Hello All,

I said I would let you all know how my infusion, concerns etc. were.

I did not sleep the night before I was due to go in due to nerves and was panicky.

Up at 6.50 shower the usual had cup of tea and waited for the life from a friend to
take me on the 40 min journey to Hospital. I felt sick and didn't want to chat
but my friend made sure she was going to make me talk. Ha ha.

9.00 am. Welcomed to the Day Ward. Put my mind at rest and very attentive.
The usual obs. done such as BP, wee dip stick, temp, - all ok.
9.30 am. Had injections of paracetamol, aniti histimine and steriod. Was left
for this to work for 3 parts of an hour.
10.15 am The big Rituxamab began, slow at first. Within half hour a head ache
started. Gradually increased the rate of the RTX but after 2 half hours had to
stop it the pain on right side of my head and shooting pains in my right ear
were extruciating. The infusion was was for near an hour whilst i was given
more paracetamol. Lay and slept on my bed. Still every thirty mins my obs being taken religiously.
Noon - given a sandwich and a cup of chicken soup. Although head still there
but not as bad it was. Happy to lie on the bed though.

Continue till 4 pm and then all finished. Left Hospital for home feeling very tired, woozy, still
a bad head , extremely tired - but otherwise ok. phew.

Went to bad at 9. and slept through for 11 half hours.

First Day - after

Well looks like I have been in the sun and fallen aslleep. My face and neck is
scarlet with a 'ras' type thing going on - not itching felt hot and looked extremely silly.
Head still there and still feel tire - otherwise ok

Second Day after - face still red - but fading - still very tired and 'far away'.

So all in all hopefully I wont get any other side effects. So not as frightening as I was expecting.

Rose x

Hi Rose

You were very brave. I would have been terrified. You did have a bad few days with it. I hope things are settling down now and you feel much better soon.

Sheila x

Hi Rose,

Well done for getting through the first dose!
Hope the headache and redness settle down soon and the rituximab works well for you.

Love Doreen xx

Hello Rose

Hope everythings settling down now.

First session is now done so I would think that next time 'the journey into the unknown' won't seem to be so bad. I think you have been very brave and you should be proud of yourself.

Really hope that this one works for you.

Love Paula xx

Hello Rose

Hope your feeling better since the infusion. I think your very brave for continuing the treatment, I have everything crossed that it is "your wonder drug".

Love
Belinda
xxxxx

Hi Rose,

I really hope this is the one for you, you have been so brave, the thought of these infusions really scare me. Remember to keep a diary so you can reflect on how things are going. I remember when starting my treatment I made myself ill at the thought of all these tablets. But hey that was many moons ago now.

All the very best, keep smiling.

Thinking about you Lorna xx

Hi Rose

I really hope that the new drug works for you. You are very brave to have infusions as the thought of them really scares me.

Hopefully the whooziness will go and your body will good used to it after a few times.

Love Shirley x

Hi Rose,
well done. Thank you for letting us all know how you are doing and coping. I am so up and down at the moment. one minute so positive then the next wobbly. counting the days till mon 7th nov, my 1st infusion. It does help reading about it all. I have tried talking to Hubby and sis and they like to say go for it. but still doesn't stop mind jangling and doubts creeping in.
sue v xx

Just to thank you Rose for posting your blog on Rituximab.

My experience on it has been so similar to yours this time, redness and v hot face, neck etc and mega headache (especially on right side and into ear!).

I had two infusions of RTX 2 years ago, then not allowed any biologics since because of a serious infection, but had been on Infliximab and Enbrel for previous 7 years altogether and something was already brewing though masked by steroids.

Had another go on RTX 2 weeks ago and due for the second lot tomorrow. Got my drink with a straw and book ready for the long day. But the staff are so good and I always feel very safe on the Day Ward as they monitor you so closely.

Do hope you will feel the benefits of this drug before too long. Good luck to everyone else who will be starting on RTX in the near future.

Take care,
Lizxx

Hi Rose

When are you having your follow up infusion? Must be about due! My first one today

Lyn xx