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    • #33910
      John Sharman

        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.

      • #33916
        Ande Cohen

          John Good Morning, I have been on cellcept and Rituximab since 2020. I was stable and they stopped the Rituximab but after what would have been the next round I regressed. I currently receive the infusions at a 4 month interval. It works wonders for me and the only side effects I have seen is some fatigue the day of and after the infusions.

        • #33922
          Richard Halderman

            I have been through the Rituximab infusion. Every 6 mo for 2 years and had no problem with the treatments. The main thing is it kills your immune system. You have to be very careful where you go and who you are around. My infusions were more for ANCA Vasculitis and it worked tremendously. Added benefit is it slows the IPF by killing your immune system.

          • #33926



              I am on Cellcept 3000mg per day and I just had my 5th Rituxinab infusion and going for my 6th one next week- honestly it’s been the best thing for me as it’s kind of helped stopped the progression (touch wood)  and my cough is at bay. I can definitely feel when the 6 months is starting to wear off as my inflammation starts up again.

              The downside for me is I am allergic to the infusion so I need to take high doses of Benadryl or i feel very itchy and burning – but we have learned that the higher doses of Benadryl  make it so much easier and that only lasted 24 hours so worth it to have progression slow down.


              I am very happy I did it and thankful my insurance pays for it as it runs $15-20k per infusion and you need 4 per year.


              Good luck


            • #33927
              Catherine Leonard

                I’m very interested in the ritux treatment topic!

                Here’s my rather convoluted history:

                I received my first set of two ritux infusions last July, and had one 12/15 with the next scheduled for 12/29.  My pulmonologist zeroed in on my IPF telling me I have hypersensitive-pneumonitis, which boils down to an immune system disease.

                The ritux theoretically will keep my IPF from progressing.  I’m complicated by having had Hodgkins large B cell lymphoma, which designated to be in remission after last chemo April 2021, but now another spot is growing in my lung.

                Lung biopsy lead to pneumothorax, which means my lung collapsed and unfortunately not enough sample was obtained to identify.  So I have that unidentified … something growing.

                Because ritux was part of chemo cocktail, and tends to inhibit the lymphoma, it is considered to be a best of both world choices for me right now.  I seem to respond well to it, and am thankful my insurance covers it!  March CT and PFT will be the measure of how well it’s working for me.  The part about not having a functioning immune system given our covid world doesn’t really change my level of precaution when choosing to go out into public sphere.  I’m careful, but try not to give in to too much fear.

                I’ll keep an eye out on this blog and will check back in after the 12/29 and second of two infusions. (My infusions are given in six months apart in sets of two two weeks apart, and I use my port from the chemo.)


              • #33929
                Denise Stogdill

                  Hi John, I have IPF and began taking Ofev for the last 6 months.  I take 2000 mg of cellcept daily and I also do the Rituxan infusions every 4 months for the last 4-5 years.  I have done well with this compliment of medications.  I also get a little fatigued for around 24 hours after the infusion.  Good luck with your journey!

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