[John Sharman]

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 Duke’s Pulmonology department as well as Johns Hopkins. I believe I am still alive because of this treatment. I don’t know if IPF patients experience the same level of inflammation.

[John Sharman]

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!

[John Sharman]

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.

[John Sharman]

This is an excellent synopsis around Pulmonary Fibrosis.

[John Sharman]

<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 Rituxamab Infusion therapy.  Time will tell if it slows my lung loss down because I have very little left.  I am 71 years old.</p>