Guest guest Posted January 26, 2008 Report Share Posted January 26, 2008 Joyce, I'd like to weigh in here and just like Babs this is how it has worked for me. My 1st hospitalization was in April 1996 (I once wrote it was '95 but I'm numerically challenged) the month and year my first grandchild was born. I was 47. Since that time I have never been off prednisone, I only take 10/day now. I have used Imuran twice, once for 3 months and later 6 or 7 months. I tried interferon gamma b, twice. I also tried cytoxan after 6 weeks I had to stop. All of the preceding made me sick in varying degrees, the side effects of all are many and they are serious. In addition I am taking bosetan (Tracleer) and have not experienced any serious side effects. I've been taking it for about 5 years but still have to have liver function checked every month. But I tried everything at least once because we know so little about about our disease. There are so many different dxs, some of us have autoimmune disorders, some of us have mctd. I think one of the reasons there is no cure is because there so many different " kinds " . It is like trying to find one cure for all " cancers " . I had my biopsy done in May '96 and they didn't know what I had even then and they continued to test that sample for at least 2 years until it was all gone. About a year ago I was given the NSIP dx but as I have said before, it is only because I have managed to survive this long. Joyce, I know it has been a long road for you, too. To be honest, Cytoxan was the worst of all the medications I have taken, but that is just my experience. I wouldn't take it again. But if there was some other drug out there that my doc wanted me to try, I would, despite the side effects. If it made me miserable I would stop. I don't feel at this stage that I have many options left. You are in my heart and in my prayers, Kathie WA NSIP 96, etc... > > > > > > > > Just back from little trip to Alabama last week. Travel is > > > certainly > > > > not as easy as it used to be. > > > > I had visit with my pulmo doc on Monday. He is considering cytoxan > > > > treatments if I don't stabilize by March. Also he sent me to my > > > > internist who added something new to my list of ailments - unstable > > > > Type II diabetes. We are trying 1000 mg of Metformin twice a day > > > with > > > > Glipizide but that will change to insulin if that does not > > > stabilize > > > > within a month. > > > > > > > > So what is cytoxan like? It looks nasty. > > > > > > > > Yet again, normal is not what it was yesterday. > > > > > > > > S, Lubbock, TX > > > > NSIP w/PF, Celiac & Type II diabetes > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 Kathie and Babs, Thank you both for your input. I have been thinking a lot about what I am going to agree to do. The docs are discussing it among themselves and I will talk to the doc on the 4th. I also took Methotrexate and Imuran and could not tolerate it. I didn't take Interferon. I used Cellcept for 9 years. I have refused up to this point using Cytoxan. I can not find any positive results or anyone that had success in using it. It always makes people so sick. I think my Rheumatologist will push for Retuxan. But you want to know what my self diagnosis is? My swift slide downhill these last 4-5 months? I believe that I have developed PH. My regular pulmo does not think so but the new doc thinks it is worth looking at again. I just got the HRCT report and the nurse read it to me on the phone....it said enlarged pulmonary arteries both sides...um hum.....just did an echo, so we should know soon. I also have Coronary Artery Disease....so, who knows? I just think if my distress is being caused by the onset of PH, then why not just treat that and skip all the immunosuppressants? I am hoping that I don't even have to make the decision. As sick as I am, I will get knocked flat by Cytoxan and his friends. I'm so thankful that we have this group. The information that we share is priceless! Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong> > > > >> > > > > Just back from little trip to Alabama last week. Travel is> > > > certainly> > > > > not as easy as it used to be.> > > > > I had visit with my pulmo doc on Monday. He is considering > cytoxan> > > > > treatments if I don't stabilize by March. Also he sent me to > my> > > > > internist who added something new to my list of ailments - > unstable> > > > > Type II diabetes. We are trying 1000 mg of Metformin twice a > day> > > > with> > > > > Glipizide but that will change to insulin if that does not> > > > stabilize> > > > > within a month.> > > > >> > > > > So what is cytoxan like? It looks nasty.> > > > >> > > > > Yet again, normal is not what it was yesterday.> > > > >> > > > > S, Lubbock, TX> > > > > NSIP w/PF, Celiac & Type II diabetes> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 A lot of logic to what you say. Then it starts sounding like one choice is Revatio, which is approved for PH and still in testing for PF but has been used long enough by men as Viagra that its side effects are well known and generally not so great. Or there is Tracleer, which many are taking with minimal side effects although Tina just started and is having some. However, she may be fine after first few days. > > > > > > > > > > > > Just back from little trip to Alabama last week. Travel is > > > > > certainly > > > > > > not as easy as it used to be. > > > > > > I had visit with my pulmo doc on Monday. He is considering > > cytoxan > > > > > > treatments if I don't stabilize by March. Also he sent me to > > my > > > > > > internist who added something new to my list of ailments - > > unstable > > > > > > Type II diabetes. We are trying 1000 mg of Metformin twice a > > day > > > > > with > > > > > > Glipizide but that will change to insulin if that does not > > > > > stabilize > > > > > > within a month. > > > > > > > > > > > > So what is cytoxan like? It looks nasty. > > > > > > > > > > > > Yet again, normal is not what it was yesterday. > > > > > > > > > > > > S, Lubbock, TX > > > > > > NSIP w/PF, Celiac & Type II diabetes > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 Joyce, your diagnosis makes sense. Once you have the echo results you'll know much more. Enlarged pulmonary arteries sounds like SOMETHING, right? If you couldn't tolerate the Imuran then I would say the Cytoxan would really knock your body for a loop. It really is a nasty drug Joyce, and I would ask the Docs to seriously consider other means of treatment before they prescribe that demon. Are you confident in your doctors? It makes such a huge difference to feel that your Doc's are putting your best interests before their own agenda...whether that be supporting a certain drug or just being lazy, they need to consider ALL of your health issues before prescribing a new drug. I will be right here, waiting to hear what is going on. You are in my prayers, and I will support you in whatever you decide to do... Big Hugs from Texas! Babs > > > > > > > > > > > > Just back from little trip to Alabama last week. Travel is > > > > > certainly > > > > > > not as easy as it used to be. > > > > > > I had visit with my pulmo doc on Monday. He is considering > > cytoxan > > > > > > treatments if I don't stabilize by March. Also he sent me to > > my > > > > > > internist who added something new to my list of ailments - > > unstable > > > > > > Type II diabetes. We are trying 1000 mg of Metformin twice a > > day > > > > > with > > > > > > Glipizide but that will change to insulin if that does not > > > > > stabilize > > > > > > within a month. > > > > > > > > > > > > So what is cytoxan like? It looks nasty. > > > > > > > > > > > > Yet again, normal is not what it was yesterday. > > > > > > > > > > > > S, Lubbock, TX > > > > > > NSIP w/PF, Celiac & Type II diabetes > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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