Hi
I have PF caused by mixed connective tissue disease. I have been on Mycophenelate Mofetil (Cellcept) for many years but my lung functions continue to decline. My dlco is now 34% predicted.
My question is whether anyone on here has experience of Rituximab or Cyclophosphamide?, how did you react to the treatment and what benefit did it give you.
Thanks in advance
Andrew
I had rituximab about three years ago for rhuematoid art. The RA pains are gone and have been for these three years. Seems my immune system was very depressed the first year after with result of chest conjestion and unknown virsus working. However, no other side effects and great to be pain free. We all differ so this may not be the case for you. I am glad to have had the treatment now I am better as to virsus.
I have had both. I started on cyclophosphamide, had about 3 treatments and they realised it was having no effect so stopped it. Since I have had 3 cycles of rituximab usually 12 - 18 months apart. They really made me feel better for a few months. Unfortunately I can’t have any more as they have reduced the funding for it and I don’t fit the criteria for an urgent case.
I too have Mixed Connective Tissue Disease which has caused the PF. My gas transfer is at 21% (eek) but I have been stable for the past 2 years. I have the added problem that I can not tolerate mycophenolate! I think as with a lot of drugs for this it is a very personal thing, only your body will be able to tell if it’s good or not.
Hi AngieB72. I'm sorry that your gas transfer is so low, I should feel lucky that mine is 34%. I do not know whether I will have Cyclophosphamide or Rituximab as it is a blind trial run by the Brompton to compare the effectiveness. It's great that your gas transfer has been stable. This is what I am hoping for as mine has show a significant decline in the last 9 months.
Hi, I also have the same diagnosis as you since 2006 and had several treatments including Cyclophosphamide which helped for a moth or two. It was starting to be very distressing when it was administered so I decided I wouldn’t have anymore.
After having one of the infusion in 2012 I was admitted to hospital with a chest infection, I then asked if I could have oxygen to help me and was then sent to see the lung consultant (I was only seeing a Rhuemathologist),Who then referred me to the team who did the test to see if I did need oxygen and how much.
In May 2013 I started on ambulatory oxygen 4liters per minute but I was still feeling distressed when I walk so it was changed to 6liters perminutes.
In the meantime I was sent to a combine clinic and Rituximab was discussed and it took three years for me to get the funding. I have been given this drug between six and almost twelve months apart but not seeing much improvement. I have had the last dose two weeks ago and will be going for a lung function test on Monday.
Praying there will be some improvement not just for me but everyone living with limited lung capacity.
Hi Maureenpearl. I have just started on ambulatory oxygen a 4lpm, it helps with walking. Sorry to hear that the treatment hasn't made much improvement. I don't think that I am expecting an improvement, I just want to stop getting worse.
After this year's flu jab I had some sort of reaction. For about a month I was totally out of great doing the smallest task, I guess it was an insight into the future if things do get worse. The GP couldn't really help and no-one could explain it. It was very scary but I gradually improved. Good luck with your function tests on Monday
Regards
Andrew
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