Re: Re: Shout out to our PG Members

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Luke,just curious. Have you ever tried a gluten free diet?my grandmother had PG, my father EN and he had gluten intolerance. I got EN when I was 14'ish. Whenever I commit to the gluten free diet. I am lump free. When my father did gluten free he was free of lumps, too. I am wondering since his mother (my grandmother) had PG if you would try the gluten free diet and see what happens.ml ML GemmillEN 1975 Hi all.You are right of course, its been a while since theres been a PG post. I suppose maybe we sometimes feel that we are repeating the same things over and over again and theres only so many times you can talk about amounts of pain and feelings of depression without it sometimes overwhelming us. I was thinking for a while about what to post, it does sometimes seem that negativity is foremost in our minds, BUT surely there are some positive things which have happened as well? Yes, things can sometimes seem bad, but anyone who has read my posting will know that my outlook tends to be about facing up to things and making the best of a bad situation, so, with that in mind, here are a few GOOD things about my PG experience.1. Lost my job, not usually listed as a good thing but when I think about it, I no longer have to work for a boss who was a 100% A**HOLE!!2. With the sunny weather we have been having, Ive noticed that opiate painkillers shrink my pupils and so I dont suffer from the bright lights like I used to.3. I get free car tax!!!4. Dont have to pay for hospital parking any more.5. Ive finally managed to get round to reading a few books that I never had time for before.6. Ive found that although PG made me feel alone, I am not alone and wether I want to moan or cheer, there is someone out there to listen to me and who understand what im going through.so, a shout out to all those PG members out there, we dont like to make a fuss, but each of you has proved you are strong, you are actively seeking out information and working together to improve the treatments and to make things better for us all. Of course a big shout out to all the EN members who put up with our complaints and questions. We are all here to help each other, so come on everyone, keep up the good work and no matter wether its EN or PG, find a reason, ANY reason to have a smile.Luke>> Hi Everyone,> I can't remember the last time one of our PG members posted. How is everyone? > Love,> > http://poems2order.wordpress.com/> > > > > Please enter > Erythema Nodosum.........Thanks!>

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Hi Luke,What you said about inflammation and autoimmunity interested me. I looked up EN and found this article:http://en.wikipedia.org/wiki/Erythema_nodosumIt states: <<There is an association with the HLA-B27 histocompatibility antigen, which is present in

65% of patients with erythma nodosum.[15] >>Further investigationhttp://adam.about.net/encyclopedia/HLA-B27-antigen.htmSo according to this article, autoimmune issues are present in about

65% of those with EN. That would leave 35% with non immunity triggers, right? PG is not always autoimmune related. Sometimes it is idiopathic, And there are at least two types of PG--maybe more. It is so complex! I agree with you--try whatever has helped others and hope for the best. So far of our PG members only one person said they used non prescription treatment to cure themselves. He used colloidal silver if I remember correctly and he swore it worked. I have forgotten his name. I do not recommend trying his treatment. Love,http://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks!Subject: Re: Shout out to our PG MembersTo: erythema_nodosum_Group Date: Saturday, May 28, 2011, 12:51 AMHi MLI have indeed tried a gluten free diet, but if anything, it seemed to make things a bit worse but there was certainly no improvement and I tried it for about 4 months. The lack of assistance could well be down to the simple fact that PG is an Auto Immune condition whereas, as far as I understand it, EN is an inflamatory condition and not necessarily connected to the immune system. It was also pointed out to me that if a person has a compromised

imune system and sometimes the immune system attacks by producing TH1 (lymphocotes) cells which in turn have been found to produce an excessive pro inflamatory situation whih can lead to further skin irritation and tissue damage. I suspect this is an important difference between EN and PG in that the pro inflamatory response in EN is beneficial whereas in PG, anything that causes inflamation of an ulcerated are or further tissue damage, well lets just say = more OUCH factor!!I would never be the sort of person to try and put people off from trying any therapy that they consider may be helpful, after having my shin almost completely covered in ulcers which have, from time to time, migrated to other areas of my body, I really do understand that sometimes even a 'shot in the dark' is worth a go, but with something like this, given that everyones cases vary in different ways, it may be a good idea to consult a specialist dietician or even just your

GP before you start a different diet. Im not trying to say 'dont do it' its just that there are different degrees of both EN and PG and the more that the PG spreads, the more damaged tissue there is for the immune system to attack. If any PG member has had a positive reaction to a gluten free diet whilst no medication changes were made, it would be well worth discussing your results.In the meantime, to bring up an old subject, what painkillers have PG sufferers found to be helpful. To make it a meaningful question, the defauly PG picture on wiki and on our images section, is Jeff's leg, so saying Jeff's leg is 'everage ' and there fore a 5 on the scale ( from 1-10) Where does your PG rate in size and depth and what painkillers have worked for you?Luke> > > Hi all.> > You are right of course, its been a while since theres been a PG post.> > I suppose maybe we sometimes feel that we are repeating the same > > things over and over again and theres only so many

times you can > > talk about amounts of pain and feelings of depression without it > > sometimes overwhelming us.> > I was thinking for a while about what to post, it does sometimes > > seem that negativity is foremost in our minds, BUT surely there are > > some positive things which have happened as well? Yes, things can > > sometimes seem bad, but anyone who has read my posting will know > > that my outlook tends to be about facing up to things and making the > > best of a bad situation, so, with that in mind, here are a few GOOD > > things about my PG experience.> > 1. Lost my job, not usually listed as a good thing but when I think > > about it, I no longer have to work for a boss who was a 100% A**HOLE!!> > 2. With the sunny weather we have been having, Ive noticed that

> > opiate painkillers shrink my pupils and so I dont suffer from the > > bright lights like I used to.> > 3. I get free car tax!!!> > 4. Dont have to pay for hospital parking any more.> > 5. Ive finally managed to get round to reading a few books that I > > never had time for before.> > 6. Ive found that although PG made me feel alone, I am not alone and > > wether I want to moan or cheer, there is someone out there to listen > > to me and who understand what im going through.> >> > so, a shout out to all those PG members out there, we dont like to > > make a fuss, but each of you has proved you are strong, you are > > actively seeking out information and working together to improve the > > treatments and to make things better for us all. Of course a big > >

shout out to all the EN members who put up with our complaints and > > questions. We are all here to help each other, so come on everyone, > > keep up the good work and no matter wether its EN or PG, find a > > reason, ANY reason to have a smile.> >> > Luke------------------------------------You can help Erythema Nodosum Research. Just go to http://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. NOW you can also GoodShop for Erythema Nodosum. All your favorites including Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop for. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema

Nodosum!

[Guest guest]

Thanks for the clarification Luke. I did not know there was a PG Facebook group. I just requested to join, although I will most likely read and learn more than post. I always feel we were not giving enough support to our PG members--that they are simply overwhelmed by the sheer numbers of EN members--so it's great that there is a PG Facebook page where the conversation is always about PG. I will add the link to our ResourcesLove,http://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks!Subject: Re: Shout out to our PG MembersTo: erythema_nodosum_Group Date: Sunday, May 29, 2011, 6:26 PMHi Your comment is well taken, it should probably be cleared up about definitions, PG, as I understand it and have studied is an 'autoimmune condition' that is, whatever the trigger, it is the immune system which causes the symptoms that are related to PG. Idiopathic in your comment refers to the fact that there is no underlying condition or 'reason' for the person to have PG, this includes me, although I have had many tests for potential

conditions, none has been found. Therefore my PG is both idiopathic and autoimmune. Your comment seems to imply that the 65% of PG sufferers who are not idiopathic, could have an additional autoimmune condition which triggered the PG.I know the distinction isnt clear and it may seem a little confusing to realise that the condition itself can be both a trigger and the same thing that makes it get worse.Coloidal Silver has been tried and tested as an effective antibacterial agent, many PG sufferers, due to the nature of their ulcers ( see my pics ) can have many repeating incetions and hence the ulcers cannot heal even when receiving the correct treatment for the PG. Silver dressings therefore may help to control infections and in that way could aid the healing process. It is however important to differentiate between cause and effect. The PG gives the infection somewhere to live and also makes it worse, so do you treat the cause or the

effect? Short term the infections must be treated, long term the PG must be treated. Personally, my ulcers havent changed substantialy in about 3 years, they heal a little, then get worse again, over and over.On another note, on the PG group on facebook, someone has recently stated that they were refused DLA ( disabled living allowance ) for assistance with their PG, I myself receive DLA at Higher rate of Mobility component and lower rate of care component. Do other UK sufferers realise that they are eligible to claim? Ive assisted a few people with their benefits claims in the past and if anyone would like to ask questions, please feel free to do so. There are often things out there that can make your life easier but we dont know that we can claim or sometimes dont know how to claim or sometimes are too proud to claim.For anyone on facebook, the link is http://www.facebook.com/home.php?sk=group_56007379235 and there are people on their who are already members of this yahoo group too. There is no NEED to join both, but it cant hurt to share information as widely as possible.Luke> > > > > Hi all.> > > You are right of course, its been a while since theres been a PG post.> > > I suppose maybe we sometimes feel that we are repeating the same > > > things over and over again and theres only so many times you can > > > talk about amounts of pain and feelings of depression without it > > > sometimes overwhelming us.> > > I was thinking for a while about what to post, it does sometimes > > > seem that negativity is foremost in our minds, BUT surely there are > > > some positive things which have happened as well? Yes, things can > > > sometimes seem bad, but anyone who has read my posting will know > > > that my outlook tends to be about facing up to things and making the > > > best of a bad situation, so, with that

in mind, here are a few GOOD > > > things about my PG experience.> > > 1. Lost my job, not usually listed as a good thing but when I think > > > about it, I no longer have to work for a boss who was a 100% A**HOLE!!> > > 2. With the sunny weather we have been having, Ive noticed that > > > opiate painkillers shrink my pupils and so I dont suffer from the > > > bright lights like I used to.> > > 3. I get free car tax!!!> > > 4. Dont have to pay for hospital parking any more.> > > 5. Ive finally managed to get round to reading a few books that I > > > never had time for before.> > > 6. Ive found that although PG made me feel alone, I am not alone and > > > wether I want to moan or cheer, there is someone out there to listen > > > to me and who

understand what im going through.> > >> > > so, a shout out to all those PG members out there, we dont like to > > > make a fuss, but each of you has proved you are strong, you are > > > actively seeking out information and working together to improve the > > > treatments and to make things better for us all. Of course a big > > > shout out to all the EN members who put up with our complaints and > > > questions. We are all here to help each other, so come on everyone, > > > keep up the good work and no matter wether its EN or PG, find a > > > reason, ANY reason to have a smile.> > >> > > Luke> > > > ------------------------------------> > You can help Erythema Nodosum Research. Just go to > http://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. > NOW you can also GoodShop for Erythema Nodosum. All your favorites including Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop for. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!> > >