Guest guest Posted July 10, 2009 Report Share Posted July 10, 2009 To make a long story short, when first dxed with IPF, Dr. Lasky noticed that I had psoriasis. Also about the same time, and because my lung function was near 40% and O2 was prescribed, he recommended that I start ENBREL. Unfortunately for science, he also prescribed 40 Mg. of prednasone. Neither he nor I are yet sure why I had a very good PFT a year or so after starting ENBREL. Has anyone here been a part of an ENBREL study? Insurance no longer will justify paying for ENBREL, but I have not heard other than anecdotal evidence that it was responsible for my improvement. Since that time, my PFTs have dropped, but remain steady, and I don't require O2 at this time. I am curious, and I am sure Dr. Lasky wonders also. Jerry/Mississippi/IPF/dx April 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2009 Report Share Posted July 10, 2009 Jerry The anecdotal information would actually imply something more based on your story and that is that you have a connective tissue disease which was the underlying cause of your PF. Did you have a biopsy and did it confirm UIP or was it possibly another form? Just saying the combination, the skin condition, the effectiveness of the meds gives such an indication although nothing is certain with this group of diseases. Reminds us this is not one disease but over 200 identified with many variations even within those. The different forms do respond differently. > > To make a long story short, when first dxed with IPF, Dr. Lasky noticed that I had psoriasis. Also about the same time, and because my lung function was near 40% and O2 was prescribed, he recommended that I start ENBREL. Unfortunately for science, he also prescribed 40 Mg. of prednasone. Neither he nor I are yet sure why I had a very good PFT a year or so after starting ENBREL. > > Has anyone here been a part of an ENBREL study? Insurance no longer will justify paying for ENBREL, but I have not heard other than anecdotal evidence that it was responsible for my improvement. Since that time, my PFTs have dropped, but remain steady, and I don't require O2 at this time. I am curious, and I am sure Dr. Lasky wonders also. > > Jerry/Mississippi/IPF/dx April 05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2009 Report Share Posted July 10, 2009 Bruce, Yes, in June 05, two samples were taken from the left lung and the surgeon did use the word " usual " . One reason I have stayed with Dr. Lasky is that he offered the opinion that the psoriasis and PF could be related. Being a researcher, it is difficult to imagine him saying anything is certain. He has asked if I felt like I began to improve immidiately starting prednasone, or did it seem more like I improved on the ENBREL. I can also say that neither pulmonoligist in thought there was a connection, nor did a rheumatologist. That only goes to show, as you have pointed out, that there is so much uncertainty. He tells me each time I am down to take good care of my skin, so you know it is on his mind. And as you imply, ENBREL may not help at all for some. Jerry/Mississippi/IPF/dg April 05 > > > > To make a long story short, when first dxed with IPF, Dr. Lasky > noticed that I had psoriasis. Also about the same time, and because my > lung function was near 40% and O2 was prescribed, he recommended that I > start ENBREL. Unfortunately for science, he also prescribed 40 Mg. of > prednasone. Neither he nor I are yet sure why I had a very good PFT a > year or so after starting ENBREL. > > > > Has anyone here been a part of an ENBREL study? Insurance no longer > will justify paying for ENBREL, but I have not heard other than > anecdotal evidence that it was responsible for my improvement. Since > that time, my PFTs have dropped, but remain steady, and I don't require > O2 at this time. I am curious, and I am sure Dr. Lasky wonders also. > > > > Jerry/Mississippi/IPF/dx April 05 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 Jerry Enbrel has been approved for Psoriasis, so I do not see why the insurance would not continue to cover the injections. It may just be a matter of the doctor supplying the proper ICD-9 Diagnosis codes for the psoriasis condition in addition to the ones for the PF. Psoriasis has been classified as a mixed connective tissue disease in some references that I have seen. Do you have any other symptoms, like joint pain that may be related to psoriatic arthritis? Tom AOSD 2004,Asthma 2006.NSIP 2008,Sjogren's 2008, > > > > > > To make a long story short, when first dxed with IPF, Dr. Lasky > > noticed that I had psoriasis. Also about the same time, and because my > > lung function was near 40% and O2 was prescribed, he recommended that I > > start ENBREL. Unfortunately for science, he also prescribed 40 Mg. of > > prednasone. Neither he nor I are yet sure why I had a very good PFT a > > year or so after starting ENBREL. > > > > > > Has anyone here been a part of an ENBREL study? Insurance no longer > > will justify paying for ENBREL, but I have not heard other than > > anecdotal evidence that it was responsible for my improvement. Since > > that time, my PFTs have dropped, but remain steady, and I don't require > > O2 at this time. I am curious, and I am sure Dr. Lasky wonders also. > > > > > > Jerry/Mississippi/IPF/dx April 05 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 Jerry/Tom I've seen others with Dr. Lasky's office have this same insurance problem and it's all a matter as Tom says of how the order and prescription are submitted and justified. It must read properly for the connective tissue disease as thats what its approved for. It won't be approved for Pulmonary Fibrosis as its not approved for it. I hate when doctor's offices fail to take the time to both understand and to process things in a manner to get them approved. As I know Dr. Lasky's office has been through this more than just for you, they should be use to jumping through the hoops correctly. > > > > > > > > To make a long story short, when first dxed with IPF, Dr. Lasky > > > noticed that I had psoriasis. Also about the same time, and because my > > > lung function was near 40% and O2 was prescribed, he recommended that I > > > start ENBREL. Unfortunately for science, he also prescribed 40 Mg. of > > > prednasone. Neither he nor I are yet sure why I had a very good PFT a > > > year or so after starting ENBREL. > > > > > > > > Has anyone here been a part of an ENBREL study? Insurance no longer > > > will justify paying for ENBREL, but I have not heard other than > > > anecdotal evidence that it was responsible for my improvement. Since > > > that time, my PFTs have dropped, but remain steady, and I don't require > > > O2 at this time. I am curious, and I am sure Dr. Lasky wonders also. > > > > > > > > Jerry/Mississippi/IPF/dx April 05 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 Tom, As of recently, topical medications have proven moderately effective for my psoriasis. I have not found that dermatologists are aware that psoriasis could cause much else other than arthritis or scaling. So far, Dr. Lasky is the only medical professional who has voiced the idea of a connection. When Humana dropped Enbrel from my approved list. My dermatologist did take hand X-rays to check for arthritis, but none showed. Unless there is more concrete evidence of a connection acceptable to Medicare, I doubt see much chance of approval. > > > > > > > > To make a long story short, when first dxed with IPF, Dr. Lasky > > > noticed that I had psoriasis. Also about the same time, and because my > > > lung function was near 40% and O2 was prescribed, he recommended that I > > > start ENBREL. Unfortunately for science, he also prescribed 40 Mg. of > > > prednasone. Neither he nor I are yet sure why I had a very good PFT a > > > year or so after starting ENBREL. > > > > > > > > Has anyone here been a part of an ENBREL study? Insurance no longer > > > will justify paying for ENBREL, but I have not heard other than > > > anecdotal evidence that it was responsible for my improvement. Since > > > that time, my PFTs have dropped, but remain steady, and I don't require > > > O2 at this time. I am curious, and I am sure Dr. Lasky wonders also. > > > > > > > > Jerry/Mississippi/IPF/dx April 05 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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