Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Last time i had a CBC done, my white count was on the very low side of normal, and that was months before i started the prednisone. My immune system is pretty awful anyways, but i feel that the prednisone only makes matters much worse. I just finished my 10 days of antibiotics (doxycycline) from having bronchitis, and yet i'm still coughing. I also woke up yesterday to find a gland bulging out of my neck (still is), and this morning woke up to be mostly covered with a rash. started benadryl for the rash this morning, but unfortunately it made me pass out at work today! taking another dose of that before bed shortly and seeing if it helps anymore. I don't think it's any sort of allergic reaction, so it's very questionable as to what it is and why it just showed up now. it's on my cheeks, neck, inside of my arms (whole length), stomach, back, and shoulders. doesn't itch, very tiny red bumps, and i'm 99.9% positive it's not keratosis pilaris like my nurse friend suggested. as for EN being connected to physical activity, i'd love to figure that out. i am still very active (except in the middle of a bad flare up), going to the gym to run and lift weights 3-4 times a week. i haven't noticed any connection between when/how hard i work out and EN flare ups, but I would love to know if they are related. I really cannot stand not being able to exercise because my stupid ankle swells to 3 times the normal size. i hate EN and being a medical anomaly!! > > , your story sounds very familiar. My EN started in my shins after running. Mayo started me at 60 mgs. of Pred. I'm tapering and currently at 17 mgs. I have no nodules this week. I also take 400 mgs.hydroxichlorquine. You mentioned that your immune system was down. I was just curious if your white count is in the normal range. My is not and in fact has been very low. Good luck and good health...Lou > > New member > > Hi, > > I'm (UK member). Unfortunately I accidently deleted the > questionnaire I was asked to complete so I will try and detail my > experience as best as I can. > > I was diagnosed with EN 5 weeks ago. Mine started with the hot, red > painful lumps on both lower legs. I eventually ended up with 32 > nodules at it's worst (limited to lower legs except for one on my > arm). My GP diagnosed very quickly and started me on 40 mgs > Prednisilone. My main problem however has been the joint pain > experienced in both hip joints. My mobility has been pretty bad > (couldn't get up/down stairs, drive etc). After a failed attempt at > getting off the steroids I am now looking like i'm succeeding this > time. The nodules have begun to regress and the joint pain is getting > a little better each day - I have managed a gentle return to work > this week. > > The cause of my EN is questionnable. I am normally fit and well, I > had some jaw surgery in January which appears to have left my immune > system down as since then I seemed to catch every bug going inc > sinusitis and a throat infection. I am not on the contraceptive pill > but did have an attempt at IVF in February which meant I was on high > doses of oestrogen and progesterone - so my GP is unsure of a > specific cause (it could be all of the above)! > > I am very glad to have found this group as information has been > sketchy at best from my doctor. I will always respect the members of > this group. > > I guess what I'm looking for is expanding my knowledge of living with > EN (as I'm unsure of whether my apparent recuperation will last, > whether I will experience any new flares or if I will have to live > with this for an indeterminate period of time). I hope aswell to help > educate my GP a little more ;-) > > Thank you for listening, and thanks already for what I am learning > from here already! > > > > <!-- #ygrp-mkp{ border:1px solid #d8d8d8;font-family:Arial;margin:14px 0px;padding:0px 14px;} #ygrp-mkp hr{ border:1px solid #d8d8d8;} #ygrp-mkp #hd{ color:#628c2a;font-size:85%;font-weight:bold;line- height:122%;margin:10px 0px;} #ygrp-mkp #ads{ margin-bottom:10px;} #ygrp-mkp .ad{ padding:0 0;} #ygrp-mkp .ad a{ color:#0000ff;text- decoration:none;} --> <!-- #ygrp-sponsor #ygrp-lc{ font- family:Arial;} #ygrp-sponsor #ygrp-lc #hd{ margin:10px 0px;font- weight:bold;font-size:78%;line-height:122%;} #ygrp-sponsor #ygrp- lc .ad{ margin-bottom:10px;padding:0 0;} --> <!-- #ygrp-mlmsg {font-size:13px;font-family:arial, helvetica, clean, sans-serif;} #ygrp-mlmsg table {font-size:inherit;font:100%;} #ygrp-mlmsg select, input, textarea {font:99% arial, helvetica, clean, sans-serif;} #ygrp-mlmsg pre, code {font:115% monospace;} #ygrp-mlmsg * {line- height:1.22em;} #ygrp-text{ font-family:Georgia; } #ygrp-text p{ margin:0 0 1em 0;} > #ygrp-tpmsgs{ font-family:Arial; clear:both;} #ygrp-vitnav{ padding-top:10px;font-family:Verdana;font-size:77%;margin:0;} #ygrp- vitnav a{ padding:0 1px;} #ygrp-actbar{ clear:both;margin:25px 0;white-space:nowrap;color:#666;text-align:right;} #ygrp-actbar .left { float:left;white-space:nowrap;} .bld{font-weight:bold;} #ygrp-grft { font-family:Verdana;font-size:77%;padding:15px 0;} #ygrp-ft{ font- family:verdana;font-size:77%;border-top:1px solid #666; padding:5px 0; } #ygrp-mlmsg #logo{ padding-bottom:10px;} #ygrp-reco { margin- bottom:20px;padding:0px;} #ygrp-reco #reco-head { font- weight:bold;color:#ff7900;} #reco-grpname{ font-weight:bold;margin- top:10px;} #reco-category{ font-size:77%;} #reco-desc{ font- size:77%;} #ygrp-vital{ background-color:#e0ecee;margin- bottom:20px;padding:2px 0 8px 8px;} #ygrp-vital #vithd{ font- size:77%;font-family:Verdana;font-weight:bold;color:#333;text- transform:uppercase;} #ygrp-vital ul{ padding:0;margin:2px 0;} > #ygrp-vital ul li{ list-style-type:none;clear:both;border:1px solid #e0ecee; } #ygrp-vital ul li .ct{ font- weight:bold;color:#ff7900;float:right;width:2em;text- align:right;padding-right:.5em;} #ygrp-vital ul li .cat{ font- weight:bold;} #ygrp-vital a{ text-decoration:none;} #ygrp-vital a:hover{ text-decoration:underline;} #ygrp-sponsor #hd{ color:#999;font-size:77%;} #ygrp-sponsor #ov{ padding:6px 13px;background-color:#e0ecee;margin-bottom:20px;} #ygrp-sponsor #ov ul{ padding:0 0 0 8px;margin:0;} #ygrp-sponsor #ov li{ list-style- type:square;padding:6px 0;font-size:77%;} #ygrp-sponsor #ov li a{ text-decoration:none;font-size:130%;} #ygrp-sponsor #nc{ background- color:#eee;margin-bottom:20px;padding:0 8px;} #ygrp-sponsor .ad{ padding:8px 0;} #ygrp-sponsor .ad #hd1{ font-family:Arial;font- weight:bold;color:#628c2a;font-size:100%;line-height:122%;} #ygrp- sponsor .ad a{ text-decoration:none;} #ygrp-sponsor .ad a:hover{ text-decoration:underline;} > #ygrp-sponsor .ad p{ margin:0;} o{font-size:0;} .MsoNormal{ margin:0 0 0 0;} #ygrp-text tt{ font-size:120%;} blockquote{margin:0 0 0 4px;} .replbq{margin:4;} --> > > > > > > _____________________________________________________________________ _______________ > Be a better friend, newshound, and > know-it-all with Yahoo! 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Guest guest Posted March 27, 2008 Report Share Posted March 27, 2008 Last time i had a CBC done, my white count was on the very low side of normal, and that was months before i started the prednisone. My immune system is pretty awful anyways, but i feel that the prednisone only makes matters much worse. I just finished my 10 days of antibiotics (doxycycline) from having bronchitis, and yet i'm still coughing. I also woke up yesterday to find a gland bulging out of my neck (still is), and this morning woke up to be mostly covered with a rash. started benadryl for the rash this morning, but unfortunately it made me pass out at work today! taking another dose of that before bed shortly and seeing if it helps anymore. I don't think it's any sort of allergic reaction, so it's very questionable as to what it is and why it just showed up now. it's on my cheeks, neck, inside of my arms (whole length), stomach, back, and shoulders. doesn't itch, very tiny red bumps, and i'm 99.9% positive it's not keratosis pilaris like my nurse friend suggested. as for EN being connected to physical activity, i'd love to figure that out. i am still very active (except in the middle of a bad flare up), going to the gym to run and lift weights 3-4 times a week. i haven't noticed any connection between when/how hard i work out and EN flare ups, but I would love to know if they are related. I really cannot stand not being able to exercise because my stupid ankle swells to 3 times the normal size. i hate EN and being a medical anomaly!! > > , your story sounds very familiar. My EN started in my shins after running. Mayo started me at 60 mgs. of Pred. I'm tapering and currently at 17 mgs. I have no nodules this week. I also take 400 mgs.hydroxichlorquine. You mentioned that your immune system was down. I was just curious if your white count is in the normal range. My is not and in fact has been very low. Good luck and good health...Lou > > New member > > Hi, > > I'm (UK member). Unfortunately I accidently deleted the > questionnaire I was asked to complete so I will try and detail my > experience as best as I can. > > I was diagnosed with EN 5 weeks ago. Mine started with the hot, red > painful lumps on both lower legs. I eventually ended up with 32 > nodules at it's worst (limited to lower legs except for one on my > arm). My GP diagnosed very quickly and started me on 40 mgs > Prednisilone. My main problem however has been the joint pain > experienced in both hip joints. My mobility has been pretty bad > (couldn't get up/down stairs, drive etc). After a failed attempt at > getting off the steroids I am now looking like i'm succeeding this > time. The nodules have begun to regress and the joint pain is getting > a little better each day - I have managed a gentle return to work > this week. > > The cause of my EN is questionnable. I am normally fit and well, I > had some jaw surgery in January which appears to have left my immune > system down as since then I seemed to catch every bug going inc > sinusitis and a throat infection. I am not on the contraceptive pill > but did have an attempt at IVF in February which meant I was on high > doses of oestrogen and progesterone - so my GP is unsure of a > specific cause (it could be all of the above)! > > I am very glad to have found this group as information has been > sketchy at best from my doctor. I will always respect the members of > this group. > > I guess what I'm looking for is expanding my knowledge of living with > EN (as I'm unsure of whether my apparent recuperation will last, > whether I will experience any new flares or if I will have to live > with this for an indeterminate period of time). I hope aswell to help > educate my GP a little more ;-) > > Thank you for listening, and thanks already for what I am learning > from here already! > > > > <!-- #ygrp-mkp{ border:1px solid #d8d8d8;font-family:Arial;margin:14px 0px;padding:0px 14px;} #ygrp-mkp hr{ border:1px solid #d8d8d8;} #ygrp-mkp #hd{ color:#628c2a;font-size:85%;font-weight:bold;line- height:122%;margin:10px 0px;} #ygrp-mkp #ads{ margin-bottom:10px;} #ygrp-mkp .ad{ padding:0 0;} #ygrp-mkp .ad a{ color:#0000ff;text- decoration:none;} --> <!-- #ygrp-sponsor #ygrp-lc{ font- family:Arial;} #ygrp-sponsor #ygrp-lc #hd{ margin:10px 0px;font- weight:bold;font-size:78%;line-height:122%;} #ygrp-sponsor #ygrp- lc .ad{ margin-bottom:10px;padding:0 0;} --> <!-- #ygrp-mlmsg {font-size:13px;font-family:arial, helvetica, clean, sans-serif;} #ygrp-mlmsg table {font-size:inherit;font:100%;} #ygrp-mlmsg select, input, textarea {font:99% arial, helvetica, clean, sans-serif;} #ygrp-mlmsg pre, code {font:115% monospace;} #ygrp-mlmsg * {line- height:1.22em;} #ygrp-text{ font-family:Georgia; } #ygrp-text p{ margin:0 0 1em 0;} > #ygrp-tpmsgs{ font-family:Arial; clear:both;} #ygrp-vitnav{ padding-top:10px;font-family:Verdana;font-size:77%;margin:0;} #ygrp- vitnav a{ padding:0 1px;} #ygrp-actbar{ clear:both;margin:25px 0;white-space:nowrap;color:#666;text-align:right;} #ygrp-actbar .left { float:left;white-space:nowrap;} .bld{font-weight:bold;} #ygrp-grft { font-family:Verdana;font-size:77%;padding:15px 0;} #ygrp-ft{ font- family:verdana;font-size:77%;border-top:1px solid #666; padding:5px 0; } #ygrp-mlmsg #logo{ padding-bottom:10px;} #ygrp-reco { margin- bottom:20px;padding:0px;} #ygrp-reco #reco-head { font- weight:bold;color:#ff7900;} #reco-grpname{ font-weight:bold;margin- top:10px;} #reco-category{ font-size:77%;} #reco-desc{ font- size:77%;} #ygrp-vital{ background-color:#e0ecee;margin- bottom:20px;padding:2px 0 8px 8px;} #ygrp-vital #vithd{ font- size:77%;font-family:Verdana;font-weight:bold;color:#333;text- transform:uppercase;} #ygrp-vital ul{ padding:0;margin:2px 0;} > #ygrp-vital ul li{ list-style-type:none;clear:both;border:1px solid #e0ecee; } #ygrp-vital ul li .ct{ font- weight:bold;color:#ff7900;float:right;width:2em;text- align:right;padding-right:.5em;} #ygrp-vital ul li .cat{ font- weight:bold;} #ygrp-vital a{ text-decoration:none;} #ygrp-vital a:hover{ text-decoration:underline;} #ygrp-sponsor #hd{ color:#999;font-size:77%;} #ygrp-sponsor #ov{ padding:6px 13px;background-color:#e0ecee;margin-bottom:20px;} #ygrp-sponsor #ov ul{ padding:0 0 0 8px;margin:0;} #ygrp-sponsor #ov li{ list-style- type:square;padding:6px 0;font-size:77%;} #ygrp-sponsor #ov li a{ text-decoration:none;font-size:130%;} #ygrp-sponsor #nc{ background- color:#eee;margin-bottom:20px;padding:0 8px;} #ygrp-sponsor .ad{ padding:8px 0;} #ygrp-sponsor .ad #hd1{ font-family:Arial;font- weight:bold;color:#628c2a;font-size:100%;line-height:122%;} #ygrp- sponsor .ad a{ text-decoration:none;} #ygrp-sponsor .ad a:hover{ text-decoration:underline;} > #ygrp-sponsor .ad p{ margin:0;} o{font-size:0;} .MsoNormal{ margin:0 0 0 0;} #ygrp-text tt{ font-size:120%;} blockquote{margin:0 0 0 4px;} .replbq{margin:4;} --> > > > > > > _____________________________________________________________________ _______________ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Hi, my name is Cheryl. I have been diagnosed with EN for about the last 6 years. I am sure I experience many of the same symptoms as everyone here, very tender and numerous nodules on legs and arms, mouth pain, joint pain and swelling. I live in Southeast Indiana close to Cincinnati, OH. I joined the group because I know no one else with this diagnosis and to learn as much about EN as I came. I appreciate anyone willing to share their experiences, successes, failures and just everyday life with EN. I have no idea what causes mine and my doctor seems content not looking into what it could be. While I know doctors aren't very knowledgeable on EN, can anyone recommend what type of doctor I should see in light of my primary really doesn't seem interesting in doing anything other than prednisone. Thanks for allowing me to participate. Look forward to learning from you all. Quote Link to comment Share on other sites More sharing options...
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