Tocilizumab

[8080]

Has anyone experienced infusions of this drug ( Actemra ) ? I don't believe I've seen it mentioned here.

Have a wonderful Easter weekend everyone!

Chris

[premierscfc]

Morning 8080, I'm still on the Toci as an injection, but prior to that I was on it as an infusion for almost 3 years and it is given over a 1 hour infusion (4 weekly) with initially an extra hour wait with the dose being worked out by your weight which is checked at each visit :(.

I changed to injections about 11 months ago and they worked well till the new year, unfortunately I've been flaring since.

Hopefully I will be put back on infusion when I see my consultant on Wednesday.

Hope this helps...

[davannh]

I have been on this since January 2010. I used to have monthly infusions in hospital but for the last 18 months I have had weekly injections at home. It has been a very good drug for me. It has kept the RA under control, however, because of previous disease damage I still have painful joints. I no longer have new joint activity or the other effects of the disease (e.g. anaemia) However weight gain has been an enormous problem for me, two stone over the last seven years. A side effect I have had to come to terms with.

[sarah2110]

I have just had my 42nd tocilizumab I fusion. Every month I go to hospital I am a chicken when it comes to needles so I can't self inject despite my rhemuy nurses encouraging me to do so. The arthritis research society have a very useful leaflet about tocilizumab on their website to download or you can get from your rheumy nurse.

My bloods have normalised so it's working still for me. I have a number of side effects after the drug but that seems to be just me and not others that have the drug at my hospital. I have sickness, diarrhoea, headaches a bit like methotrexate ( if you've ever taken that). But you get used to it and my hospital are very accommodating so I have the I infusion on a Friday so I can rest and not affect my work. If yoh need more info let me know

Sarah

[8080 in reply to sarah2110]

Thank you so much, Sarah!

[LesBev]

Hi Chris

I changed from self injecting this drug to infusions 3 months ago. It is sometimes the case that infusions work better for Sero negative people than self injecting. So far I do feel a bit better but still need constant pain relief. The idea is to add methotrexate and hope this combo is effective. I have had no side effects at all and the infusion itself is painless. Allow a couple of hours at the hospital tho! Good luck and a Happy Easter to you too. Lesley

[Lynnels]

Hi! I have seronegative RA and have been on Toci as a monthly IV Infusion for coming up to 3 years now as nothing else orally or sc injections worked over a period of 4 years of trying. It's been wonderful (for the RA) for me. All my blood inflammation markers have come back into normal ranges and my consultant says my RA is in remission. However I have been left with numerous problems that seem can't be dealt with despite varying treatments. i.e. Bilateral trochanteric bursitis, plantar fasciitis, dreadful muscle pain (possibly Fibromyalgia) and dreadfully painful and stiff knees (which goes for about a month after having steroid injections to both my hip bursitis' so has to be related to that) So toci doesn't work on anything other than the RA As mentioned before by Davannh I think weight gain is an issue. Having been on steroids for 4 years I put on over 4 stone and now I am off them, and despite eating the healthiest of diets, I cannot lose that weight. But sometimes you have to juggle your self esteem with your health Despite hating the weight I am now of steroids and walking with no RA pain.

I have not particularly had any other side effects After the first few infusions I felt very tired for the rest of the day but I think your body gets used to it as now I come out of hospital and continue as normal

If you want any further info please ask

Good luck!

[Biofreak in reply to Lynnels]

Hi everyone. It's interesting Lynnels appears to be having the same problems as me with tocilizumab. I've been having weekly injections for 9 weeks now and although my bloods look as if i am in remission they are at complete odds with the way i feel. All my muscles are killing me. My knees and ankles are really painful but not swollen. My neck and shoulders ache all the time and i feel tired all the time. The thing that upsets me most is that i didn't have these problems before starting the tocilizumab only in my hands, wrists and feet. I was on Etanercept before which was great for 5 years until it stopped working as well. I want to give it a chance to work but not looking hopeful at the moment. Yet it seems great for some people. Good luck !

[Lynnels in reply to Biofreak]

Well I've just had my hip bursitis' injected again last Friday and once again I'm like a new woman. Moving better and in less pain. The bursitis' are still painful but the inhibiting surrounding inflamation has eased. As I can now move my hips well(ish) the strain has gone off my knees , so they are no longer stiff and painful on getting up. So it does seem the pain and tiredness is coming from osteo type pain (and restricted movement) the RA (or toci) has left me with. I know I'll be good (ish) for 4-6 weeks then I'll start to deteriorate until I reach the 3 months, when I'm crawling the floor, when they are willing to inject again. Be good to know if others are having the same as us Biofreak and how they're managing

Take care

[Biofreak in reply to Lynnels]

Hi Lynnels. Glad to hear your injection for the bursitis' has eased things a bit. It sounds terrible. Fortunately for me I haven't got bursitis (not yet at least) but I have all the other things you mention. I'm on my 14th Tocilizumab injection now and I must admit the inflammation in my wrists and hands is under control as a result. However I still have really bad neck pain which extends down each side and round the base of my head and up the back of my head. Also the muscle pains in arms and legs. Also feel disorientated a lot. Rheumy nurse thinks i may have developed Fibromyalgia but will have to wait till i see the doctor.

The thing is I only started with these muscle pains and neck problems after starting the tocilizumab. Were you already having the problems with the bursitis and muscle pain etc before starting tocilizumab?

I feel like a moaning old croc but my bloods look wonderful!

Take care and best wishes to you.

[Nitrobunny]

Hi! I've been on Actemra infusions for 8 months now and my inflammation markers have all dropped back into normal range. I feel particularly well the first two weeks after the infusion but I'm usually flaring the days prior to the next infusion. I developed allergies to MTX so the combination is a nonstarter for me but all in all it's the best treatment I've experienced and it has improved my quality of life. I still wake stiff and sore and still experience joint pain but it's definitely an improvement.

[beeckey]

Hi Chris I have been on it for over 5 years first infusions and now injections.It has been the best drug that i have been on even tho i still have lots of problems and has stopped working as well as it did at the start also the weight gain as others have said but i am not sure on average how many people have had a problem with weight gain it would be interesting to hear how many have because i know everyone does not.I hope you do well on it

[CloudTreeDrive13]

Yes, i was on a drugs trial of toc for 5 years but as usual i stop getting the benefit and it no longer has any affect. At the time it was really good. It's like anything though you need to try these things for yourself. I wish you luck with whatever you take xxxx

[8080]

WOW! Thank you all so much for the valuable information and sharing your experiences with me! Looking forward to the infusion now, but terrified of the weight gain! Thanks again my friends😙

[Tarawoman-23]

Yes iv been on infusions of Tocilzumab for two years s for PSA/AS it has helped me a lot.

[beeckey]

Sorry did not mean to frighten you with the weight gain comment it does not happen to everyone so hopefully you will be fine.