Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Dear Kim and Group, ******* I hear y'all talking about pg. Can you explain- is that a side effect type thing of EN or a separate problem that is just related but you may never get even if you have en? I just can't determine from the posts how you get that. Sounds awful! ******* As everyone knows I am not a dr. or even in the medical field, but let me explain what I understand about the EN/PG connection. Some of us have had EN and later developed PG. The vast majority of us that have had this experience have also had Crohn's disease. PG is a marker that Crohn's is active. Not everyone with Crohn's gets PG. It is pretty rare. Once the Crohn's is under control, the PG SHOULD improve. That is the theory anyway. Now at least one of our members has idiopathic PG. She doesn't have Crohn's. So although it is not a common occurrance, PG is something we who have EN either due to Crohn's or the idiopathic type need to watch for. Yes, PG is awful. But it IS treatable, and hopefully no one needs to lose limbs with proper medical care. Jeff and Patti both have lots of PG experience, and they both have Crohn's. There aren't any PG Groups that I have found, and it just makes sense for all of us to stick together and learn from each other. In many ways the PGers are our teachers. And most of them have had EN besides PG so they know what we are talking about. I am hoping that M's EN is not turning in to PG. But if it is, she is catching it at the earliest stage :-) If any of this isn't right, just set me straight, PGers. ok? Love, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Well, , I guess I don't have PG, although I'm still leary about it. Talked to my uconn derm doc today. I explained what was happening (white in the center, then green with shiny, wrinkly skin over it.) She said it sounded like they are HEALING! Don't you love when they make a decision without even looking??? She talked about the bruising, etc. Been there, done that . . . but I never made it to the grosser (is that a word?) part of the bruising; the greens and yellows . . . never got past purple. So in that respect, maybe they are healing?? The redness surrounding them is diminishing and they're not as sore. The green area is indented . . . really weird. Maybe this dapsone is working?? I went for bloodwork today to make sure the dapsone isn't wiping out my red blood cells. I suppose the doc will call if there's a problem. It's still all too confusing! My friend, who is a nurse, looked at them last night and thought they looked like blisters . . . so I guess I better just keep a close eye on them and call the doc, as instructed, if anything else weird happens. Wow! It's been crazy here in the group with all the new information flying around . . . it's all for the good! Thank you all so much! M =) > Dear Kim and Group, > ******* > I hear y'all talking about pg. Can you explain- is > that a side effect type thing of EN or a separate > problem that is just related but you may never get > even if you have en? I just can't determine from the > posts how you get that. Sounds awful! > ******* > As everyone knows I am not a dr. or even in the > medical field, but let me explain what I understand > about the EN/PG connection. > > Some of us have had EN and later developed PG. The > vast majority of us that have had this experience have > also had Crohn's disease. PG is a marker that Crohn's > is active. Not everyone with Crohn's gets PG. It is > pretty rare. Once the Crohn's is under control, the PG > SHOULD improve. That is the theory anyway. > > Now at least one of our members has idiopathic PG. She > doesn't have Crohn's. So although it is not a common > occurrance, PG is something we who have EN either due > to Crohn's or the idiopathic type need to watch for. > > Yes, PG is awful. But it IS treatable, and hopefully > no one needs to lose limbs with proper medical care. > > Jeff and Patti both have lots of PG experience, and > they both have Crohn's. There aren't any PG Groups > that I have found, and it just makes sense for all of > us to stick together and learn from each other. In > many ways the PGers are our teachers. And most of them > have had EN besides PG so they know what we are > talking about. > > I am hoping that M's EN is not turning in to PG. But > if it is, she is catching it at the earliest stage :-) > > If any of this isn't right, just set me straight, > PGers. ok? > > Love, > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 You described it well . Actually, the person with Ulcerative Colitis is most likely to get p.g., which is another form of ibd. This person is likely female and is likely middle age. Crohns next, then you have ideopathic cases. Only about 1% of Crohns people get p.g. Yes it is pretty rare. All these things are autoimune related. Basically inflammation areas in your body, for not really clear to us reasons. You can have all, some, most or any combination. It is difficult to dx, but it can be done if you are in the proper care. Docs tend to jump on the " infection " train anytime a sore breaks skin. You gotta watch'em! You don't just " get it " , usually, but not always, there is an underlying cause. Some think it is caused by a spider bite. I have never seen a spider bite in my whole life. Sometimes I wonder if spiders can even bite! I am sure some do, but you would expect a spider bite to subside within a reasonable peroid of time. pg, like en, does not " normally " settle down over nite. I hear of only a few rare cases of en people then getting pg. This can certainly occur, but there seems to be another whole set of additional precursers to getting en as compared to pg. Is saw my gi doc yesterday. she is still amased, out of all her cases, how I suffer so badly, like no one else she has, from extraintestinals. Most of her cases are bad Crohns cases with few extraintestinals. What a way to be " rare " eh? I would rather be a " rare catch " ...lol. jeff > Dear Kim and Group, > ******* > I hear y'all talking about pg. Can you explain- is > that a side effect type thing of EN or a separate > problem that is just related but you may never get > even if you have en? I just can't determine from the > posts how you get that. Sounds awful! > ******* > As everyone knows I am not a dr. or even in the > medical field, but let me explain what I understand > about the EN/PG connection. > > Some of us have had EN and later developed PG. The > vast majority of us that have had this experience have > also had Crohn's disease. PG is a marker that Crohn's > is active. Not everyone with Crohn's gets PG. It is > pretty rare. Once the Crohn's is under control, the PG > SHOULD improve. That is the theory anyway. > > Now at least one of our members has idiopathic PG. She > doesn't have Crohn's. So although it is not a common > occurrance, PG is something we who have EN either due > to Crohn's or the idiopathic type need to watch for. > > Yes, PG is awful. But it IS treatable, and hopefully > no one needs to lose limbs with proper medical care. > > Jeff and Patti both have lots of PG experience, and > they both have Crohn's. There aren't any PG Groups > that I have found, and it just makes sense for all of > us to stick together and learn from each other. In > many ways the PGers are our teachers. And most of them > have had EN besides PG so they know what we are > talking about. > > I am hoping that M's EN is not turning in to PG. But > if it is, she is catching it at the earliest stage :-) > > If any of this isn't right, just set me straight, > PGers. ok? > > Love, > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 You have a right to be leary! I just don't trust docs that much. I have met more docs that have made mistakes than docs that didn't. So what DID he say it was, or didn't he? You can't make a dx like that.......especially for p.g...........s~o~r~r~y! Wrong answer. You ever have a biopsy? The only way to know is to have the cell structure analized by a competent lab. Dapstone will work for p.g. in some cases, but so will many other things. jeff > > Dear Kim and Group, > > ******* > > I hear y'all talking about pg. Can you explain- is > > that a side effect type thing of EN or a separate > > problem that is just related but you may never get > > even if you have en? I just can't determine from the > > posts how you get that. Sounds awful! > > ******* > > As everyone knows I am not a dr. or even in the > > medical field, but let me explain what I understand > > about the EN/PG connection. > > > > Some of us have had EN and later developed PG. The > > vast majority of us that have had this experience have > > also had Crohn's disease. PG is a marker that Crohn's > > is active. Not everyone with Crohn's gets PG. It is > > pretty rare. Once the Crohn's is under control, the PG > > SHOULD improve. That is the theory anyway. > > > > Now at least one of our members has idiopathic PG. She > > doesn't have Crohn's. So although it is not a common > > occurrance, PG is something we who have EN either due > > to Crohn's or the idiopathic type need to watch for. > > > > Yes, PG is awful. But it IS treatable, and hopefully > > no one needs to lose limbs with proper medical care. > > > > Jeff and Patti both have lots of PG experience, and > > they both have Crohn's. There aren't any PG Groups > > that I have found, and it just makes sense for all of > > us to stick together and learn from each other. In > > many ways the PGers are our teachers. And most of them > > have had EN besides PG so they know what we are > > talking about. > > > > I am hoping that M's EN is not turning in to PG. But > > if it is, she is catching it at the earliest stage :-) > > > > If any of this isn't right, just set me straight, > > PGers. ok? > > > > Love, > > > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 I agree with you on trusting docs . . . and some of them get so insulted when you show up with information or your own diagnosis =) I did have a biopsy when I saw my first derm doc . . . in Jan/Feb. It came back as a positive EN. My new derm doc said it sounded to her that the green color is my lumps healing! The bruising that goes on when they heal. Like I said before, I never got past the purple stage of healing. Today the red around the green is lighter and less angry looking. The green has faded some and the skin is no longer shiny and wrinkly . . . so the doc might have gotten lucky on this one . . . me too!! I think the dapsone might be the med for me! I don't think it's affecting my red blood cells yet . . . I still feel pretty normal . . . whatever normal is! Enjoy the rest of your weekend! M > > > Dear Kim and Group, > > > ******* > > > I hear y'all talking about pg. Can you explain- is > > > that a side effect type thing of EN or a separate > > > problem that is just related but you may never get > > > even if you have en? I just can't determine from the > > > posts how you get that. Sounds awful! > > > ******* > > > As everyone knows I am not a dr. or even in the > > > medical field, but let me explain what I understand > > > about the EN/PG connection. > > > > > > Some of us have had EN and later developed PG. The > > > vast majority of us that have had this experience have > > > also had Crohn's disease. PG is a marker that Crohn's > > > is active. Not everyone with Crohn's gets PG. It is > > > pretty rare. Once the Crohn's is under control, the PG > > > SHOULD improve. That is the theory anyway. > > > > > > Now at least one of our members has idiopathic PG. She > > > doesn't have Crohn's. So although it is not a common > > > occurrance, PG is something we who have EN either due > > > to Crohn's or the idiopathic type need to watch for. > > > > > > Yes, PG is awful. But it IS treatable, and hopefully > > > no one needs to lose limbs with proper medical care. > > > > > > Jeff and Patti both have lots of PG experience, and > > > they both have Crohn's. There aren't any PG Groups > > > that I have found, and it just makes sense for all of > > > us to stick together and learn from each other. In > > > many ways the PGers are our teachers. And most of them > > > have had EN besides PG so they know what we are > > > talking about. > > > > > > I am hoping that M's EN is not turning in to PG. But > > > if it is, she is catching it at the earliest stage :-) > > > > > > If any of this isn't right, just set me straight, > > > PGers. ok? > > > > > > Love, > > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
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