Topic Options
#29142 - 02/26/14 04:59 PM I Need a Some Answers!
Jodi M Offline
New member

Registered: 02/24/14
Posts: 2
My name is Jodi. I'm a 46 yr. old female with LI. I've had it all my life. I was put on Accutane at the age of 11. It was a miracle! It didn't cure my LI, but controlled it. Several yrs. back, I've got these raw sores all over my body. They are very painful. None of the doctors & dermatologist can figure out the cause of it.ive tried many lotions such as a compound cream mixed with Propalyne & Glychol & also mixed with Lactic Acid. I put it on places that are not raw because it stings so bad. Then I follow it with Eucerin cream. The raw spots are under both breasts, on both sides of my hips, on my buttocks, & my groin area. I've been using a solution called Dakin Solution. It is mixed with water & bleach. I'm not able to get baths because I have a titanium rod in my left leg from a knee replacement gon bad. So my Mom takes gauze & soaks it in the Dakin Salution, and puts wet gauze on all the raw places that I have. But it is not working to well. About 6mo. Ago, my dermatologist took me off of the Accutane that I've been on since I was 11. But the sores are way worse than they have ever been. Hopefully when I go back to doc in March they will put me back on Accutane or another drug that did the same thing. What I was wondering is there any one out there that have suffered these raw spots. I can't be the only one that is having to go through this. I would like to talk with someone if I could. Thank you so much. Jodi Meador -- jbmeador12@gmail.com

Top
#29144 - 02/27/14 07:56 PM Re: I Need a Some Answers! [Re: Jodi M]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
I have never been on Accutane and I have EHK, but I have suffered from similar problems with raw spots in the same places that you seem to have them. I clean mine with Betadine and then use Bactracin or another petroleum-based antibacterial ointment. They are typically thicker, longer lasting and seem to promote healing, at least for me.
The hardest part, of course, is for the duration, I can't have my clothing touching those spots nor can I put any pressure on them until they are fully healed.
I would be worried that the Dakin's solution is quite harsh? I have the recipe for it but I have never used it so I am curious to hear what you think of it.

Top
#29151 - 03/01/14 02:18 PM Re: I Need a Some Answers! [Re: Jodi M]
Jodi M Offline
New member

Registered: 02/24/14
Posts: 2
Hi Glori,
Thank you for your reply. I've used Dakin's Solution. It sort of burns. But at one time I was using Acetic Acid, boy did that send me through the roof, that burned a lot more than Dakin's I don't think the Dakin has done all that well. You mentioned that when you use the Beytadine & Bactricin you can't put any pressure on the sores, that is a problem for my bottom, because I sit all the time, I'm afraid that sitting on it makes it worse. I might be able to work on some of the sores in the other areas. I'd like to try it. I'm hoping when I go back to dermatologist next week, he'll either put me back on Acctane or another drug that does the same thing. If you hear of any thing else that might be of help, please let me know. Thanks again. Jodi

Top
#30697 - 11/27/18 11:58 AM Re: I Need a Some Answers! [Re: Jodi M]
Cam Offline
New member

Registered: 11/27/18
Posts: 3
My dermatologist gave me a prescription that has 2% hydrocortizone, 5% glycerin, 5% urea in a LacHydrin base (12% ammonium lactate). The hydrocortizone helps to heal the sore spots for me.

Top

Moderator:  Laura Phillips 

Copyright 2012 Ichthyosis Information