Pulmonary Fibrosis Support Group

Hello How are you all? Well I'm a 44yrs old mother and wife and I was diagnosed with Pulmonary Fibrosis and Intersititial Lung Disease. I have been on prednisone off and on since 2003 and now they have me on a drug called Cellcept. Right now as I take this drug I feel no changes, just a little fatigue. I was having a hard time breathing when I would lay down at night it would take me a few minutes to catch my breath, but since on the Cellcept that is improving. I would like for someone thats taking this medication to share with me their experiences while taking this drug and please help me to feel somekind of peace of mind. The doctors advised me that we have to treat this disease aggressively and we cant wait any longer for me to decide whether or not I want to take these drugs, I just have a fear of all the drugs and their haorrible side effects. Also is there any advise on things I can take to keep me from being so open to infections, from taking these autoimmune drugs? Please share what ever information or advise, it will be appreciated. Thank you all and GOD bless

Post edited by: KayKayTexas, at: 08/22/2009 10:13 AM

KayKay, Firstly, we are not medical people but we are willing to give any help and support we can. I welcome you to this group which, so far, is rather quiet. I can tell you that Brid, my wife, was on Prednisone and did very well on it.She was not on Cellcept at any stage so I cannot comment on that. If there is anyone else in the group that has experience of Cellcept please jump in and give us your experience of it.

You could look up Cellcept on line and they give the possible side effects. Trouble is they give too many side effects or rather possible side effects and that is not very helpful. Your doctor, of course, should answer any queries that you have.

Stay in touch and keep us posted.

cheers

Tony

Thank you for the information Tony, but I have done all my research online and now I just want to hear first hand Tony from others, thats going through what I'm actually going through and living it day to day and on the medications. I have read on Cellcept and I have asked my doctor all of those question, all I want to do is chat with others that actually have the disease and see how they cope day to day live with this lung disease. Thanks for your input.

I understand, KayKay, and I admire what you are doing. Well done. I found myself that it is so important to keep on top of the meds and had to take Brid off several tablets that were doing harm to her.

Keep up the good work.

Tony

If it is helping I would stay with it. If you go off of it and the disease progresses, you will not be able to get that back. The most we can hope for is to be stable.....there is usually no getting better....it also depends on the type of pf that you have.....if they can find the cause they may be able to reverse some of it.......normally once the tissue is scarred that's it.

B