Re: Re: Welcome New Member Tina Web-/ Case History/PG member

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Hi Jeff, Thanks for your message. I will look at the archives as soon as I figure out how to get to them. I am rather dyslexic and reading is very slow for me. The first thing I did was click EN Triggers (since I am such a reactive type of person). The asthma medication which I have been taking for years is one of the triggers!! The Mayo Clinic is apparently looking at the relationship between EN and this class of asthma meds. Is there a way for me to get in touch with them so they can include me in their research on this? I'll be reading for days!! The reason I invested in a computer and internet access was so I could connect with a group like this. But I was so tied up with appointments, and my life derailed with such pain that I didn't get around to focusing in until this holiday break. Neurontin seems to be helping with the pain at last. Thanks for reaching out, TinaJeff

wrote: hi Tina,my name is jeff. i am the group's resource person for pg (although rebecca didn't mention it---shame on you rebecca!......j/k :)i read your case history and felt compelled to write and make a few suggestions. it appears you have been suffering a long time, probably needlessly. pg can be agressive and persistent as you are aware (see my pics in the photo section). wound care 2x week is good. not sure what your wound care clinic is doing, i could discuss that more if you would

like or you can read some of rebecca's archives on the subject i have written previously (that's my first suggestion). i understand you being apprehensive about going on systemic steriod treatments. many docs use that as first line defense, although i am of the opinion it should not be. there are other systemic as well as topical treatments that should be investigated in your case. again, read the archives, i have discussed those in some detail. the first order of business is to get a derm doc that is well versed in pg. in most cases, pg is associated with another underlying cause. both need to be addressed by the appropriate speciality doc.having surgery on the pg ulcers can, in most cases cause it to spread. this is called "pathergy" (i have discussions on this in the archives also). your other sores, you might have the doc consider shingles. i know these are virus related, but with your autoimmune system

being "off", this is a possibility.i hope my suggestions are enough to get you started on the way to improvement of you pg condition. write us here and let us know what you think.jeff,pg,cd> 5. Describe your erythema nodosum/PG symptoms or, if you do not have EN> or PG, please explain why you wish to join this group. PG lesions have> appeared on both legs off and on for almost four years. Severe pain,> even around some of the scars. My most recent outbreak has been multiple> lesions around one ankle. For a few months, I was in a wheelchair> because of the most extreme pain yet. At the worst point, I could only> scoot on the floor. I was unable to get much sleep because of the pain> and I could not shop or prepare food during this period. I attend a> wound care center twice a week. I spend most of every week going to> appointments and geting tests.

The bleeding and drainage can require> heavy wound dressings for weeks or months during some phases of the> outbreaks.> > > 6. List any other health conditions.> I am a Hodgkin's Lymphona survivor. I have been slightly anemic for a> year. CT and PET scans reveal enlarged lymph nodes which show up as> "reactive", but not cancer when biopsied. I have food sensitivities to> grains and bovine dairy. I have type O blood. I sometimes get sores at> the back of my neck which last for weeks. I have had repeated sores at> the front, top of my nostrils which don't show anything when cultured. I> had phneumonia last summer.> > > 7. State what medications or treatments you take for EN, and their> effectiveness:> I have been using homeopathic mercurialis and calendula, both orally and> topically, on the small "pimples" (not the large, open

lesions). I take> turmeric. I tried Omega 3 oil but can't tell whether or not that may> have worsened the condition. I get solumedrol on my special dressings at> the wound care clinic and I can't tell that there is much improvement> from it. Some of the lesions are healing while others are continuing to> spread. It is very difficult to discern whether or not something is> helpful because the condition will eventually heal by itself and it> always seems to last for months no matter what. Having and area cut out> will cause it to heal but I understand that this causes the condition to> spread. I have been resisting systemic steroid treatments because I am> afraid of the side effects, expecially given my Hodgkin's history.

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, At the bottom of your welcome message, I clicked on "visit New EN Website; I clicked on EN Triggers; I scrolled down to "2) Drugs"; I scanned the list and bingo, there was Montelukast. Right under that there is a link so I clicked "Mayo Foundation-Treatments With Leukotriene-Modifying Agents". Scroll down to teh heading "Discussion" and there are a few paragraphs with references to EN. I read in there somewhere that, as of now they have no proven cases of PG being related to Montelukast. I would very much like to help them with that proof if I could. I never want anyone else to suffer as severely as I have, and for so many clueless years, if this drug relationship can be established as a red flag for doctors to consider. It seems like a no-brainer for our group to be available for studies. The list of triggers is very long and with such a rare disorder, our group would be a gold mine for case study investigations and data

collection. We could all answer questionairs and they could have computer tabulation to sift through the data. I think it would be extremely valuable. And if they lumped that portion of us with autoimmune disorder into autoimmune disorder research, we could contribute a great deal to studies within that larger branch of medical research as well. I am extremely excited at the prospect of discovering a trigger after spending only a few minutes looking at your website. THANK YOU Tina Strecker wrote: Hi Tina,<<The Mayo Clinic is apparently looking at the relationship between ENand this class of asthma meds. Is there a way for me to get in touchwith them so they can include me in their research on this?>>Can you tell me how you found this out? If it was from a website, canyou send us the link? Our group has grown to over 1700 membersworldwide, so I would love for Mayo to know about us. With a groupthis large, I think we are a research study just waiting to happen,and Mayo may wish to avail themselves of us. We are collecting donations for EN Research, but if any EN research isgetting started, we should try to get in on it. One of the hardestparts of any research with rare disorders is to find subjects. We havelots of willing subjects here! We all want to find answers!My cousin Frances recently finished radiation for lymphoma and she'sfeeling well now. We are all hoping

she is a lymphoma survivor too.Hi Jeff, Glad you are here to keep me on my toes! I have an EN flare going onnow--and I even got the fever and malaise when it started...haven'thad that in a very long time. Feeling better today. No fever and nomalaise just the red leg. Been using men's Bauer and Black firmsupport knee socks. These stay up nicely and are well made. Hiddenunder a pair of white socks no no one can see I am wearing one blacksock. They are nice and snug. I prefer them to the TEDS. The new TEDSare thinner and less support than the the way they used to make them.Not much more support than regular support stockings. For a personwho insist on no advertising on our site, I sure do plug a lot ofproducts. But I don't get any "commission" :-)Wishing Everyone a Happy New Year!Love,idio. EN '68

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Hi , Do you want me to add cousin Frances to my prayer list? Blessings for healing. I understand that lymphoma has a 75% cure rate. I have been clear for almost twelve years, thankfully. I had a recent scare of recurrence just before Christmas because of bilateral adenopathy. But I read in the EN website that this is part of the EN, not the lymphoma. I'm really a computer dummie. How do I get to the yahoo group in order to sign in? Should I ask my questions there (once I figure out how to get in), or in the guest comments at the Website? I am hugely grateful for all the work you must be putting into all this. Bless you from the bottom of my heart. I feel like my whole world has been lifted in the last twenty four hours since I found your support group. Tina Strecker wrote: Hi Tina,<<The Mayo Clinic is apparently looking at the relationship between ENand this class of asthma meds. Is there a way for me to get in touchwith them so they can include me in their research on this?>>Can you tell me how you found this out? If it was from a website, canyou send us the link? Our group has grown to over 1700 membersworldwide, so I would love for Mayo to know about us. With a groupthis large, I think we are a research study just waiting to happen,and Mayo may wish to avail themselves of us. We are

collecting donations for EN Research, but if any EN research isgetting started, we should try to get in on it. One of the hardestparts of any research with rare disorders is to find subjects. We havelots of willing subjects here! We all want to find answers!My cousin Frances recently finished radiation for lymphoma and she'sfeeling well now. We are all hoping she is a lymphoma survivor too.Hi Jeff, Glad you are here to keep me on my toes! I have an EN flare going onnow--and I even got the fever and malaise when it started...haven'thad that in a very long time. Feeling better today. No fever and nomalaise just the red leg. Been using men's Bauer and Black firmsupport knee socks. These stay up nicely and are well made. Hiddenunder a pair of white socks no no one can see I am wearing one blacksock. They are nice and snug. I prefer them to the TEDS. The new TEDSare thinner and less support than the the way

they used to make them.Not much more support than regular support stockings. For a personwho insist on no advertising on our site, I sure do plug a lot ofproducts. But I don't get any "commission" :-)Wishing Everyone a Happy New Year!Love,idio. EN '68

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HI Tina,I'm so embarrassed! That link:http://www.mayoclinicproceedings.com/inside.asp?AID=1461 & UID=is on our EN Group website that , Ron and I worked on just months ago!I guess it is just impossible for me to keep everything in my head. When members tell us their medications I often check that list--which grows as we find more drugs that trigger EN. And if a drug isn't on the list I do some research to see if it should be. I do agree with

you that our EN Group is perfect for any EN researcher to mine. But we haven't been contacted by any researchers , or even many doctors. I think that many health support groups are more for hand-holding, and doctors don't expect to find as much interest in the medical aspects of our illnesses. That's part of why we created our EN Website--to attract the medical field who are so reluctant to join our group. Looks like the study was published in 2000 But certainly it would not hurt to contact the authors and tell them about ourselves. If I am reading this correctly, the researchers were from Boston. Would the person to contact be: F. Dellaripa, MD, Division of Rheumatology, Lahey Clinic, 41 Mall Rd, Burlington, MA 01805.?Love,idio. EN '68 You can help Erythema Nodosum Research. Just go to www.goodsearch.com and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!

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