Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 I had my VATS 2yrs ago and was told I had IPF confirmed by the Mayo Clinic. I switched then to a Pulmo at Loyola Hos by Chicago and was put on Prednisone and Imuran . The Imuran made me sick after 3 months so I quit taking it but I have continued to be on varying Mg's of pred for 2 yrs. I saw a rhuematoligist about a year ago and since have been told I have systemic scleroderma raynauds and sjogrens. She and my pulmo are convinced the vats was incorrect and my fibrosis is caused by the scleroderma so I was on cytoxan and prednisone to stop the inflammation. It lowered my immune system so low that I got a UTI that jumped even though on cipro to my blood and then I got pneumonia. It has taken me these 7 weeks to finally start to feel okay. I was never on oxygen before but use it 24/7 but the pulmo thinks the damage wasn't as bad as expected this time and in several weeks I may be able to not have to use it as I recuperate. I have been scheduled to meet with a specialist at Northwestern to see if I qualify to start a study on a drug called Gleevec and its affect on scleroderma. I am a little apprehensive since I still have a low immune system from the cytoxan yet but both Dr are excited and hope I get accepted as they say this is a very gentle drug compared to the cytoxan. I will go and see what they say but has anyone else taken Gleevec (imatinib)yet and what were their results.Thanks IPF 2/07 Scleroderma Raynauds Sjogrens IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 ... you've really been through the wringer haven't you. This disease takes us down some rocky roads... I personally have not heard of Gleevec but others here probably have. I'm just sending good wishes for you and a couple of good warm hugs. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Gleevec I had my VATS 2yrs ago and was told I had IPF confirmed by the Mayo Clinic. I switched then to a Pulmo at Loyola Hos by Chicago and was put on Prednisone and Imuran . The Imuran made me sick after 3 months so I quit taking it but I have continued to be on varying Mg's of pred for 2 yrs. I saw a rhuematoligist about a year ago and since have been told I have systemic scleroderma raynauds and sjogrens. She and my pulmo are convinced the vats was incorrect and my fibrosis is caused by the scleroderma so I was on cytoxan and prednisone to stop the inflammation. It lowered my immune system so low that I got a UTI that jumped even though on cipro to my blood and then I got pneumonia. It has taken me these 7 weeks to finally start to feel okay. I was never on oxygen before but use it 24/7 but the pulmo thinks the damage wasn't as bad as expected this time and in several weeks I may be able to not have to use it as I recuperate. I have been scheduled to meetwith a specialist at Northwestern to see if I qualify to start a study on a drug called Gleevec and its affect on scleroderma. I am a little apprehensive since I still have a low immune system from the cytoxan yet but both Dr are excited and hope I get accepted as they say this is a very gentle drug compared to the cytoxan. I will go and see what they say but has anyone else taken Gleevec (imatinib)yet and what were their results.Thanks IPF 2/07 Scleroderma Raynauds Sjogrens IL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 ... you've really been through the wringer haven't you. This disease takes us down some rocky roads... I personally have not heard of Gleevec but others here probably have. I'm just sending good wishes for you and a couple of good warm hugs. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Gleevec I had my VATS 2yrs ago and was told I had IPF confirmed by the Mayo Clinic. I switched then to a Pulmo at Loyola Hos by Chicago and was put on Prednisone and Imuran . The Imuran made me sick after 3 months so I quit taking it but I have continued to be on varying Mg's of pred for 2 yrs. I saw a rhuematoligist about a year ago and since have been told I have systemic scleroderma raynauds and sjogrens. She and my pulmo are convinced the vats was incorrect and my fibrosis is caused by the scleroderma so I was on cytoxan and prednisone to stop the inflammation. It lowered my immune system so low that I got a UTI that jumped even though on cipro to my blood and then I got pneumonia. It has taken me these 7 weeks to finally start to feel okay. I was never on oxygen before but use it 24/7 but the pulmo thinks the damage wasn't as bad as expected this time and in several weeks I may be able to not have to use it as I recuperate. I have been scheduled to meetwith a specialist at Northwestern to see if I qualify to start a study on a drug called Gleevec and its affect on scleroderma. I am a little apprehensive since I still have a low immune system from the cytoxan yet but both Dr are excited and hope I get accepted as they say this is a very gentle drug compared to the cytoxan. I will go and see what they say but has anyone else taken Gleevec (imatinib)yet and what were their results.Thanks IPF 2/07 Scleroderma Raynauds Sjogrens IL Quote Link to comment Share on other sites More sharing options...
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