Anyone still working full time and on toczilibumab (roactemra?)

My rheumy wants me to start this new drug in June following bad reaction to rituximab in December. I'm worried how i can fit this in as it is a monthly infusion. Does it take as long to infuse as ritux? And do you need the same antihistamines and steroids with the infusion?

I am finding it really tough at work, feeling very pressured and not got the same strength and energy i once had. On the one hand i can see that the new drug might help, but i also worry that it might mean even more absence. I was told after having 2 weeks off in Feb that i would have to be on attendance review if it doesnt improve.

Just feeling generally low. My mum died ( on her87th birthday) and the funeral is on Tuesday. Theres only me to arrange it all and i miss her so much. Xx

9 Replies

  • Hi Beaches3, I am so sorry to hear about your troubles. You must still be in shock from the death of your mother and I hope that the funeral a not too harrowing for you. I am in the same position (just me no other family) and had to do my mothers funeral too. It's horrible. I am also in the same position as you re Rituximab not working and moving on to tocilizumab. Tocilizumab is much much quicker. Last time I went in at 11.45 and was out by 2.30. So it is not nearly as disruptive to your life and work. You don't have the steroid and antihistamine either.

    Good luck with Tuesday and I hope you start to feel better soon.


  • Oh ladies, I feel for you both. I just lost my lovely aunt and it was hard enough without having to arrange the funeral and have RA too. I hope beaches your new infusions are amazing and I have read some brilliant research on how good Roacterma is. So fingers crossed. I do hope you have lots of friends around you to help and that Tuesday is as nice as it can be xxxx

  • My heart felt thoughts to you for your loss, not easy I know as I too have lost my dear mum, also on her birthday when she was just 68, so hard. To cope with this and then with the difficulties at work and the decision of a new medication too...

    I am in the process of making the decision about the same medication, having tried 2 previous anti TNF's which have failed, and like you the thought of the monthly infusions whilst working full-time. I am fortunate in that where I work are very supportive, but..., it is a big ask of my colleagues to accept that I will be going off to the hospital monthly, and for me the hospital is a good 45 minute (each way) drive from where I work. Even though Tilstongal states the time is shorter for the infusion it is still 2 and three quarter hours without travelling, and for me with another hour and half travelling.

    The research does look positive, and the other news is that I have been told they are hoping to be able to offer the it in injection form in the not too distant future - no date given as yet, but there is hope, so maybe hold on to that.

    I am still having to consider if I want to try it, or whether I am going to stick out a while longer, just gone through a really rotten time and only been back at work since January having had 3 months off. Have got chronic migraine, which looks like is being bought on by the RA as my strain of it is affecting lungs, eyes etc as well as joints, oh joy!! still at least the drugs I have for the migraines are at last working, thank fully...

    I do hope things go as well as they can on Tuesday and you have good support then, and also support and someone to talk to about other choices you make.

    Nuttynanna x

  • I am so sorry to hear about your mum xx

  • I'm So sorry to hear about your Mum. I lost my brother in November of last year & had to arrange everything also. So I really feel for you. I've not been good since & also start Roactemra next month. I must be honest I am worried about the side affects etc!

    Try to think of the funeral as a celebration of your Mum's life.

    Take Care xx

  • You should be allowed to take time off work for medical treatment (infusions). If work is giving any problems, then try and get someone to advocate for you, on the basis that it is an allowable accommodation under the disability and work legislation. Ask the CAB disability welfare officer what your rights are here, and whether they can suggest who could advocate for you. Don't let them bully you with attendance reviews either, unless they are going to use those to offer you more flexible working and other support.

  • Hello Beaches3 (and everyone else!)

    I've been on RoActemra for around six years now - I was one of the original people on the trials and I have been on just about everything for RA in the past. This is a very good drug which turned me from a little crouched arthritic back into a relatively normal looking 35 year old.

    You do get used to going to have the drug once a month and I would say I would be at the hospital for about one and a half hours whilst having the infusion, once a month.

    The hospital does my bloods at the same time, which is augmented by independent bloods around once every three months. When you are prescribed Ro Actemra you are also prescribed methotrexate and this you either have to take orally or have by (self) injection once a month.

    My body rejected the methotrexate tablets spectacularly and in the past few months I have found it very difficult to continue to inject myself. When I've complied with the methotrexate injections I have found Actemra to be an excellent drug which has allowed me to work relatively normally. However Actemra/Methotrexate do not get rid of all the pain, and I have times when I am OK-ish and other times when I am just plain worn out and ill - it has, however, allowed me to continue to participate with the running and ongoing progress of my own business, but in no way would I say I would be able to hold down a 'normal' job.

    This is an excellent drug and I've had relatively few side effects but there are a few I would remark upon - I never had migraine until I started with this drug, and I do now, frequently. My BP is now high and needs to be controlled with drugs.

    Also I've put on a weight whilst on the drug - whether this is the drug or whether it is because I've felt better and actually started eating, who knows, but maybe that is one and the same. It's easy to go to hospital and allow someone to administer a drug but difficult to go home and inject a drug which is basically a poison (methotrexate) once a week. I was also having problems with my hair thinning and falling out with methotrexate, which I am happy to say has reversed since I stopped injecting it.

    I still feel tired, worn out and exhausted and I sleep a lot. The pain is worse at night. Only, its not as bad as it was six years ago - sad thing is, your brain doesn't really acknowledge that - pain is pain after all. All I can say is that before Actemra, I couldn't dress myself, get in and out of the bath, and I walked bent right over with a cane. I can do all of those things and more - including yoga, pilates and riding and caring for my horse, though I suffer the consequences afterwards when I do!

    Overall, if you've had little success with other drugs, this one is certainly worth trying and you will probably see rapid improvement - I saw a change within a month and that just got better and better until I reached a peak where it just levelled out, and I am better but no where near 'cured' or at 'normal' levels. If you can adjust your expectations to this - this may be a good drug for you.

    As for you having to take time off work, trust me, I used to be a HR Officer with a large international company before and just as I got RA, and any reasonable company should assist you with something that will allow you to feel better during the hours you are at work. Legally, they must make 'reasonable adjustments' for anyone who is chronically disabled; what is 'reasonable' is open to interpretation, both yours and your employers.

    If your health condition is likely to, or has, lasted a year or longer, you are disabled. As far as I am aware, all RA patients contract the disease which lasts then for the duration of their lives - we don't get over this condition. You don't have to wear the title 'disabled' as a badge on your arm, but do remember that special consideration will apply to you when you approach your HR people; please don't feel bad about using that title if you need something to make your life easier - anyone with a chronic health condition should get extra consideration, in my opinion. If in doubt, you can speak to the CAB or a solicitor for a nominal fee regarding your rights, or even your union, if you are in one - you can also speak to your Rheumatology team who will have their own take and information on how you can best deal with your employers.

    I really really hope this drug helps you. I feel terrible for you that you are having to deal with this and the loss of your Mum, which is the worst thing in the world. I send good thoughts and love your way. Please remember you will be feeling physically a lot worse because you are going through a lot of mental anguish - I lost someone close to me at Christmas and have suffered physically (and mentally) for it ever since.

    You need to give yourself a mental break now and again and do something lovely for yourself, even if that is just lying in the bath surrounded by candles with a glass of wine. I know in my heart that every person we lose would not want us to be in such terrible pain over their loss, but we can't help it. Allow your Mum to help you one more time by taking care of yourself a little bit.

  • Thankyou for such lovely messages and advice. I really appreciate your taking time to post your replies.

    I do need to find out my rights. As a teacher it poses different problems with being off - i cant just go in and have an easy day, or leave work till i get back. Someone has to cover my classes if im absent.

    Thanks again for all your kind messages xx

  • Hello Beaches3

    Ive been on Tocilliumba for just over a year now.I started november 2011,But i have Stills disease which is a form of juvenile rheumatoid arthritis which ive had for 8yrs.Im normally in hospital for around 2-3hrs then need to come home to rest.I have not really felt any better for having the drug,But within 1 months treatment my CRP/ESR dramatically changed from CRP 60-2 ESR 106-2 and this is way its stayed give or take 2-3.Im still on methotrexate and steroids plus many more,but i do hope one day to just have to take a few tablets.Im more then happy to take anything which may help,as they say we dont know till we try and we are all so different.I wish you well and if you would like to know anymore just message me.

    Best wishes

    Elaine x

    Im 42yrs this year.

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