Decisions about anti-tnf's

Hi all,

Had a hospital visit today; my RA still isn't under control (don't I know it!)

Metoject 20mls weekly, sulfasalazine 800mg/day isn't cutting it. I've not long come off yet another course of prednisolone and have been put on another month of it. It helps reduce some of the swelling but all of my joints are still very painful, all day every day.

I now have another appointment 11th November at a different hospital to discuss which anti-tnf would suit me. I had to have a blood test today to ensure I have antibodies to hep b and c and TB.

I don't know much about anti- tnf's and as such I feel inadequate to be having a discussion about which one to take!

I know you learned lot will know something about them: how often and how they are administered. What side-effects are possible etc.

H e l p!!

😕

Please 😆

26 Replies

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  • I've heard of people being asked which biologic they'd like. Personally I think this is taking patient choice a bit far. I have trouble deciding which Pizza to go for and yet my knowledge of pizza is far superior to my understanding of biologics.

    Having said that, both Enbrel and Humira have been around a long time which I suppose is a recommendation in itself. I believe both are usually taken at fortnightly intervals by subcutaneous injection (syringe or injector pen, that generally is a choice we have to make). Humira's been good for me, I have PsA but many with RA also seem to think it's a good 'un. I don't get side effects from Humira, unless you count feeling damn near normal a lot of the time as a side effect!

    I'm sure your rheumy will at least narrow the field based on his knowledge of your RA. Good luck Moomin8! I hope biologic therapy makes a wonderful difference to you. Oh and I believe that all the biologics(?) take a while to show what they can do, but the wait is often very worth it!

  • Thanks postle2 - so...are anti-tnf's biologics then?🤔

    I'm a libra and as such, if one believes in that mumbo jumbo, can't make a decision at the best of times! 😃

    Btw- I read your name as postie2 😆

  • Yes anti-tnf's are also referred to as biologics. I think there's a new breed of biologics that target different parts of the immune system and are not called anti-tnfs. I also know for sure that tnfs can be nasty little b*ggers when they're targeting our body instead of bugs or whatever they're meant to attack, but it's my body that tells me that, not so much my brain!

  • They are mainly either infusion or self-inject and different hospitals have their own protocol regarding which drugs they offer and in what order and what facilities are available to them. As with DMARD's there is no easy way to work out which will suit you best. Enbrel once weekly inject, Humira fortnightly inject, Abatacept weekly inject, Rituximab 2 cycles a fortnight apart then every 9+ months infusion, Tociluzimab was monthly infusion but believe it may be available on self inject. A couple of others I don't know much about Cimzia and Gobu (something). Self inject you usually need to be home for a day a month although some get them delivered to their nearest pharmacy or neighbour/family member. Infusion you are dependant on a place being available when you need it and travel to the hospital and either half day or day (Ritux) in the unit. I have had more luck with bios and much less side effects but still took some time to find the right one when Enbrel, my first, failed after 7 years. I have always had syringes but many use a pen and at one time you could choose which one you had - I think I would move once I pressed the button with a pen. Worth a look at the NRAS or arthritis research pages on meds. Farm

  • I use a pen with mtx: metoject and it's fine. I think I'd be less steady with a regular syringe

    Thanks for the info 🙂

  • NRAS have a useful booklet on biologics, here:

    nras.org.uk/publications/bi...

    It's a couple of years old now, but still relevant. Anyway there are a couple of different types of biologic drugs, and the anti-TNF group are the ones that are advised to try first. It also gives a table showing which ones are injected weekly, every other week, and monthly (it's unlikely you'd be offered infliximab first which is an infusion). But which one will work best for you is completely unknown, as ever it's trial & error. Good luck and hope they work brilliantly for you.

    (And I thought postle was postie too!)

  • Thanks- I've downloaded it to peruse ☺

  • Confused?! Well I am on Rituximab which is the infusion. I hate needles so prefer this. No side effects and had my first pair of infusions in June. I am told my RA is better controlled but still early days. I am experiencing horrid pain in my hands and wrists which is masking how well my RA is and I think this other pain is nerve damage. Tests coming up soon for this. Whatever you choose I hope very much it works well for you!

  • Thanks cathy777

    I hope you get some relief soon.

    I get a lot of pain in my wrists too. I wonder whether that will wain.

  • So...are anti-tnf's the same as tnf's?

    Only the lovely clinical nurse's first language wasn't English and she called them tnf's, I think. She wouldn't discuss anything until next time.

  • Lol! I did a lot of pondering over this one too. This is what I think is the case though if one bit is wrong it's all wrong, probably. TNF stands for tumour necrosis factor (do NOT panic about the 'tumour' bit). TNFs are one of the um, things that the immune system sends forth to target foreign invaders such as bacteria or bad bits such as tumours. So they probably play a role in preventing cancers from growing but also in helping a cat scratch from going septic. They cause inflammation which is actually a good thing as long as it doesn't go crazy.

    In our case inflammation has gone crazy, it's not needed to heal a cat scratch or whatever, our immune systems think our own joints are bad boys and tnfs are sent to joints and other places to sort out a problem that doesn't exist. Ta Da! Enter anti-tnfs! E.g Humira which grabs the tnfs, or quite a few of them, before they can cause inflammation.

    There are some wonderful computer generated images of anti-tnfs doing their thing. I will try to find a link.

  • This one's fun:

  • Hey!

    Anti tnf's are indeed biologics. I take Humira (which works a treat btw). The reason for giving me that was due to thinking I have Psoriatic Arthritis and that type of biologic is most effective give for that type of inflammatory arthritis.

    I would suggest that at your appointment you ask which biologic is best for your symptoms rather than taking a stab in the dark and choosing one.

    Do also search this website for the drug names which can be a useful exercise to see others experiences.

    I inject my medication once every two weeks. It's given me my life back!!

    Best of luck!!

    xx

  • Thanks- I'm pleased that Humira works for you☺Many I ask: you you use a pen-like injection or a classic - type syringe?

  • I use a pen injection so easy to use. I used to use metoject pens and I've taken Sulpha both of which did next to nothing for me just like you.

    Fingers crossed biologics change your life just like they have mine 😊

  • I think all the biologics (apart from infusions) are pens now.

  • Not learned but I have been taking biological for some time. Nothing has helped me so much. They do watch your bloods etc carefully which is good really. Some of the literature is a bit scary but I'm prepared to face those risks for the benefits

  • Hiya,

    What bilogic are you on.....

  • Rituximab. It helps but not enough so they're about to add lefluminab. I was on infliximab with methotrexate but had high liver readings so rheumy stopped both which wasn't a great idea. My new rheumy has been trying to get me back to where I was before.

  • Thanks for the reply,my consultant offered me cimzia,but I am really not sure if I should.the loading dose is two 200mg every fort night for 6 weeks along with methotrexate every week, have you heard of this bilogic...is lefluminab known as enberol.....

  • Don't know yet deanne123 as we haven't discussed it yet 😕That's why I was asking about other people's experience of biologics as I'll have to have formed an opinion! It's a dilemma

  • Hi

    I have been offered cimzia this an anti TNF injection, I am so un decided,

    What it is with RA is your body makes to much TNF protein so these anti TNF injections help by reducing inflammation,stiffness,pain.

  • So...will you have cimizia? May I ask: why was the decision made for that part one?

  • Hiya, really not sure what to do, I have all the information its sounds really brilliant but they say theirs only 15 years of data for this bilogic,can give you possibly skin cancer they just don't know, its a scary thought, my consultant offered me this because my RA is not under control I now have two weeks to make my mind up.

  • Remember that they monitor you carefully and if the biologic works it will prevent joint damage.

  • It's so difficult. ...are you seropositive?

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