[coreeta-mays]

I’ve been on Mycophenolate and prednisone for about a year now. My treatment was prescribed by my rheumatologist to treat my lupus. It’s believed that my PF is a result of my immune system attacking my lung . I started on 3000mg of Mycophenolate per day and 40mg of prednisone. I’m currently on 2000mg of Mycophenolate and 25mg of prednisone. I’m hoping to be able to get down to 5mg of prednisone over time in order to alleviate some of the side effects.

[coreeta-mays]

Hello Marianne,

Thanks so much for the information. Although the thought of exercise and being more active is a little unnerving, I’m also very excited about seeing what type of progress I can make. Even a little improvement is a win for me. I’m in the US, I live in California. Last year I was referred to the University of California, Los Angeles medical center to be evaluated for the transplant process but at that time it was still too soon. During that time, however, I had began dieting and even with going through my open lung biopsy I managed to lose about 30 lbs. The challenge for me arose when I was diagnosed with lupus and began taking steroids. The weight gain was almost instant. Not only did I gain the weight back that I had lost but I also packed on an additional 10 lbs on top of it off. So, I’m hoping that this Rehabilitation program will be beneficial for me, considering not only the exercise aspect but the nutritional information portion as well. I’m really glad that I found this forum because it really does help to connect with people who understand and can relate. I know my friends and family are in my corner but it’s really difficult for them to really understand the day to day struggle of it all. Thank you so much for your information.

[coreeta-mays]

Steve,

I’ve been using Serrapeptase for about 6 months now. I’m always looking and willing to try new things that may be beneficial to me. Thank you

[coreeta-mays]

Thanks Steve, that definitely gives me some encouragement. I know I’m on the younger end of the spectrum but sometimes I sure don’t feel like it. I have lupus as well, so I struggle with extreme fatigue as well as a few other autoimmune related symptoms. I’m very determined and hopeful though. Thank you for your response.

[coreeta-mays]

I’ve never been an avid exerciser and it has become an overwhelming thought after being diagnosed with PF. Prior to being diagnosed, I began to notice my inability to complete fairly low impact activities. Initially, I brushed it off as me just being lazy. Once I was diagnosed everything made much more sense. I couldn’t believe it. I was 36 yrs old and after my open lung biopsy the diagnosis became conclusive. This was July  2018 and at that time, I was still only using 2L of supplemental oxygen overnight and as needed with activity. Just last month I had an acute exacerbation and as a result I’m currently on 3L of oxygen almost 24/7. After the exacerbation, it became very apparent that I needed to begin to take the necessary steps to become more active and change my lifestyle. I had my pulmonologist refer me to a Pulmonary Rehabilitation program. I have orientation next month. I know that in order for me to be considered for transplant at UCLA I’ll need to lose some weight. This is probably something that I should have been doing a lot sooner but the idea of working out was so daunting to me. The coughing, the shortness of breath, dizziness, etc. I’m just glad that there are people out there who can relate to this struggle but who are also successful. I know it won’t be easy but it is honestly a matter of life and death.

[coreeta-mays]

In my case, I had been with my company for 15 yrs when we received the news in February 2019 that our location here in California would be closing. I was given the option to accept a relocation package to our Ohio office but due to my medical condition, I declined the offer. Due to my PF being a result of an autoimmune disease, I was being treated with high doses of steroids and immunosuppressive medications in conjunction with my anti fibrotic medication, Ofev. During the course of my treatment, I became an easy target for colds and infections. The environment in which I worked was comprised of about 130 individuals in an enclosed call center setting. The risk of infection became too frequent and with the closing of my office location,  I knew it was basically the end of that chapter for me. I recently had a bout with an acute exacerbation which landed me in the hospital for a while. Prior to my hospital stay I was only on supplemental oxygen overnight and with activity. Post hospital stay, I’m currently on 3L of oxygen 24/7. At the moment, I’m basically taking time off to make the necessary health adjustments and map out my next career endeavor. Needless to say it will probably require me the need to work from home.