemo and I'd rather have a transfusion than to continue to itch so badly! I'm due back for a check up next week. She only prescribes a month at a time so I HAVE to check in with her. . . . :rolleyes:


that's encouraging about the relief you got from Dapsone; I will find out on Wednesday if the MDs think it's appropriate for me.

Happy 2013!! I hope it's a better year than this one was.

...m

In Topic: Meds For Dh - Dapsone And Others

30 December 2012 - 04:58 AM

So sorry for the loss of your home! I believe when I become anxious the remaining lesions itch more. I have pics on photo bucket too, in past postings.

Your earlier photos are so much like my rash. I broke out severely on 3/1/12 and started Dapsone & gluten free on 10/20/12 without a diagnosis. You can look at my photos and history on the forum. When I saw your outbreak from July, I cringed remembering the sting, burn and itch. I am 100% gluten free but when I eat out I'm finding I'm getting cc, especially when I have corn tortilla's that evidently are prepared with flour foods. :( The majority of my lesions have healed to the purple stage with rough skin. I haven't posted my Mar pics but did post pics after a month on Dapsone. The lesions were still quite bad but with tolerable symptoms. Good luck with following the diet and as cleared as you are responding to being gluten-free, Dapsone would probably clear you very quickly. You will receive good advice from the members that have been on here for quite some time. . .


How long were you [or are you] on Dapsone? any side effects? I am leery of that drug.
best wishes.

moneek.

In Topic: Meds For Dh - Dapsone And Others

29 December 2012 - 07:27 PM

Looks a lot like mine me thinks ;) I was sucessful using clobetosol propionate to keep my itching low and the blisters controlled, but I was going through like 4-5 15mg tubes a month... on that high potency corticisteriod that's only supposed to be used 10 days at a time :/

Thanks for posting your pics it helps with my peace of mind... too bad it can't help with the gluten-withdrawl nauseous I have right now :(


can you do lactose products? yogurt and kefir are great for nausea and stomach discomfort, and, if not loaded with sugar, etc., have great pro-biotic effect. also, ginger tea.

and, yes, your rash looks a lot like mine.

.... moneek