Biologic Medication

[LS1957]

I have had written confirmation today that I have been accepted for Biologic meds - good news but also quite frightening. they have suggested Tocilizumab but have also given me a choice of another two meds . Does anybody have any experience or comments pls - I still work full time so I need the least disruption x thank you x

[farm123]

Tocilizumab is an infusion which takes around 4 hours in hospital once a month. I am sure that I have heard it is being introduced as a self inject but not sure how far along that is to being rolled out everywhere. I like self injection as you can do it to suit yourself (some take in the evening to avoid the worse side effect others am) although you do have to factor in delivery day, usually once a month and most have to be kept refridgerated. Some have it delivered to a friend, neighbour, family, workplace or GP. Farm

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Which other ones have you been offered?

[supernan]

Hi. I have been on infliximab for three years. I have not suffered any side effects at all. Initially, my infusion took two hours in hospital and you are closely monitored ( blood pressure, pulse, temp taken every 15 mins) my infusion is now given to me over an hour every 6 weeks. I fully endorse this medication. I have been very well on it. Hope this helps x

[sarah2110]

I was offered 3 drugs like yourself including tocilizumab, enbrel and another i cant remember after being on methotrexate and hydroxychloroquine which made no difference at all. I chose tocilizumab because i am chicken with self injections and needed to have a nurse administer! Both the others were self injection routes that were being offered. However tocilizumab as farm123 said is being offered by self injection (in my area -Hertfordshire ) and i know it is slowly being rolled out in other areas . When you look at most of the biologics , and i recommend reading the arthritis society leaflets on each one,they all have similar side effects, they all are administered in similar form. Whilst self injection is on your terms so can fit round work like you said you work it wasnt an option for me as i said i am chicken! i am a teacher in a primary school and i have arranged my infusions to be on a friday afternoon so i leave at lunchtime and my work is covered for the afternoon and it works out not that disruptive. And any side effects happen in your time at the weekend! Once you have been for your first infusion you can fit it round your work and what you do like holidays. The tocilizumab infusion actually only lasts around an hour but you have to factor in getting canulated , wait for at least an hour after blood pressure checks for side effects and that there are others on the ward! So you are there for at least 3 hours. I personally have suffered from some side effects like headaches, sickness after the infusion but having taken methotrexate this is nothing! I have been on tocilizumab for 18 months for the last year my esr has normalised, in the last 6 months i am in little to no pain, my das is now down to 1.6ish so i think tocilizumab is great! I wish you good luck in whichever route you choose and i hope your disease gets knocked in to touch like mine did as soon as possible for you. Best wishes x

[lesleyf]

I am in hospital now they have just given me retuximab last night and up to now this morning I can walk pretty good for me before ibcame in a week ago I had to have two people to help me just stand up I have been on a steroid drip evey other day for a week to help with the swelling and pain it did help dwelling and pain but yesterday I had first retuximb drip but did not expect to feel anything at all yet buy today I do seem to be moving better hope it carry s on I had lost 4stone before I came on hospital because could mot get much food at home not even microwave food I could not open the packets so think I had just given up trying but I have now put on 5 pound I am so pleased asni say it seems better today hope it keep like this I am going home today so will know better when I get home but up to now it seem to of helped me just hope it keep going like this I will be able to have a bit of life instead of sat looking out the window all day I can do things for myself would be great lol hope this hase helped I will take all the help they offer me mow I no it only me I can rely on will keep u informermed

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What many people find helpful when making these decisions is to actually talk to someone else who has been on these meds. If you would like to do that just call the NRAS helpline 0800 298 7650 and they can make arrangements to match you with one or two of our telephone support volunteers who can call you at a mutually convenient time to answer some of your questions about what impact being on certain therapies has meant for them.

NRAS here to help every step of the way

[freckle71]

Hi there, I have been using Cimzia since last July 2014 I self inject once a fortnight. I am a single mum with 2 school age children and I work fulltime. I also self inject MTX once a week.

Before I started I was terrified of needles and the fear of having to do them myself was overwhelming. But when I look at the quality of life it's given me back it is so worth it. I fit it in to suit myself- evenings before bed and it doesn't interfere with my life. They are delivered to my local pharmacy and I collect them from there.

Good luck with it. X

[Ozzy]

I have been on two biologics, at present I am on tocilizumab by infusion but I am waiting to go over to injections which the biologics nurse told me they want to change as many people who can to self inject. I used to self inject before with Hurmia, whilst not a pleasant thing to do, it's over and done with in 5 mins, whereas the infusions are just over an hour long but the journey to hospital plus waiting around to be weighted etc takes me most of the day. No side effects from tocilizumab, only a headache after infusion, but drinking water before, during and that evening seems to stop that. My CRP and ESR blood tests are now very low, so hardly any swelling at all

[Luv2shoppp]

I've been on Enbrel since Sept 2014. No complaints and I feel normal. I was taking Celebrex daily too but I've since been taken off that and only inject myself once a week. I never thought this would be possible but this one is definitely a winner in my book. Good look with what you end up using.

[hawker955]

Many of us are on biological and they are the gold standard for treatment. A fortnightly self-injection is a very small price to pay for the effectiveness. My symptoms were 90% better within two weeks of my first Humira. It proved my silver bullet but one does have to be very careful of infections: coughs/colds/nasties from unpasteurised cheeses, unwashed salads and the like. HTH.

[francherry]

Hello, I was also worried about starting on a biologic drug. Although the first one I tried didn't suit me (Humira), I have been on Enbrel for a year and it has been the best drug I've tried so far (after 3 DMARDs and 1 other biologic). I was initially worried about injecting but my nurse took me through it and even administered the injections for me to begin with. Gradually I built up confidence and was able to self-inject which I now do twice a week (other people inject Enbrel once a week). It has started to stabilise the erosions in my wrists and my swelling and stiffness has decreased. I also take anti-histamine tablets the day before, on the day and the day after my injections to prevent side effects (as I'm sensitive to medication). Good luck.

[ragdoll1_]

Hi

my husband has been on a Biologic drug since for the past 6 months, cimizia - we are aware it weakness his immune system but it is working for him. His joints are now fine no pain or welling. He is able to withdraw off of of steroids & is on a low dose which he couldn't do on the DMARD's tablets. It's a balance of the long term possible side effects of a biologic drug or suffer but we think its about quality of life. He is a decorator & works every day so life must go on & only 49 but are not sure of long term affects. he would be unhappy if he couldn't work so feel the balance is ok.

[ragdoll1_]

I meant to say this regime of fortnightly injection not disruptive, he doesn't want to do his his injection himself so i give to him kindly if he has been good! He carries on with his life & works daily. He does still get tired at times but has a manual job - the family jolly him along as we believe it to be better for him to work & get up & do something which he still manages

Hope this helps in your decision

[MissMc]

I inject Etanercept (Enbrel) via a pre-filled pen and I have absolutely zero side-effects. It burn as the liquid goes in but this is temporary. I also inject methotrexate.