Guest guest Posted February 19, 2004 Report Share Posted February 19, 2004 Well, Rob had to have his PFT (pulmonary function testing ) repeated as it has been one year since the last, so he did that on Monday. The allergist/immunologist doctor called today and his diffusion capacity has decreased from 65% to 56%. He consulted Rob's pulmonologist and they want to do a CT of Rob's chest. He just had one done about a year and a half ago, so at least there will be something to compare to. I was really upset, because the allergist wanted me to call Dr. Passo, because he is concerned that perhaps the MTX might be the culprit, since Rob was begun on MTX last June, and the diffusion capacity has decreased since then. I called Passo's office today, but they were already closed, so I left a voice mail and also emailed Dr. Passo asking him to call the allergist and discuss it. I am not only concerned about his lung function, but also worried that if the MTX is the culprit and he has to go off it, what are we going to do. He cannot take any of the anti-TNF drugs yet because of the TB exposure, and although Rob is not in remission yet, the MTX has brought him some improvement. I guess I'll have to sleep on it. I'll update tomorrow after I hear from Dr Passo. and Rob 14 Spondy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Maira, Im so sorry Rob is dealing with all this. I hope you get some answers soon and get get his medications worked out. Sounds like the sooner he can start enbrel the better. Thinking of you both... hugs Helen, mom to (6,systemic) Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6) DD (4)>From: snooksmama@... >Reply- >rustyroom , >Subject: If its not one thing.... >Date: Thu, 19 Feb 2004 20:52:48 -0500 > >Well, Rob had to have his PFT (pulmonary function testing ) repeated as >it has been one year since the last, so he did that on Monday. The >allergist/immunologist doctor called today and his diffusion capacity has >decreased from 65% to 56%. He consulted Rob's pulmonologist and they want >to do a CT of Rob's chest. He just had one done about a year and a half >ago, so at least there will be something to compare to. I was really >upset, because the allergist wanted me to call Dr. Passo, because he is >concerned that perhaps the MTX might be the culprit, since Rob was begun >on MTX last June, and the diffusion capacity has decreased since then. I >called Passo's office today, but they were already closed, so I left a >voice mail and also emailed Dr. Passo asking him to call the allergist >and discuss it. >I am not only concerned about his lung function, but also worried that if >the MTX is the culprit and he has to go off it, what are we going to do. >He cannot take any of the anti-TNF drugs yet because of the TB exposure, >and although Rob is not in remission yet, the MTX has brought him some >improvement. >I guess I'll have to sleep on it. I'll update tomorrow after I hear from >Dr Passo. > and Rob 14 Spondy Get fast, reliable access with MSN 9 Dial-up. Click here for Special Offer! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 .. I remembered about the TB exposure... does this mena he can never start on enbrel, or does it mean he has to wait till the 9 mths are up and then hes clear to start enbrel??? Hugs Helen, mom to (6,systemic) Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6) DD (4)>From: snooksmama@... >Reply- > >Subject: Re: If its not one thing.... >Date: Fri, 20 Feb 2004 14:30:03 -0500 > >Helen: >Rob can't start Enbrel. He was somehow exposed to TB and had a positive >TB test and this prevented him from beginning Enbrel. So that is not an >option. >I heard about Nick's day. I hope he was able to stay at school and not >feel too terrible. It seems like when the weather is changing (as it is >here, 50 degrees after being in the 20's and 30's) our kids seem to feel >worse. >Thanks for your thoughts. > and Rob 14 Spondy > >On Fri, 20 Feb 2004 13:01:33 -0600 "Helen Burger" >writes: >Maira, >Im so sorry Rob is dealing with all this. I hope you get some answers >soon and get get his medications worked out. Sounds like the sooner he >can start enbrel the better. >Thinking of you both... >hugs Helen, mom to (6,systemic) > > > > > > > > >Hugs..Helen >DH Dan >DS's (20)(14)(12)Zachary(9)(6) >DD (4) > >From: snooksmama@... >Reply- >>rustyroom , >Subject: If its >not one thing.... >Date: Thu, 19 Feb 2004 20:52:48 -0500 > >Well, Rob had >to have his PFT (pulmonary function testing ) repeated as >it has been >one year since the last, so he did that on Monday. The > >allergist/immunologist doctor called today and his diffusion capacity >has >decreased from 65% to 56%. He consulted Rob's pulmonologist and they >want >to do a CT of Rob's chest. He just had one done about a year and a >half >ago, so at least there will be something to compare to. I was >really >upset, because the allergist wanted me to call Dr. Passo, because >he is >concerned that perhaps the MTX might be the culprit, since Rob was >begun >on MTX last June, and the diffusion capacity has decreased since >then. I >called Passo's office today, but they were already closed, so I >left a >voice mail and also emailed Dr. Passo asking him to call the >allergist >and discuss it. >I am not only concerned about his lung >function, but also worried that if >the MTX is the culprit and he has to >go off it, what are we going to do. >He cannot take any of the anti-TNF >drugs yet because of the TB exposure, >and although Rob is not in >remission yet, the MTX has brought him some >improvement. >I guess I'll >have to sleep on it. I'll update tomorrow after I hear from >Dr Passo. > > and Rob 14 Spondy > > > >Get fast, reliable access with MSN 9 Dial-up. Click here for Special >Offer! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2004 Report Share Posted February 20, 2004 Helen:Rob can't start Enbrel. He was somehow exposed to TB and had a positive TB test and this prevented him from beginning Enbrel. So that is not an option. I heard about Nick's day. I hope he was able to stay at school and not feel too terrible. It seems like when the weather is changing (as it is here, 50 degrees after being in the 20's and 30's) our kids seem to feel worse. Thanks for your thoughts. and Rob 14 Spondy On Fri, 20 Feb 2004 13:01:33 -0600 "Helen Burger" <hburger64@...> writes: Maira, Im so sorry Rob is dealing with all this. I hope you get some answers soon and get get his medications worked out. Sounds like the sooner he can start enbrel the better. Thinking of you both... hugs Helen, mom to (6,systemic) Hugs..Helen DH Dan DS's (20)(14)(12)Zachary(9)(6) DD (4)>From: snooksmama@... >Reply- >rustyroom , >Subject: If its not one thing.... >Date: Thu, 19 Feb 2004 20:52:48 -0500 > >Well, Rob had to have his PFT (pulmonary function testing ) repeated as >it has been one year since the last, so he did that on Monday. The >allergist/immunologist doctor called today and his diffusion capacity has >decreased from 65% to 56%. He consulted Rob's pulmonologist and they want >to do a CT of Rob's chest. He just had one done about a year and a half >ago, so at least there will be something to compare to. I was really >upset, because the allergist wanted me to call Dr. Passo, because he is >concerned that perhaps the MTX might be the culprit, since Rob was begun >on MTX last June, and the diffusion capacity has decreased since then. I >called Passo's office today, but they were already closed, so I left a >voice mail and also emailed Dr. Passo asking him to call the allergist >and discuss it. >I am not only concerned about his lung function, but also worried that if >the MTX is the culprit and he has to go off it, what are we going to do. >He cannot take any of the anti-TNF drugs yet because of the TB exposure, >and although Rob is not in remission yet, the MTX has brought him some >improvement. >I guess I'll have to sleep on it. I'll update tomorrow after I hear from >Dr Passo. > and Rob 14 Spondy Get fast, reliable access with MSN 9 Dial-up. Click here for Special Offer! Quote Link to comment Share on other sites More sharing options...
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