Advice about starting Etanercept

[Foodman500]

Hi,

Hoping you are all safe and well.

I am going to be starting Etanercept in January, can anyone offer any advice or would could give me some insight into how its worked for you?

many thanks

Amy

[Ms-D]

Hi there. I was on benepali a biosimilar and it was great for 9 weeks but then pain crept in. I was on it for 24 weeks. It's different for everyone but me and biologics don't like each other. Lol. Take it out of fridge beforehand as stings little less. I am sure you will be okay xx keep me posted x

[Hidden]

I started this last January within 2 weeks I was skipping but it didn’t last as it didn’t suit me but so many on here it has been a life changer. We are all so different this just could be the one for you 🤞🏻

[Marionfromhappydays]

I am starting this (well benepali) in January too so fingers crossed for us both x

[rab1874]

Been on it for over a year now it’s been the best drug for me so far ,I was on methotrexate 15 mgs with it but had to come off that as liver functions were high,so on that alone now and I’m ticking along except I’ve a chest infection at the moment,but other wise ok,good luckxxx

[HevJ in reply to rab1874]

Hi Rab - like you they have taken me off methotrexate for the last year. Are they planning on leaving you just using it alone? My rheumy is concerned as he says the powers above could come down on them as it’s meant to be used in conjunction with another DMARD to extend its effect (?)... personally I am quite happy not having MTX...

[rab1874 in reply to HevJ]

Same with me,I had an appointment at the joint clinic a month ago and they didn’t even have it down I was off it,they never mentioned anything about going on something else but wouldn’t go back on it

[Hidden]

I've been on it for almost 11 months. It's changed my life! I'm pain free, haven't had any flares and the joint deterioration has stopped. Zero side effects as well. I feel like I have my life back!I hope it works as well for you as it has for me.

[RAexperiences]

Hi AmyI’ve been on it for about 3 months now. Can’t say I’m noticing much in terms of pain improvement, to date, but perhaps it’s a bit early yet. I actually find the auto injector very difficult to use and as my rheumatologist aptly described “a bit aggressive”. No matter what i try i have trouble getting it to actually shoot so to speak. I may try the pre-loaded syringes instead. Burned like the dickens at first but that has improved. I am noticing considerable hair loss but other than that no other side effects. Fewest side effects of any med I’ve been on which I find refreshing. Lots of people on this blog have done really well on it.

Best wishes!

[Rach420]

Hi! I have been on it for coming up to 3 years and it has changed my life. I did experience hair loss within the first 6 months of starting it however after discussing with doctor I now take iron tablets alsoGood luck!

[RAexperiences in reply to Rach420]

Thanks for the tip on that

[Hidden]

Changed my life. No side effects. Good luck x

[helenlw7]

I’ve been on etanercept for 10 years, along side mtx and dihydrocodeine. It was like a miracle for me when I started it - I could actually move! While I’m not pain free and I do have joint damage, I am mobile. I just had a short blip, when my hospital in its wisdom changed me onto benepali. I know it’s a bio similar so shouldn’t make any difference, but I became less mobile, in more pain and stiff. My gp was on the case very quickly and within 3 weeks the hospital had put me back on etanercept.With regards to the actual medication, I only inject in my stomach because I found injecting in my legs was very painful. Also make sure you allow it to warm up before you use it. I haven’t had any side effects. Good luck.

[Evie3]

Hi. I was on Enbrel (Etanercept) for 9 years. It worked extremely well during that time. The epipen is easy to use but ice the area first as it does sting but that is momentary. It always left me with a bit of a sore area but I put aloe vera on that. Like all these, they take a few months to kick in. I am now on Rituximab which is working well. There are a few meds available now waiting in the wings so dont worry if that one isnt right for you. Take care

[cropredy]

Hi Amy,I have been on etanercept for some six years now and it has worked fine for me.

All the very best for 2021.

[Pythagorus]

Hi I have been on Benepali for about nine months and I am also on Methotrexate injections weekly. I take the Benepali out of the fridge the day before and inject into my blubbery stomach. Painless! The first time ,as instructed by the nurse, I injected into my thigh. The pain was awful.I still do get small flares in my wrists, hands elbows and shoulders and ankles. I am not sure if this is acceptable or should I aim to be completely pain free? I have a phone consultation with my rheumatologist in January.

Reading this back I sound a really poor case but should add that that I am average weight and fully mobile and on most days enjoy a lengthy walk so I cant be too bad -can I

Good luck to you Goodman and lets hope it works well for you.🙂

[Monkeysmum]

Hi Foodman500. I’ve been on Benepali, the etanercept biosimilar for about 18 months, along with MTX. Seemed to work pretty well for me for about 9 months, but less so for the last 9 months, although even at these levels I am definitely still in a better state than I was before starting it. Upside for me has been no side effects whatsoever after the first couple of injections (although plenty from MTX!). As others have said above the injector pen can be quite stingy, warming up the injection makes a big difference, and for me injecting into stomach far less painful than thighs (more padding!). Good luck and I hope it works well for you. 😀

[Artroc56]

Worked great for me. Let the pen/ injector come to a nice room temperature. Take an antihistamine beforehand to minimise any possible site reaction - i was told this by my nurse. Some users recommend ice the area but never done this personally.

[stubbs1958]

Hi I've been on this for 15 years still works great for me my ESR level is around 8 to 10 sometimes a bit higher best thing I've ever been on no more constant pain .Good look.

[medway-lady]

It took a long time to work well. And I found the pen uncomfortable and changed to a syringe. That is totally painless and very easy to do. At first I felt very sick but eventually that stopped and it began to work, its been a year now and it does work well. So it might be question of being patient and I'd say go for the syringe over the pen.

[Orangutans]

Lucky you. I was on etanercept for 9 years. It started working within three days. I was able to take the splints off my wrists. Unfortunately I now have developed severe heart failure and have had to come off the injections but I have JAK inhibitors which are working well. Good luck. You will soon get into the injection routine

[RAexperiences in reply to Orangutans]

I’m sorry to hear of your heart issues. That must be so worrying. Was it thought to be related to the biologic?

[Orangutans in reply to RAexperiences]

It was more likely 30 years of methotrexate but Enbrel is not recommended for use with heart failure. I am now on tofacitinib which seems to be working well. I have had RA for 50 years. Am 75 now and still enjoying life and grandchildren. Good luck with your meds x

[Foodman500]

Thank you everyone for taking the time to reply, I have found some of the tips helpful to now about. I will discuss more with my Rheumatologist in January and see how I go. I have had a dreadful time on MTX, with nausea etc , so hopefully its better than that.

Wishing you all well for 2021

A x

[HevJ]

I have been on it for almost 4 years. It’s been a life changer. I was in a bad way when I started taking it (I was on methotrexate too) and I can honestly say by 2 weeks I was noticing it. I am back to running and swimming. I do get tired so have to listen to my body. I haven’t had a flare since starting it. Two issues - you are meant to take it alongside another DMARD, however I have had reactions to them. I was taken off methotrexate as my liver was struggling - they are trying to work out what to do with me, so that clinically they are covered. The other issue - due to lowered immune system I am prone to infections! I hope it works well for you.

[Sammie48]

I started it last Tuesday, the day after i felt really unwell with a severe headache and felt like i had flu. I called my rheumy nurse who said to call her next week if i still felt ill. As the week has gone on, my pain and swelling has increased. I will be speaking to my rheumy nurse before i inject but i suspect i may be starting to go into drug induced lupus. Good luck

[embroy]

I had taken Etencept, until 3 years ago, I found it worked for me for a few years. I had the 25 mg twice weekly, but you have to be careful with this injection as you might get fever, as written in the pamphlet. Had the 50mg, but that was too strong, for me as I had stomach pain, and used too feel tired, so please be careful, everyone body is different.

Hope this is helpful.

[Hidden]

Best advice I was given and I am on week 3 took pen out of fridge 4hrs pre injection then under armpit for 15mins. Make sure you stretch skin and for me tummy is better than leg. No issues with pen and quick and easy too.

[kerryhannah in reply to Hidden]

I agree with all these tips!