What is your experience of Rituximab infusions for Wegeners?

[Condensation]

Hi there,

I hope everyone is well!

I was diagnosed with Wegeners last year. I had a cycle of Cyclophosphamide and was on Azathioprine and Prednisolone after. Lately I had nose bleeding (one lasted for an hour) and also bad conjunctivitis in one of the eyes for 2month ,what didn't go away with increasing the dose. The doctor wants me to change the medication to Rituximab infusions. Has anyone had a similar experience? I am a bit concerned . It seems quite early for a relapse and I feel it is back to square one. How is your experience of Rituximab ?and how are you coping with going into hospital when you should be shielding.

Many thanks !

[Nadine99]

My husband with GPA (WG) had to try Cyclo, Myco, Meth, and Aza, none of which worked until he was given Rituximab. That put him into 'remission' but that only lasted 2 years and he's now back on 6mthly Rituximab infusions. You're in this for the long haul so settle down, alter your life so it's manageable and stay safe. I had to visit a hospital clinic the other day and it was very quiet and safe but I did wear a mask & gloves.

[Mooka]

Hi

I started on cyclophosphamide and then went on to azathromicin but still had grumbling sulymotoms. I then started rituximab. It takes a while to kick in but did give me a better quality of life. I haven’t had rituximab for over 3 years and don’t take any meds for my Vasculitis. Unfortunately it did rob me of my immune system leaving me open to a lot of infections. Take something to hospital with you as it gets a bit boring. I don’t have any experience of going to hospital since this started. Good luck to you whatever you decide.

[Suzym2u Moderator Vasculitis UK]

How many cycles of cyclophosphamide IV did you have initially?

[Condensation]

I had 7cycles of cyclophosphamide initially .

[AmyS1]

If you are under a centre of excellence re vasculitis you should be fine. Ritiximab is v good. Lots of studies especially for people who relapse on Cyclophosphamide.

[kitkatmum]

Hi, for me, Rituximab was first given two weeks apart , this last Christmas as an Inpatient at hospital. I was also on iv steroids, antibiotics and fluids. I'm due the Rituximab every 6 months for at least the next two years. Currently I a taking prednisone, azathioprine, antibiotics and vitamin d , all on prescription.

The actual infusions didn't give side effects other than blood pressure climbing and temp going up so they slowed the speed of the infusion. They did this on the second one too, to counteract any side effects.

Other than that, no major side effects. It takes time to work in the body so also hard to know when it might kick in.

I've just started to have more energy on daily walks for my stamina when lockdown came and now I'm shielding so gone from no energy but encouraged to keep active to feeling more energy and shielding.

Energy levels vary Day by day, hour by hour. Had one main nose bleed which was scary after not having them for a while.

Hospital apps for my bloods consist of mask and hand gel . Had ct scan yesterday and the team were masked, gowned, visors, the whole shebang.

I hope Rituximab works for you and you don't have any side effects. The first one took hours so books, puzzles, iPad etc all came in useful. And snacks.

Take care.

[Main1234]

Sorry to jump in on this older post but your story sounds very similar to my OH.

We saw the consultant today and he is due to start Ritiximab in 10 days time as he is flaring with AZA and had already received 6 infusions of cyclophosphamide. I was wondering how you are doing and if your symptoms have improved .

Thank you

[Richtahoe in reply to Main1234]

Hi I’m new to this too. I was diagnosed with Wegeners last May 2020. Had Rituximab infusion 4 sessions 1 week apart in June. Right after the first day of infusion I felt better. Most posts I’ve read say It could take 4 to 6 months to fell the efforts. Everyone is different. I do recommend drinking lots of water before each infusion. It helps to find those veins. Bring a snack. To me the hardest part of the infusion it the needle. I don’t like needles. But when they found my vein the rest went smoothly. Everyone is nice at the infusion center. Hang in there. You are not alone. Take each day as it comes. Good luck with Rituximab.

[Main1234 in reply to Richtahoe]

Thank you for your reply. My OH was diagnosed 3 years ago and is having a relapse at the moment booked for next week. He has had a few flares in the past year which an increase in Pred seemed to control .

Will pack him some snacks and make sure he is well hydrated.

Hope you are keeping well