Question about increasing tocilizumab (Actemra) dose schedule

[HanaleiBa]

Hi,

I've had RA 8 years and failed my first biologic, Enbrel. I went on Actemra and had great results. I feel good, but my VETRA test (US based) and now my ultra-sound results for my wrists show severe disease activity. So, it feels like I'm in remission, but I'm not.

I moved to the UK 8 months ago after amazing care in the US and am concerned about where I go next. The NHS system is a disaster for RA, and I'm wondering how I navigate needing to change medications.

I currently take tocilizumab (Actemra) once every 2 weeks. I'm 122 pounds (about 58kg). When I first moved here, the UK rheumatologist was shocked I only took the 162mg dose every other week. He said they do every week here, but that we would continue until I have issues.

I'm wondering if they'll have me move to every week before changing medications. Has anyone else had experience with this? My US rheumie would have moved me to a JAK inhibitor (called Xeljanz in the States) next. But, here the system seems much harder to move drugs with. I refuse to become disabled or have joint damage because the system won't help me!

Any advice on people in this situation either about increasing the dose schedule and the results of that, the next drug step after tocilizumab, and/or how to navigate the NHS where I can't even get access to my blood tests. The ultrasound I just did came from a private doctor clinic. Thanks! I'm scared.

[Allije]

Hi I have been on Tocilizumab for 4years. Started on weekly injections and then, due to continued improvement in health and test results, it was reduced to every 2weeks. Still doing well.

[HanaleiBa in reply to Allije]

Thank you so much for replying! I appreciate the feedback on your experience ;-).

[nesantos]

Hi

I've had RA for 26 years (I'm 47). 9 years ago, when I moved to the UK, I started on methotrexate injections which I didn't tolerate so I got put forward by my rheumatologist for a clinical trial involving the 162mg weekly injections of toccilizumab. It took a while to show improvement. I was on trial for about 18 months and continued the treatment afterwards. I've been on the weekly injections for over 3 years and my RA is so good that I don't need to take any other meds at all. I hope that you have an NHS rheumatologist who can prescribe you the injections on a weekly basis, it has worked wonders for me. Good luck.

[HanaleiBa in reply to nesantos]

Thank you so much - this is so helpful!! Actemra has been fabulous - I’ve been on it 18 months and it took about a year to really ramp up - and I feel good, but with the ultrasound showing high inflammation I’m worried. We all thought I was in remission But hopefully weekly injections will control it fully! I appreciate hearing others who are fine weekly.

[Pixkeeble]

I've been through a lot of treatments with my Rheumatoid. The system here is very different. If you want to know your blood results from your GP then you need to ask them for copies or register online for access to test results. Some GP practices do this, others don't, but you need to enquire at the GP office.

You have to wait over here for most things unless it's an emergency and even then things take time.

Most people take Toci weekly here, Humira is one injection every two weeks. I failed the injections of Toci so was put back on the infusions monthly. But even that didn't work as well as it should. I found you need to give proof os swelling and inflammation to the rheumy, I'm sero neg though and I need to give proof. I took photos of swollen joints, redness etc. My blood results have never been high either, but the pain and swelling still goes on. So my advice is to record all of your problems and take photo's to let him have copies!

I am now on Baricitinib, after the Toci basically only gave me 2 weeks of feeling OKish. But it does take time for the NHS to get going when changing meds. It can take weeks for it all to be sorted out. But if he says you need to up your dose to weekly then they will leave you on that for a while to see if that works.

The problem with Rheumatoid is it's so different for person to person and there isn't any way to compare to each other.

The NHS has a lot of waiting involved, but then you're not paying for it out of your own pocket, it's paid by everyone straight out of their wages and we don't have to pay anything else apart from our prescription charges and they are all the same for everyone.

I wish you well with your journey and I hope you get sorted out soon.

[HanaleiBa in reply to Pixkeeble]

Thank you for taking the time to share all of that both about the meds and the NHS. Such great info - I was confused about injections being weekly and worried I’d be over medicated. But if that’s normal, I’m glad to know!

I’m really grateful for the information you shared as I try to sort all this out :). I had amazing (free, covered by my employer as most coverage is in the US - it’s a common misconception that most people aren’t covered. We are. More need to be - but most are.) coverage in the US, so this is scary. Also a great Rheumie who personally saw me for an hour every 2 months - all covered by insurance for free (employer paid). I’ll keep fighting for my health here :). No way am I going to get deformed joints just because a system won’t respond to me. Ps. Good to know about the GP and blood tests. So weird they won’t share those - it’s my data! And not online....ugh.

[Hezekiah in reply to HanaleiBa]

Just thinking aloud, but I wonder if when you know that your doc or rheumatologist has your blood results in front of them, whether you could ask to photo them using your mobile phone....one way of dragging them into the 21st century perhaps. Or at least making your level of interest very clear. Don't suppose it will work (they'll probably use GDPR or Health and Safety to say it can't be done....though they will be mistaken, and just using it as a rubbish excuse). May be worth a try?

[rab1874]

Hi I take weekly Toczilumumb (actemra ) injections weekly and have been for a month now ,this is my 4 biological and also on 20mgs methotrexate so hoping this one works xxx

[HanaleiBa in reply to rab1874]

Thank you for sharing!

[Pixkeeble]

I know it's crazy they are so secretive about results. I must admit if I have them done at the hospital I have to wait for the rheumy's letter to the doctor to find that out, but the GP, if they are online for prescriptions and re ordering meds, can share all of your results of tests. I had to fill in another form and it had to be approved by one of the GP's at the practice. We just don't have the accessibility to GP's or consultants here. Does your rheumy have a helpline? you can ring that if you are worried about a treatment or doses etc. You can also contact them if you are in a bad flare and you need help with it.

Hope all of this helps you, you always have to be proactive and know as much as you can about the rheumatoid treatments and your treatments in particular. Normally GP's are not as clued up on the latest treatments for rheumatoid.

All the best,

Jakki

[Kerensa21 in reply to Pixkeeble]

That’s a great reply & I don’t understand the secrecy either? It took me ages to get copies of rheumatology letters to GP & I ask to be copied in every time now just in case (mistakes can & do happen). Also it’s my body & my data, no criticism implied but it makes you feel like you have no control or involvement. I think they forget it may be 6 months between appointments & any feedback for you.

My GPS have online access to tests & patient records if you register: systmonline here, however this doesn’t include blood tests done at hospital only ones instigated by GP (although GPs can access these on computer if you ask when you visit).

On the plus side rheumatology in my area keep saying they are instigating patient access to blood tests online but hasn’t happened yet. It all desperately needs to be more joined up, you’re right 🙂