Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 If you go to pubmed and put in " CVID " the most current article (2008 done at Walter ) concludes that infection and/or *autoimmune* disease are signs of CVID. They are looking at CD27. So, it's starting to make sense to me why so many of our children are vulnerable to joint pain. (There are many other reasons for joint pain...but, according to the authors, its part of the CVID package for some patients). Re: joint pain Hello Sally, I have a 3 yr old with a combine immune deficiency that also has what they are calling JRA (juvenile rheumatological arthritis). He gets IVIG (gamunex)every 3 weeks. In his case the IVIG helps his arthritis. He actually complains more prior to his IVIG infusion. Afterwards, no complains for awhile. Not sure if it is from the IVIG itself or the IV steroids he gets with it or the combination of the two. But, I remember his rheumatologist saying that some people with arthritis the IVIG may make it worse. Not sure if this helps or not. Feel free to email if you have more questions. Good luck! Proud Mom of 4: 3yr old : PID~combine immune deficiency and etc..... 8yr old Hannah: asthma, allergies, urinary reflux, T & A 6yr old Noah: asthma, ADD 5yr old : allergies, chronic sinusitis, one enlarge tonsil www.caringbridge. org/visit/ matthewfranson > > Hello, my son who is 10 years old has been on Gammunex for 5 years now > and with no side affects. But recently he has complained more that his > back, legs and ankles hurt after his treatments. He just got his > treatment today and about 2 hours after his treatment he started > yelling at the top of his lungs that his ankles were in extreme pain! > Do you think that this could be a side affect of the IVIG or that > something else could be going on? Does anyone else have a child that > has joint pain? > > Any help would be appreciated. > Thanks > Sally Mom to Wesley, 10 years old with CVID, Asthma, Allergies, GI > problems, > <!-- #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-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:upp\ ercase;} #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-ri\ ght:.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;} --> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Wow . I have not seen that article. Thank you so much for pasing it along as you know Charlie suffers from this and just last week Dr M. Said also has it in his knee and ankle. Dayna Sent via BlackBerry from T-Mobile Re: Re: joint pain If you go to pubmed and put in " CVID " the most current article (2008 done at Walter ) concludes that infection and/or *autoimmune* disease are signs of CVID. They are looking at CD27. So, it's starting to make sense to me why so many of our children are vulnerable to joint pain. (There are many other reasons for joint pain...but, according to the authors, its part of the CVID package for some patients). Re: joint pain Hello Sally, I have a 3 yr old with a combine immune deficiency that also has what they are calling JRA (juvenile rheumatological arthritis). He gets IVIG (gamunex)every 3 weeks. In his case the IVIG helps his arthritis. He actually complains more prior to his IVIG infusion. Afterwards, no complains for awhile. Not sure if it is from the IVIG itself or the IV steroids he gets with it or the combination of the two. But, I remember his rheumatologist saying that some people with arthritis the IVIG may make it worse. Not sure if this helps or not. Feel free to email if you have more questions. Good luck! Proud Mom of 4: 3yr old : PID~combine immune deficiency and etc..... 8yr old Hannah: asthma, allergies, urinary reflux, T & A 6yr old Noah: asthma, ADD 5yr old : allergies, chronic sinusitis, one enlarge tonsil www.caringbridge. org/visit/ matthewfranson > > Hello, my son who is 10 years old has been on Gammunex for 5 years now > and with no side affects. But recently he has complained more that his > back, legs and ankles hurt after his treatments. He just got his > treatment today and about 2 hours after his treatment he started > yelling at the top of his lungs that his ankles were in extreme pain! > Do you think that this could be a side affect of the IVIG or that > something else could be going on? Does anyone else have a child that > has joint pain? > > Any help would be appreciated. > Thanks > Sally Mom to Wesley, 10 years old with CVID, Asthma, Allergies, GI > problems, > <!-- #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-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:upp\ ercase;} #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-ri\ ght:.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;} --> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 I have all over joint pain. I have to take my want to be pain meds (tramadal..it works some, I take 3 at a time) at least 1 1/2 hours before I can even get out of bed in the morning. Wish I knew what is the best pain relief...someone has got to have ideas or some opinions PLEASE Newton in Nevada'Be kinder than necessary because everyone you meet is fighting some kind of battle. From: shelly <nurselamb@...>Subject: joint painHepatitis CSupportGroupForDummies Date: Tuesday, October 7, 2008, 1:16 PM Does anyone else get terrible joint pain? As of this summer both my knee joints are so unbelievably pain full I can barely walk. At night when I'm sleeping I sometimes can't turn over in bed, as well am totally soaked with sweat. The joint pain is always in my knee's and now is traveling around my body inflicting pain in all the joints. So I went to the Doc, my lab values have actually improved and my numbers are down. He gave me time release morpine for the pain, but sometimes is does nothing. I have lost a fair amount of wieght this summer, not that I didn't need to. What if aything is the best pain reliever Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2011 Report Share Posted July 21, 2011 I take cayenne fruit pills. You can by them at Walmart for 3 bucks. Read about Cayenne's virtues. http://www.cayennepepper.info/Condrotin did nothing for me.two days on the Cayenne and I woke up considerably better.Of course DYODD. Good luck and let me know how it works.Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2012 Report Share Posted April 3, 2012 Just a thought - do you eat a lot of wheat on your version of DASH? I have celiac disease which means I can't eat wheat; before my adrenalectomy when I looked into DASH it seemed near-impossible to me to do wheat-free. Even in non-celiacs, the gluten in wheat has been linked to inflammation, particularly in those with arthritis or RA. So, if DASH has by any chance caused you to eat more wheat (or other grains that contain gluten), you may try eliminating it for a while to see if that helps the pain. There is also a lot of anecdotal evidence among the celiac/gluten-intolerant community of depression, mood swings, and anxiety subsiding when gluten-containing foods were discontinued. Not sure if this pertains to the general population or not. -msmith1928 Successful left laparoscopic adrenalectomy 10/13/12 > >>>>> > >>>>>Â > >>>>>>I got a spot urine test yesterday, to see how well I've been Dashing, but now I've forgotten what the ratio of K to Na is supposed to be and I'm not sure what this 4 to 1 ratio means. Is it too low? Â Since I got the test after seeing my N! ephrologist I couldn't ask him during the appointment. > >>>>>> > >>>>>> > >>>>>>My results were K = 100.5 (12.0 - 129.0) > >>>>>>Â Â Â Â Â Â Â Â Â Â Â Â Na = 24 Â (no norm given) > >>>>>> > >>>>>> > >>>>>>The rest of my results were pretty much unchanged from last year, but they did do an Albumin/Creatinine ratio. It had started out at 300.1 (0.0 - 29.9) when I was first diagnosed with PA in July 2010 and before any treatment. Now it's at 5.1, which my Nephrologist says is very good. > >>>>>> > >>>>>>! > >>>>>>Dianne F-69, bi-lateral adenomas, undiagnosed PA for over 25 years, CKD, 75mg Spiro, 37.5mg Atenolol, Dashing. > >>>>>> > >>>>>> > >>>>>> > >>>>>> > >>>>>> > >>>>>> > >>>>>>Â > >>>>>> > >>>>>> > >>>>>> > >>>>>> > >>>>> > >>> > >= > Quote Link to comment Share on other sites More sharing options...
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