Rituximab maintenance & breathlessness

Update - spent a couple days in hospital. Besides the Fibrosis, showing inflammation in the lungs. The consultant says this could be a virus or allergy (Rituximab). They certainly did not dismiss the theory of Rituximab being the cause. So home now with course of steroids and continue with oxygen until my sats improve. Just a case now of time will tell. Thank you guys for your concern. 

Keep well

Liz x

Hi Liz, good you are home and can get some recovery time x

good you are home, it should speed your recovery hopefully

Thanks John x

Thanks Mike x

Hi liz

Im currently on Rituximab maintenance injections and on No 8 in jan.

I too have breathing difficulties like breathlessness and a very chesty cough that only arrived after my 2nd injection.

My consultant organised a chest xray but this came back clear and he thinks that its a side effect of the injections. He has also said i can finish the injections if i wish to but im 50 50 about it.

Im hopeing that if i decide to finish the injections then my breathing will improve and the cough will disappear after time.

But im also concerned that if i stop my injections then the tumours i have will spring back into life quicker.

So as you can imagine this is giveing me a little bit of stress my family have been great and gave their side of wot they would do.but im still 50 50

All the best of luck for the future and best wishes for a very happy christmas to you and your family x........ steve 

Hi Steve

its reassuring to me that I’m not the only one this has affected. My haematologist dismissed this completely as he’s never come across it. 

I have had 9 injections and with each subsequent injection my breathing got worse. I now have oxygen at home and I too am praying when the Rituximab is finally out of my system that my oxygen levels will improve and I can get off this oxygen. 

I’m so sorry I can’t advise you which way to turn and I do understand your feelings about stopping the treatment but for me it was actually (I feel) safer for me to discontinue than carry on as I really didn’t know how the next injection was going to affect me.  

Please keep in touch and let me know how things go. 

Wishing you & your family a healthy and happy Xmas and I’m sure you’ll make the right decision for you. 

Kind regards & best wishes

Liz x

Welcome to the Community Steve . 

Some treatment journeys can bring unwanted challenges and it is a balance as the benefit and risk.  had a great team and trusted them 100% and had to push through on a number of occasions.

If the breathing issues are effecting daily life then its all about balancing what your consultant is saying with regards to long term effects on the effectiveness of your treatment.