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Autoimmune disease

Rheumatoid Arthritis - any experience of Etanercept?

14 replies

squashyhat · 03/10/2023 17:47

I have been on Methotrexate for many years which has successfully managed my RA. However my rheumatologist thinks the potential for liver damage is now too great and wants me to replace it with Etanercept. Can anyone share their experiences? How do you find doing the injections? Is it effective for you in managing flare-ups? Have you experienced side effects? TIA.

OP posts:
Craftysue · 03/10/2023 18:02

Hi I started adalimumab 3 months ago - another TNF drug
Same reason as you - on methotrexate for years but it was affecting my liver. I've not had any problems with side effects but I find the injections more painful than methotrexate -remember to take them out of the fridge a couple of hours before. I would say I feel about the same as on methotrexate - no miracle but I've been told it can take up to 6 months for full benefits to be felt. My liver tests are now normal - you will need to have regular blood tests for a couple of months.
Good luck -hope it goes well for you 🤞

squashyhat · 03/10/2023 18:12

Thanks @Craftysue . I took Methotrexate in tablet form so it's going to be quite a change for me.

OP posts:
Craftysue · 03/10/2023 18:22

You'll be fine - I never dreamt I would be able to inject myself but it's fine - just get your rhuematology nurse to show you how. I found it easier in my thighs than my stomach but you will find where's best for you

Trampauline · 05/10/2023 19:32

Hi, I've been on Etanercept since 2009, after I had been on methotrexate for 9 months and it wasn't helping. Etanercept works brilliantly for me, so well that I only need to inject fortnightly. It's a pen injection so I just hold it on my thigh and press the button. Yes, I leave it out of the fridge first, sometimes up to an hour if cold weather. It can hurt but pain doesn't last long. I've had no side effects

woodysadventures · 05/10/2023 19:40

I've been on it since 2016 and it's been great. It really works for me, so much so I have now gone from a weekly injection to one every 10 days.
Injections are absolutely fine.

woodysadventures · 05/10/2023 19:42

I've had literally zero side effects. My RA is under control, I exercise daily, do everything as normal.

NeverDropYourMooncup · 05/10/2023 19:47

I inject Cosentyx and Enbrel looks very, very similar.

You get autoinjector pens. Take it out of the fridge at least 30 mins before you do it, sit or lie down, find a spot on your stomach, hip or thigh that's free of varicose veins/visible veins and stretchmarks, check through the window that it looks clear, take the cap off, press firmly and hold. It'll click as you do it, then after a short pause, it clicks again, you lift off after the click and chuck it in the sharps bin.

It stings a bit sometimes, but not for long (it's about five seconds or so from click to click.


I did find injecting MTX and Humira were easier, as they were a smaller volume dose and finer gauge needle (and I actually preferred the old days when I had a prefilled syringe instead, as I had the knack of doing that down to a T), but it's OK - and the improvements are amazing.

My other recommendations are over a muscle is less stingy than a fatter, softer bit, dedicate a particular section of your fridge to them and if you're dealing with Sciensus, the app is shit but the staff are lovely.

squashyhat · 05/10/2023 20:24

Thank you all so much. I'm not too worried about administering the injections but it's good to hear such positive experiences. One more question if I may - how do you manage holidays? Particularly abroad with issues like transporting the drug and storage?

OP posts:
NeverDropYourMooncup · 05/10/2023 21:23

It lasts up to 14 days at room temperature (up to 25 Celsius, IIRC). Add in a chilled medication pouch (the sort that's used for insulin) and a letter from the hospital/GP to carry them in your hand luggage with a travel sharps bin and I don't see it being a problem.

The hospital will be able to give you more specific instructions, though.

I've remembered a couple of other things;

You might need to take a loading dose, which is having more injections than usual for a short time to get the levels up quickly - I think it's also a bit of a desensitisation to doing the injections as you get used to the process within a few weeks,

And before you start it, you'll have a few tests - chest x-ray, one for TB if you don't have a BCG vaccination and some more blood tests to include HIV and Hepatitis (I think), as taking biologics can activate dormant infections. I think there was a chickenpox immunity as well - if you come into contact with chickenpox, the procedure is to call your GP for an urgent prescription of antivirals (which are fine, they don't taste bad or have any side effects in my experience).

You definitely can't go places that require live vaccines like Yellow Fever and if you were harbouring dreams of becoming a bat conservation volunteer, you can't, as that requires Lassavirus/Rabies vaccinations (that was an interesting question for the doctor - 'Why would you want to handle bats?').

And look after your feet. Treat them as though you are diabetic, wearing footwear all the time instead of risking cuts, glass or other things in the kitchen, making sure you don't get blisters or ingrowing toenails, much as you might have been told to do with MTX.


It's likely you'll develop the ability to not flinch at multiple vaccinations and be able to tell the phlebotomist before they start exactly what vein to use and how to get it nice and plump for blood tests - 'Uh, not that one, use this one (gentle stroke along the vein as it pops up).'



It sounds a massive thing beforehand, but it's 99% insignificant with a few minutes a month just getting on with it and 1% of you starting conversations with 'I'm on Biologics for...' as that focuses attention for all infections, illnesses and GP appointments often become available when there weren't any beforehand (if you don't already experience this with MTX).

I'd probably ask for a steroid pulse to get you started, as coming off MTX can mean a flare before your biologic blood levels get up.

I've not been noticeably susceptible to infection since starting, but your mileage may vary. I think biologics are great, though. Because when you get the right one, it really, really works.

woodysadventures · 05/10/2023 21:50

squashyhat · 05/10/2023 20:24

Thank you all so much. I'm not too worried about administering the injections but it's good to hear such positive experiences. One more question if I may - how do you manage holidays? Particularly abroad with issues like transporting the drug and storage?

I use an insulated bag to transport it (put in the fridge at the destination) and carry a letter from my healthcare provider. Never had a problem.

fifteenfifty · 07/11/2023 18:20

woodysadventures · 05/10/2023 19:42

I've had literally zero side effects. My RA is under control, I exercise daily, do everything as normal.

Oh this fills me with hope. I'm about to start it. Thank you for posting.

squashyhat · 20/11/2023 11:32

squashyhat · 03/10/2023 17:47

I have been on Methotrexate for many years which has successfully managed my RA. However my rheumatologist thinks the potential for liver damage is now too great and wants me to replace it with Etanercept. Can anyone share their experiences? How do you find doing the injections? Is it effective for you in managing flare-ups? Have you experienced side effects? TIA.

I am the OP (see above) and thought I would come back to this thread and update. I'm on my 3rd weekly injection of Benepali and am doing really well. There was a gap between stopping the Methotrexate and starting the new drug during which my symptoms really flared up, but even the first injection made a difference and it's continuing to improve. I'm back doing yoga and pilates and sleeping so much better.

The support from Sciensus (who provide the drug and arranged initial support visits from local nursing staff) has been good and I'm finding doing the actual injections a doddle.

So if anyone else's clinician suggests biologics as a management method for RA would say definitely go for it. And thanks to everyone who replied with your positive experiences Smile

OP posts:
Georgieporgie29 · 10/12/2023 08:39

@squashyhat so glad it’s working for you so quickly and you are able to start doing things again, long may it continue

Craftysue · 10/12/2023 18:27

That's really good news - I hope you continue to improve 🤞

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