Share this:
carolyoung

i also have this disease pyoderma gangrenosum and i know it is

Posted by @carolyoung in Just Want to Talk, Aug 11, 2011

i also have this disease pyoderma gangrenosum and i know it is so painful. i have had it for about 3 years now and it doesn't seem many drs know much about it i have been on pretazone for 2 months now.i still have sores (blisters) on my legs it feels like someone is holding a car muffler to you and you can't get it off. i would also like to know more about this disease if any one can help @nana0f1

nana0f1

Posted by @nana0f1, Aug 11, 2011

Hi Carol, My granddaughter says that hers feels like it is burning from the bones outward. She is exhausted a lot trying to cope with it. From what little that I have been able to find out about this disease it is a genetic thing. Incurable. But manageable if you can find a Dr. who will work with you. It seems that we all have a gene that tells the bone marrow to produce white blood cells that rush to the site of an injury to combat certain types of infections. When the fight is done the bone marrow stops producing the white blood cells. Only in the case of this disease something has gone wrong and the process does not stop. The white blood cells (antibodies) having killed all the infectious things, having nothing left to fight, start attacking the body itself. Therefore the damaged tissue. (in your case blisters, in my granddaughters abscesses). I used to take her to the hospital because these were so bad but they would surgically open them up and drain them and that only made them worse. Now I just help her by inserting a large bore needle into the abscess and drain it then squirt saline in the empty hole to clean it out and put antibiotics in it. it is nasty but it prevents larger scarring and faster healing. It has to be done very carefully though using extreme safety precautions. it is not contagious but the resulting infections(pus) can be if you have an open wound yourself I also found out that skin grafts to cover the worst ones was a bad idea because the disease itself would cause a rejection of the skin graft and then you would have an even bigger mess. It usually affects people 40 and over but can affect people of all ages and surprisingly dogs. It is usually on the upper arms and legs but can, in a worst case scenario, affect other parts of the body including your internal organs. It is also related to intestinal disorders such as PAPA, Crones, and liver problems. Best treated with Predinsone (steroids), Thalidomide, and drugs of that nature. The trouble is there are so few Dr.'s that know anything about this disease that they are reluctant to prescribe them because of dosage issues. Hope my little bit of information helps.

carolyoung

Posted by @carolyoung, Aug 13, 2011

l also take pretazone 60 mg a day. fur my dr says i cant take this for the rest of my life. i see a specialist the 30th of this month to see what he can do to help me. i will be sure to let you know what they do. i hope ypur grand daughter doesnt suffer too much i know it is so pain ful i find that taking a bath i n aveno oatmeal bath does help for a while to sooth the burning. when i have it before i found this cream called black salve i got it at rite aide but cant find it any where aroun where i live it healed the sores better than anything i ever used it is a drawing cream and it worked wonders for me you might want to look for some at you drug stores or se itf they can order it for you i truely know what she is going through please give her a hug and tell her im praying for her. i know there are times she just wants to give up but we have to be strong and fight this until they find someone to elp us hang in there hunny love and hugs to all of you!!!!!

carolyoung

Posted by @carolyoung, Aug 13, 2011

i also take pain med that help the burning percet 10mg and hydromorphone 4 mg it really helps me it i sa nartotic but if it hi=elps i will take it im so tired of sufferinf frim this as wellas your grandaughter my heart goes ot to her.

nana0f1

Posted by @nana0f1, Aug 14, 2011

Hi Carol: Watching her diet and keeping her internal organs functioning properly helps but not much. Right now she is going through a really rough patch. I don't have a facebook account yet but i am working up to it. I never owned a computer until about 3 months ago. No, i am not anti technology but for 20+ years my daily job was to input data into the computer system at work so I never considered having one at home to play on. my great granddaughter is getting me updated on all the many uses for a computer. my email address is hickeymarti@yahoo.com. I live in the State of Washington about 40 miles north of Seattle. And i have never met anyone except on this comments board with it. Marti

Please login or become a member to post a comment.