For Irene

[Guest guest]

Hi Irene,

Yes - I was tested for tuberculosis, x-rays and DNA analysis of tissues from my leg. It came back normal without any evidence of TB. I also had chest x-rays and CT scans of my kidneys just to be sure that I did not have it elsewhere. It all came back negative for TB and the Infectious Disease doc just did not want to put me on the drugs just for the heck of it. Just like your husband, the two biopsy sites turned into ulcers and took almost 9 months to heal. Are they doing any wound care on your husband's leg? I had daily would care for 3 months - it was excruciating but helped in the healing. Also, my nurses told me not to wet my legs and I think that also helped with the healing. They cleaned my legs and feet whenever they did wound care but otherwise I used this plastic thingy when I took a shower to keep it dry. My derm doc said it's ok to wet it, but I saw a big difference

when I followed my nurses' advice. I know the pain can be excruciating -- he needs to stay off his feet as often as possible and elevate his feet. Cold compresses gave me some relief, although some people have stated that warm compresses help too. Even now I still have a lot of pain -- joint paints mostly and my tendon on the left leg is really bad. The site of the healed ulcers still pain me up to now and my legs look like I had 3rd degree burns on them. Not very pretty and scarred for life but I'm just thankful the ulcers are gone.

I truly understand how terrible this illness is -- during it's peak, I was so devastated and just felt so terrible and alone. It was a big relief when I found this support group because it made me realize that I was not alone and that others are in the same situation. At this time, your husband really needs your support, the support of your friends and family. I know that just having my friends around cheered me up even on days when I felt so low and sick. Just be there for him and this too will pass. BTW -- I am now on some meds for depression brought on by this illness. Your husband should see his doctor and talk to him about being put on some meds to help him cope. I waited too long -- tried to tough it out, but really I should have been on the meds so much earlier.

Please keep us updated on your husband's condition and I will keep him in my prayers.

Best,

Flo

To: "erythema_nodosum_Group " <erythema_nodosum_Group >Sent: Mon, July 12, 2010 12:01:26 AMSubject: Re: Re: Is it rash or skin ulcers

Thank you Rebacca, Jeff and flo you guys are very supporttive. Flo I was just reading about ei and they mentioned TB infection do you have any idea about that doc put my husband on TB med to try and he couldn't tolerated do you have any experience with that. He is in too much pain and sooo depressed I don't know what to do anymore also I want to ask you if you did have any low white blood cell counts thank you so much and may God bless you. We have an appt with derm tommorrow!!! !Sent from my iPhone

On Jul 11, 2010, at 7:41 PM, Florence Marino <florencemarino@ yahoo.com> wrote:

Hi Irene,

I was also diagnosed with panniculitis after the appearance of painful nodules. When the nodules started to go down, I developed a pin hole sized wound on top of the biggest nodule, which later on was diagnosed and came back as erythema induratum -- another type of panniculitis that ulcerates. After about 7 months, I had a total of 7-8 oozing ulcers on both legs -- very painful and always infected. I was put on several courses of Cipro, Levaquin, Keflex and other antibiotics with no improvement. I took Naprosyn for the edema but had minimal improvement. My derm eventually put me on course of SSKI, Naprosyn and daily wound care. The healing was very slow until he added Colchicine to the mix. The combination of Naprosyn and Colchicine really helped the edema and inflammation and that's when the ulcers started healing. My derm doctor said that healing is faster when the edema and inflammation is

under control. That seems to be what really helped me.

I empathize with your husband -- I suffered a lot with this illness and even now even though the woulds are healed, I still suffer from joint pains, tendenitis and pain on the site of the ulcers. The emotional and mental toll has also affected me to the point that I now take meds for depression and anxiety attacks. This illness has totally changed my lifestyle; however, I am just thankful that I am going on the road to recovery.

Best,

Flo

EN 1983

EI 2008-present

From: Ereeny <ereenykyahoo (DOT) com>To: "erythema_nodosum_ Group " <erythema_nodosum_ Group >Sent: Sun, July 11, 2010 1:07:29 AMSubject: Re: [erythema_nodosum_ Group] Re: Is it rash or skin ulcers

Thank you so much Jeff for replying to my message I forgot to mention that he has been sick for 7 months now with panniculitis according to a biopsy report but only 4 weeks ago when he started to feel better he was on perdnisone 20 mg and plaqunal 400 mg a day a rash like follicutis was on his leg derm took a sample and order culture which came back as bacerial and fungus infection they put him on cepro for 3 weeks and that made him worse to make the story short he has been in hospital twice in 4 weeks now he has leg sores with brown scabs on it and still looks like infected to me also his WBC is 1.2 I'm so sorry for long email but I don't know what to do and going to docs seems so depressing to me and him too he is 37 yrs old do you have any idea of what to ask the derm to check for we do have an appt Monday. Forgot to tell you biopsy site has been deep open and not heeling for 4 months now thank you so much Jeff and sorry for long email

Are you feeling better now and how is your ulcers?

Irene Sent from my iPhone

On Jul 10, 2010, at 12:02 AM, "JB" <the5berksyahoo (DOT) com> wrote:

Irene,What is suggesting is very important. And your point about sores from infections and skin ulcers and/or inflammation is an important one. One obvious distinction between EN and PG, PG will within about 10 days break open as an ulcer. It has absolutely nothing to do with an infection. Infection treatment is a first line defense while the doc continues to explorer other possibilites, such as EN or PG. Often times infection treatment and PG treatments are combined. PG ulcers can become infected, but PG "tends" to resist it. Likely because PG is such a much larger issue and the body is dealing with fighting inflammation as a result.Most docs are clueless about what PG is. It is extremely rare. About 1/2 of the time it is associated with other cronic disease such as Crohns Disease. A specialist such as a dermatologist well versed in PG is your best shot if this is suspected. The DX is to check for everything else (infections,

yeast, cancer, etc.) by doing a 3mm punch biopsy from that tissue and ordering BOTH slides and cultures. If nothing shows up, its about a 99% chance, if everything else agrees (such as visual and order), it is PG. It is a DX of exclusion. You DO NOT, under any circumstances let a doc deep debride or perform surgery on this site. Pathergy will result and it will spread like wildfire. You may have to verse yourself about PG before you start asking your doc. You likely will have to "educate" him or her. Just Goggle "pyoderma gangrenosum" and you will see a wealth of info and pics. Even my pick is in there! :(Post a pic of the area and as much explaination as possible and we can try to give you some clues as to how to proceed.Jeff,PG,CD,IMED>> Hi everyone first i'm very thankful for this group I feel how all of you are very supportive. Second i'm lost because of the docs again! My husband got rash on his legs right after the nodules diappeared the derm put him on antibiotics for three weeks he got worse and we ended up in hospital doc there said this not bacterial infection these skin sores from inflammation now I don't know and I'm so scared is anyone knows what the differnce between sores from skin infections and skin ulcers and any idea how to make him feel better he is in too much pain and depressed thank you all and plz pray for him as I do pray for everybody in this group God bless you all>

Irene>