Hi Rose,
Do hope these side effects gradually diminish for you. Also that you will begin to feel the benefits - I was told 8-12 weeks at least.

If it's any consolation, it is always the steroids that cause this for me. I had my second dose of RTX too last Thursday (only 7 hours this time) and the same thing happened again for me. Face and neck and tops of arms very red indeed, bad headache and eye pain (behind the eye).

Began to improve after a week, except in the late afternoons/evenings and when I get too hot. Then yesterday I had 8 corticosteroid/local anaesthetic injections around my cervical spine (which really needs more surgery) done by the anaesthetist and from looking very pale this morning you could fry your eggs and bacon on my cheeks tonight!

Hope your infusion went OK today too Lyn.

Take care all,
Lizx

Thank you Belinda I am not really brave I have found the whole thing quite daunting really.

Annamarie - thank you for your confirmation about the steriods giving you the rash etc. It
does help to know of others going through the same as you are. We will be able to compare
notes. You say you are getting head aches as well . Do you work? How old are you if you
don't mind me asking. I am 57 so really hope now for the magic to work

Rose x

Hi Rose

Do hope you are feeling a little better today.

No I dont mind you asking my age at all, even though I've reached the grand old age of 65! However I've had pretty aggressive RA since I was 26, and so very many different drugs and operations since then. I actually feel lucky that they are still spending money on these expensive drugs for me with all that damage and havent written me off, but the RA is still very active and my consultant is a real gem. I've even nominated him for a local 'Health Heroes' award, which I am sure will embarrass him enormously, but just wanted to acknowledge all his efforts to keep me going.

I did manage to work on and off part time in between having 3 lovely children and over 20 ops and finally retired from paid work at 55, though I do a bit of volunteer counselling when I can manage it.
I just reduced my hours a lot and my employers were very good (local authority) but eventually it got too muchand I felt I wasnt able to give enough for my conscience though they didnt want me to leave.
I do hope yours are understanding, it makes such a difference.
I'm glad you got signed off, as after this kind of treatment it is best to rest if you can to give the steroids a chance to work. If the side effects get too bad they told me I could take over the counter Piriton and remember to drink plenty of water. I find I am very dehydrated after the steroids, but I have had hundreds of milligrams over the past 3 weeks .

Do take care and be kind to youself,
Lizx

Thank you Shiela for your wishes




Thank you Liz. You certainly have been through a lot in your life - aged 26 - you poor thing.
I still have the rash today but my head in easier. However I feel exhausted ! !

I was Manager in a busy Insurance Brokers and had a stressful job with long hours
and late night working and Sats. However, as I got so poorly last year I was off
work for 7 half months. So when I returned I started back 4 hours etc and increasing
up to 12 hours p.w. but could not manage to increase or cope with more as the RA still
not under control. So Management was taken away from me as they could not hold the
post open indefinatley. So I am still in the same office but as a Sales Exec so very odd and
different for me. However no late nights and no Saturdays - so YES my firem have been
kind to me. I do feel a failure though it does sound so pathetic to say I can't cope with
even 12 hours p.w. I am signed off next week but not sure what or how to do after that
at the moment.

Thank you.


x

Hi Rose

How are you now? Have the rash and headache gone? Do try and rest up if you are able it will help long term. I've had a very lazy four days but unfortunately the jobs seem to just sit around waiting for me so it's been hectic today!

Take care Rose, thinking about you

Lyn x

Bev and Ailsa

Thank you and Ailsa if I can help/answer anything of course I will



Lynn,

I have tried to rest since the 2nd infusion, however it was Carnival here in Burnham last night
and I was up late and stood up . So today I have been quite bad in pain been taking paracetamol
and tramadol today. So is this 'dreadful' drug going to work ? soon please. I am seeing my Doc
on Thursday and I think I will see if he suggests another week off. I still getting bad sharp pains
in my fingers , elbows and feet especially, even pains in neck to my ear. So not sure what all
that is about.

Going to have Wed and Thurs doing very little, we have booked Fri and Sat away to a village
pub/hotel on outskirts of Cheltenham with aim to go to the Races on Sat. so def want to feel
fitter for Sat. then Sunday we will drive around the Cotswold(I love the Cotswold) We are going#
with friends - so no driving for me. Just need to sit and relax and watch the sceanery.

Rose x

Sue - thank you. Agree with all your comments.

Rose x

Hope you had a good weekend Rose and chance to relax. Let us know how you get on with GP re going back to work. That bit worries me, especially as schools are not the best germ-free environment! Hope all the odd aches and pains are going. What advice were you given about this? How do you know what are normal and what is not right?

Take care - hope you enjoyed the races XX Ailsa

Rose

Make sure you speak to someone about the rash. My Rituximab was stopped because of a similar reaction.

Hope you feel better soon.

Jackie
xx

Hi Rose

Pleased to hear that you had a lovely break away. I think it is a good idea to have some steroids to tied you over til hopefully the rtx kicks in, I ve had them continually in varying doses and I wouldn t have been without them !

Hope your chest infection clears up soon, good job your GP has signed you off for the month.

Julia xx