First dose of Rituximab

[Lotphie]

Another 12 days and I’m due to go for my first Rituximab infusion. I’ve been quite happy on methotrexate and enteracept (embrel then benapali) injections for many years. Then I had severe pneumonia which left me with an interstitial lung disease. So Thorasics have told Rheumatolgy to take me off Methotrexate and benapali - nightmare! Flare ups have been awful. Then I get an autoimmune condition of my eye along with glaucoma. ( never seen so many different eye drops and medicines just for the eyes and getting some side effects. Anyway I’m lead to believe that this infusion is my way forward.

I’ve got my ‘about your Trixima (Rituximab) treatment’ booklet. But would love to hear the experiences of others and any advice for before, during and after. Should I isolate for a while after, etc.

Thanks and Love to you all

[AgedCrone]

Best treatment I have ever had….started in 2016..& it is still effective & I now only need one infusion every 6/7 months.I am very lucky with negligible side effects….just sometimes the odd headache a few days after the infusions.After long discussions with my Rheumatologist, I don’t have the Mtx or Methylprednisolone with it…….just the antihistamine pre infusion…..but that is just me…..I think most people do have both, but as the Mtx upset you so much…maybe you could discuss that with your doctors?

Good Luck ….I hope it suits you as well.

[Lotphie in reply to AgedCrone]

Thank you so much for your reply. I really appreciate your response.

[Lolabridge]

Hello. Snap! I was taken off MTX because it caused lung problems and Benepali was not sufficiently effective for me. I was given Truxima (a Rituximab biosimilar) and have my infusions every 6-9 months. Until a few weeks ago I was also having to take oral Prednisolone and could not have managed with out having been taken off Benepali and whilst waiting to start the Truxima.Recently I've been switched to Rixathon, which is a different biosimilar of Rituximab. I had only a single pulse rather than the usual two a fortnight apart that I was given on previous occasions. So far so good.

I do have the methylprednisolone "chaser" and the antihistamine before the infusion; it's to reduce the chance of any adverse reaction to the actual Truxima infusion. I had a slight headache the next day after my last infusion but mostly I don't have any side effects at all.

Because of the way Rituximab and it's biosimilars work you will need to take extra care after your infusions to avoid catching Covid or other viruses/infections.

It will take several weeks for the Truxima to work most effectively so if you are suffering a lot at the moment you could ask your rheumy team to prescribe a short course of steroids to help you.

I agree with AC that it's been a life changing drug for me too when everything else had failed or made me very ill. I started having Truxima in May 2019 and have just had my fourth cycle. It has a cumulative effect with each cycle and I feel better after each one.

Wishing you equal success with it too.

[Lotphie]

Thank you Lolabridge for your reply. Yes it sounds as if we have experienced pretty much the same. How are your lungs now after being on Truxima? I’ve also been taking oral prednisolone prescribed by both Rheumatologist and Ophthalmologist. Also back on Sulfasalazine and Hydroxychoraquine again even though they didn’t work first time. Your response has been very helpful. I’ve got to take a precautionary course of antibiotics which I’m not happy about but they think it’s necessary so I will. I know I will be carefully monitored.

So it looks like some weeks before I will be out again. So missing interactions with family and friends and especially grandchildren.

But I’m keeping positive that this drug will be good for me too and wish you the very best xx

[Lolabridge in reply to Lotphie]

I’ve had no new lung problems whilst on Rituximab although there is some residual scarring from before. I hope it works well for you as it has certainly been a game changer for me. Xx

[ks1966]

It’s an amazing medication. In a league of its own really. I agree with the feedback you got here and being cautious and taking extra precautions due to Covid. Good luck.

[Lotphie in reply to ks1966]

Thank you ks1966. Will take that advice.