Hello - I saw the rheumy nurse yesterday for a follow-up from 2 months ago. The rheumy said that I would have to start feeling and showing the benefits of Cimzia by now as I have been on it for 7 months. My DAS was down from 6.8 to 6.2 but has started to climb again, in spite of increasing the MTX. So, I have to stop it and wait 4 weeks before starting Rituximab.

I'm very grateful to everyone for their experiences they have shared on the forum - I seem to be in good company starting Rituximab! However, I am feeling rather down about it as I had never expected to run through the drug possibilities so quickly and end up here already.

Life is still really stressful at work, with OFSTED due within the next 3 weeks (again!), conversion to an Academy in Feb and constantly changing goalposts and practices. I'm wondering about taking the time off the week after the 2 infusions. I'm not good at being off as I hate going back to all the jobs still waiting, but really can't imagine being in such a stressful and infection-laden environment whilst feeling rough, wobbly and probably not sleeping from steroids. Do you think that is reasonable? I'd hate to think that people saw me as taking the easy option and staying off, letting everyone else get on with the stress at work. I'm fairly sure my GP would sign me off if I need it, but almost feel like I need permission somehow.

Hope this makes sense. I didn't sleep well last night and got up at 4 in the end, so not feeling at my best now! XX Ailsa

Hi Ailsa,
you have to put your health first. stop giving yourself a hard time. I had my first infusion yesterday, everything went well. slept most the time while there i zonked out completely in the afternoon. even got used to the beeping of the machine that is giving the infusion as every 30 mins it would go off telling the nurses to increase the dosage. felt really rough when arrived home but did have a long time to wait for my lift home as the roads around hospital had been jammed due to a bad accident. a very long day got home for 8.15 pm after leaving home 10. 30am. I did get up during night felt wide awake and was awake for at least 4 hrs. slept well when got back to bed. I think you have got to give your body time to get used to this powerful drug so take the time off.
all the best
sue v xx

Hello Ailsa,

Caught up with your post. Sorry that you have to change drugs again (you do appear to be similar to me
in that respect).

I know what you saying Ailsa, but I had to give myself a good talking to as well. I have been off
sick from work from the day of my first injection, and like you I kept telling myself 'get on with it Rose',
but my GP thought it a good idea to give the infusion a good choice of working for me. So I accepted
his sick note. Just as well as I really haven't felt well really, head pains, rashes, sharp pains in
hands, fingers and v sore feet. My DAS score was 6.9 as I started, and at the mo. it does not appear
to have come down at all.

So my advice is DO NOT FEEL GUILTY , you are a number at the end of the day and YOU
are the importance person Ailsa.


Rose x

Thankyou Rose- i know you are right. I've got an appointment with the Head today to tell her where I'm up to and I will explain about taking time off. Sorry to hear that you are still struggling. Have you been in touch about the side effects? Just wondering what advice they give for what to expect afterwards and what is ok and what isn't? Did you plan in advance to be off work or just wait to see how you felt afterwards?
Hope you start to feel better soon Rose. Xx

Sue - I see Dr Lovey at Warrington too! And I will be going to Halton for the infusions. Strange to think we could have spent hours on Mondays sitting next to each other in a crowded clinic and not known!! Thankyou for the offer of advice. I'm sure I will have lots of questions to ask when they occur to me!

Really appreciate having first hand experience from people who have gone through this already. Xx Ailsa

Hi Ailsa

I think you would be wise to take time off from work even if you are feeling okay. The reduction of the B cells over the two infusions will leave you prone to picking up infections which in the early stages may be difficult to shift. I was advised to try and avoid incidences of too many people for the first month or so to give my body chance to adjust to its lowered resistance. Whilst I am a bit 'naughty' at times (I will say it before someone else does!) I have actually followed this advice as it makes so much sense!

As others have said, there comes a time when your health comes first and fighting guilt and anxieties doesn't help the cause! Unlike Sue, I haven't zonked out at all but this does seem to be a common effect, not surprisingly really as it wipes out your immune system. We are all different and respond in different ways so really there's no way of knowing how you will fare, but being prepared for the worse case scenario may be the best way forward. Anything else and it will be a bonus!

Feel free to fire away any questions. Will it be early December for your first infusion?

Lyn x

Hi Ailsa,
I found the process to getting my 1st infusion not too drawn out. I saw pauline rh nurse 26th sep she advised me to take my cimzia injection the following friday. We both had agreed that the treatment was probably failing. I then had to ring her the monday and tell her how I was. Monday I was still in quite a bit of pain swollen hands etc. so she then put wheels in motion, saying it had to be at least 4 weeks for the cimzia to get out of my system. Halton hospital rang 2 days after speaking to Pauline on the monday to say they could start first infusion 7th nov and 2nd 21st nov. so thats where i am now 1 down 2nd to come.
So glad you have made the decision to take the time off.
sue v xx

Hi Ailsa

Good to know that you have got your dates and they aren't too far off! Glad you have decided to take the time off, as you say, one thing less to worry about!

I am sure there must be dozens of questions popping up, I know I had a fair few. As regards going to the loo that's not a problem. They simply stop the infusion and put a cap on the canula. It's then restarted on your return. I wasn't allowed to have anyone with me, infection control, but I took a book, sudoku and my netbook so I didn't get bored. Other hospitals might have a different policy so might be worth checking. A friend popped in to see me as she lives nearby but was only allowed 5 minutes. Obs are done every 30 minutes so I suppose it makes it more difficult for staff if patients all have someone with them. I was on my own the first time but next week I think there might be a couple of other patients in at the same time. I wore jeans and a short sleeve T-shirt; they need to be able to access your arms easily for the canula. As you're sat around for 7/8 hours do wear something comfortable and perhaps something you can put round your shoulders if you start to feel chilly. They thought it was hilarious because I took my slippers!! Christmas might be difficult, depends how you are really and that for now is an unknown quantity. You will probably have a better idea about your likely reaction after the first infusion.

My second one is on the 17th, Thursday, so I've got bloods on Tuesday and then I have to phone the hospital Wednesday morning to confirm that I haven't got any infection. They will then order the Rituximab.

It seems, from what I can gather, that the whole process follows a set routine.

1. Arrive, have BP and temperature taken.
2. Given 2 paracetamol tablets
3. Canula put in.
4. Given a bolus of anti-histamine through canula
5. Given an infusion of methyl-prednisolone followed by saline
6. Infusion of Rituximab started.
7. Rate of infusion is increased every 30 minutes after satisfactory obs.
8. At the end I had to stay for 45 minutes for further obs.

Check whether you will be given lunch. I took my own and plenty of drinks!

Any more questions just ask!

Lyn x

Hello Ailsa

The same as Sue my infusion day was the same and yes I was unplugged and the drip and stand accompanied
me to the loo. I was there from 9 am and left 4.30 it is a long day but I also drifted off when on the bed in
the afternoon.

Good luck x


Sue

Are you feeling any better ie are the symptoms of RA subsiding ?


x

hi Ailsa,

wanted to wish you good luck on the Rituximab and let's hope this is the one for you,

i hope you have more confidence with the replies of those on it,

never easy starting a new drug is it.

Suzanne x

Hi I have my 2nd infusion on monday 21st. not feeling too bad about it as I know what to expect. I have been feeling ok apart from usual tiredness. the swelling not too bad in my hands. I was wondering if the steroid infusion that you have before the start of rituximab might have something to do with this. I remember nurse saying something about steroid and piraton to help against any allergic reactions but would the steroid help in same way like when you have injection?
It is so good being able to share our experiences isn't it.
all the best
sue v