I have been treated with Rituxan for about 3 years now. My PF cause is known, so it is not IPF. It is Systemic Sclerosis Interstitial Lung Disease. I do have PF from this underlying disease. The Retuximab treatment addresses the associated lung inflammation associated with my autoimmune disease. It is not experimental is recommended by…

Read more

I have had Systemic Sclerosis Interstitial Lung Disease based Pulmonary Fibrosis since April 2019. I documented and graphed my steady decline in TLC, FVC and FEV as my disease has progressed. My Pulmonologist tells me he has not heard of stress negatively affecting oxygen saturation levels. I have noticed a direct correlation for me…

Read more

It all sounds suspicious, from the initial diagnosis without a lung function test to the early treatment without a confirming CT scan. To qualify for supplemental oxygen, Medicare has minimum requirements that must be met. OFEV coverage by Medicare Plans is minimal with copays exceeding $2,500 per month. Find a new Doctor!

I live at sea level and require supplemental oxygen upon exertion or high stress. Visited the mountains last week and needed supplemental oxygen 24/7. Definitely makes it harder to breathe when in higher elevations.

This is an excellent synopsis around Pulmonary Fibrosis.

<p style=”text-align: center;”>I too have Scleroderma based ILD.  I was diagnosed 4 years ago with ILD and 7 years ago with Limited Scleroderma.  I have been on Hydroxychloroquine for 6 years, CellCept for 4 and OFEV for 2. Due to a rapid decline in total lung capacity, I recently went off the CellCept and Hydroxychloroquine and started on… Read more

My Doctors are recommending this infusion treatment be cause I continue to lose lung capacity at an alarming rate.  It is considered a high risk treatment option so I am looking to find someone who may have been down this path.  I am already on the OFEV & CellCept plan.