Rituxan

[Shmily]

My husband has been getting infusions of Rituxan (prescribed by his rheumatologist) on the same schedule. He also takes Ofev. His last CT he was considered stable according to his pulmonologist. He has been receiving Rituxan since June 2023.

[Cu]

Hi. I don’t take this but after looking it up, I wonder if this is an approved use for PF as I see it is for RA and Cancer? Do you have info from where your doctor discovered this use?

[kenf]

I just asked ChatGPT about Rixuxan, here is the answer I got..

Rituxan (rituximab) is not specifically approved for idiopathic pulmonary fibrosis (IPF), and its safety in this condition is unclear. Rituxan can cause serious side effects, including infusion-related reactions (e.g., bronchospasm, hypoxia, and acute respiratory distress syndrome) and pulmonary toxicity, which may worsen respiratory function. Rarely, it has been associated with interstitial lung disease and acute pulmonary fibrosis. These risks should be carefully weighed, and any use in IPF should be under strict medical supervision.

Questionable ?

Ken

[GaryJ]

I thought the infusions were for inflammation. I may be getting them in the future.

[Coby]

I have been taking Rituxan since September 2022. Very successful so far. Stopped the progression of my PF at 10% scarring. Credit also goes to exercise, daily walking 2- 4 miles, Pilates 2X a week with breathing to increase lung function . Daily use of Aerobika or Volara lung cleaning and expansion devices. My PF was apparently caused by RA which the Rituxan treated. Dr Stephen Frankel @ National Jewish Health in Denver was amazing to figure all this out and set me on the right track.

[mimi423]

I take Actemra infusions since I was diagnosed with IPF from RA, I was taking Humira shots before that. At this point I think I’m stable, I see my dr next week. I’m a little afraid of Rituxan, I’ve had Ra for 25 years and I’ve read about them all and taken some of them.

[Patricia Meadows]

I was diagnosed with auto-immune PF in April, 2013 at age 58, and it was very aggressive. My respirologist put me on 50mg of Prednisone immediately. Within two weeks the dose was dropped to 30, and a week later to 20mg which I stayed on for three years, then slowly weaned off by June, 2017. I had two infusions of Rituximab (same thing as Rituxan, apparently) in June and July, 2013 and had absolutely no side effects. Long story short, I’m still here and still not on supplementary oxygen. I feel very blessed, and am sorry that not everyone has had the success I’ve experienced with Rituximab.

And I agree, it’s weird to read online that it’s actually meant to treat cancer. Not sure how my respirologist knew that it might work for PF, but I’m glad she did. And my fellow taxpayers here in Alberta funded it!

[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.

[J L LaBrack]

My rheumatologist originally prescribed that, but I opted for something less aggressive. He subsequently prescribed Orencia (abatacept), and I received 3 front-load infusions starting on 11 Nov 2024. They were 2 weeks apart and after 10 Dec 2024, I received my first regular monthly infusion on 6 Jan 2025. He maintains that this drug is better than rituximab and will mitigate the symptoms of both my rheumatoid arthritis and my IPF which I’ve had since May 2018. He also ordered a taper-down of Medrol pills (which caused increased pain and other symptoms. It’s hard to tell if there’s a benefit to Orencia yet. Has anyone else out there been put on Orencia, if so, has there been positive results??

[pastordan]

For some reason the system is not accepting my detailed reply. Trying a short statement to test it. Hmm. That went through fine. Might be the length?

[Kevin Schaefer]

Hi, @pastordan let me know if you have further issues. You can email me. I’m an admin here: [email protected]

[bayougal]

Like John-Sharman I have Interstitial Lung Disease because of Systemic Scleroderma, not IPF. I was diagnosed with this in 2004 after a year of bouncing around to different doctors. (As an aside, in 2003, IPF was diagnosed and I was given 3-5 years to live and told there was nothing that could be done for me.). In 2005, we were finally trying to decide a treatment for the Scleroderma ILD when Hurricane Katrina hit. I lived on the north shore of Lake Ponchartrain at that time. My pulmonologist moved to the Mayo Clinic in Rochester and my rheumatologist moved to John Hopkins. My pulmonologist came back but not my rheumatologist. I was introduced to a great Scleroderma rheumatologist, Maureen Mayes in Houston. I started going to her. She put me on Cellcept. I hated it. I had UTIs constantly and was sick with respiratory infections all the time. I stayed on Cellcept until 2018 when I had a major scleroderma flare. I was in 2 different hospitals for a total of 5.5 weeks. I was intubated for 4 days. That was horrible and terrifying. After getting off of the vent I was not getting better, but they could not figure out what to do. I was sent to a rehab facility which would have been my death bed if it had not been for my husband who searched for another pulmonologist. Off to hospital #2. At first they were treating me with mega antibiotics. At one point my white blood cell count went down to 0.9 – yes 0.9! My body was going crazy! They were at a stand still on what to do there until a new local rheumatologist was brought in. She suggested Rituxan. It was that thing that saved my life. After one treatment, I was able to leave the hospital. I had lost 25 pounds, weighed 80 pounds and was so weak I could only walk a few steps. I do two infusions 2 weeks apart every three months. I have been doing that since 2018. I left the hospital on oxygen (1.5 liters – or 2 if I am walking a lot outside or exercising) and I hate it, but… So, Rituxan was my savior and continues to be. Everyone seems to have a different protocol for Rituxan. I do consider it to be my miracle drug!

I also have Bronchiectasis and take 250mg of Azithromycin every day for it along with 10mg Prednisone as an immune system modulator. They would like me off of the Prednisone, but I have been unable to come off of it. Yes, it has nasty side effects, but the thing that has been suggested to replace it is Profgraf, another immune system modulating drug similar to Cellcept. Other nasty side effects. I am not inclined to change. Anyone have any ideas about Prograf?

[Rob Baker]

I am 1.5 yrs out from my bilateral lung transplant. In December (2024) I was diagnosed with post-transplant lymphoproliferative disorder (PTLD). My team decided to treat with immunotherapy using Rituximab. I’ve had two of four infusions. After the fourth, a repeat PET will tell us if the it’s being effective. But so far for lymphoma, it appears to be working well based on my EBV numbers. 🤞

[PattyB]

Like others, my IPF is from autoimmune (scleroderma). I’ve had 4 rituximab infusions, first two were two weeks apart, then every six months since then. About a month before the last one I was feeling horrible, confusion, trouble concentrating, aches everywhere. Immediately after the infusion I felt like a different person. I actually felt good and could think clearer. I had no side effects and my doctors are looking into me getting infusions more often.

[Pat Jorgenson]

My PF, like others, is autoimmune related as I have rheumatoid arthritis. I have been having Rituxan infusions since September, 2022. They are 2 infusions 2 weeks apart, taken every 6-7 months. They have been very effective for my RA and I have to think they have helped my PF as well as it is progressing slowly. I have had no side effects at all from the Rituxan other than feeling much better after the infusions. I cannot tolerate OFEV at all and Esbriet is not an option in Canada.