Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Ok , here goes. And remember, this is all just MY opinion, from my own experience..... But first, are you on prednisone? If so, did they take that into account in conjunction with the diabetes? Because once I stopped the prednisone my diabetes disappeared. The doc had gone on and on about how I would never be the same and that within 10 years I would have horrible side effects from the diabetes, that I would be injecting insulin, and now my blood sugar is 79 and 80 without drugs. As for the Cytoxan..that was the second drug I was put on in an effort to slow the progression of my PF. I was on prednisone first and it didn't seem to be working so the Pulmo added in the cytoxan. As for nasty, yes it is. Remember it's a chemo drug, even if it's given in lower doses and in pill form. They also have IV cytoxan. I have never felt worse in my life. I was 39 years old and felt 100. I got sick over and over again with every little bug that could find me. I lost my hair. I had no energy. I was sent into menopause, which NO ONE had told me would happen. The drug can also cause bladder cancer so you have to drink lots and lots of water. So, after nearly a year of agony my tests still showed progression. I ended up in the hospital with a lupus flare and my Doc decided to stop the cytoxan. My hair grew back very dark. Weird. I will never take another drug for PF as long as I live because while taking those drugs I am NOT living, I am existing. Until they say " here, this pill will cure you " I am toughing this thing out. Ask your doctor if HE would take cytoxan or if he would prescribe it for any of his family members. Ask him what the stabilization rate is with cytoxan. Ask him how many of his patients have used this drug with good results. Make him give you a list of the side effects. There is NO cure for PF. The best they can hope for is to stop the progression for a while or slow it. If auto-immune diseases are the reason for the PF they will throw immunosuppressants at you in an effort to limit the inflammation, but they don't tell you how horrid the side effects will be. I'm sure others have had different experiences with their drugs, so I'll repeat, this is just MY experience and feelings. There is no such thing as " normal " after receiving the diagnosis of PF. Every day brings it's own new version of " normal " . Life has to be lived and looked at in a whole new light and luckily humans are resilient and capable of adapting. I'm not trying to discourage you from trying to fight this disease, but the Western doctors don't always have our best interests at heart. I had read what cytoxan does to a person before I took it, thinking I would be the success story. Oh how I wish I had heeded the warnings from the gentleman who wrote the article. Do your research and be armed with knowledge when you next see your Doc. Look up Imuran and ask the Doc about it. I did much better on the Imuran than I did on the cytoxan and the side effects are much less. It began to affect my liver so I had to stop taking it too. Plus, they didn't see that it was helping with the PF. I also tried Cellcept and it didn't work. At which point my Doc admitted that it was all a crap shoot because they didn't have anything that stopped PF. Best of luck. I will be praying for you and wishing you much endurance and strength in the battle ahead. Remember, we're all in this together and we're pulling for you! Hugs! Babs in Texas > > 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 25, 2008 Report Share Posted January 25, 2008 Babs and : I also had taken the cytoxan with no benefit, and the same side effects as Babs has described. It was also in conjunction with the prednisone and it was awful. There was no change and the doctors also told me it was worth a try. I hate it that I did everything they asked me to do without researching and asking many, many more questions. I, like Babs, will not take another drug for PF unless they tell me it is a proven cure. , I reiterate everything Babs has said. Ask lots of questions and make an informed decision. NSIP does respond differently, as I have read. And, I wish you all the luck. God Bless, Tina IPF 04/07 PH 11/07 Ohio > > > > 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 26, 2008 Report Share Posted January 26, 2008 S, I'm so sorry that you have developed Diabetes. It is so common when using Prednisone. I am so grateful, after all these years, to NOT have it. I pray that it does stabalize and you don't have to go on permanant treatment. Cytoxan is one of the treatments the docs are thinking of for me. It is not new. It was suggested when I was first diagnosed and I turned it down. Now, I am grasping at straws. And, no travel is not easy with all this equipment. Forget one thing and you have a catastrophe. Glad you are back safely. 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 26, 2008 Report Share Posted January 26, 2008 Babs, Thanks for this. I am going to take these Cytoxan questions with me when I go in Feb to see the new doc. This is all why I did not take Cytoxan the first time. The thing now is that if they don't do something I am a goner. But, I don't think I want to be killed with Cytoxan either. Choices are not real good right now. 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 26, 2008 Report Share Posted January 26, 2008 Good luck Joyce. Let us know what you decide to do. I just want to kick something really hard but I know if I do then I will have yet another bruise that won't heal and it would hurt and all. I have a really cool hat that belonged to my Dad I can wear if my hair falls out. I have a cool hat personality and plan to make bald cool in my world if the hair comes out. But we'll see what happens when it happens. S, Lubbock, TX NSIP w/PF 2006, Celiac, Type II diabetes > > > > > > 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.