Embrel side effects: Hey guys, it's been a while. So I... - NRAS

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Embrel side effects

Katheryn13 profile image
23 Replies

Hey guys, it's been a while. So I've recently started taking Embrel injections for my PSA, and it had seemed good enough, though the injection itself hurt a bit. But then on my 3rd week of taking them, I developed a small red rash on the injection site. I didn't think much of it until it hurt a bit when i touched it. It's faded a lot now and doesn't bother me, but on my 4th week (this week), I got another rash and this time it's almost like a mosquito bite. Red lump and itches. So annoying. Hurts too. I just wondered if anyone else taking this stuff has had the same thing or similar and what happened? Did you stop taking the medicine? I rang the nurse up and they said to take antihistamines but I'm just wary of doing the injection again because I'm running out of places to...er...inject that's clear of skin, since i have Psoriasis. It's also worrying because what if next time it's something worse? I don't know. 

Anyway, sorry for the rambling. haha

-Kat

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Birthdaygirl profile image
Birthdaygirl

Hiya

Sorry you are in a bit of trouble.

Injection site reactions lasted quite a long time for me but I was told not to use the alcohol swabs as they can irritate the skin for some people and to use anthisan cream around the injection site. I don't have PSA, with all that brings to the mix, but I am as careful as I can be about missing moles/blemishes or blood vessels and stretch marks which doesn't leave much space either!

Rheumy nurse also suggested I rotate from thigh to stomach so that I injected in four different places over a four week period which made it easier to avoid previous injection sites. Many find stomach area more comfortable for injections.

Keep talking to your rheumy nurse or GP if things get worse or too itchy or painful. I was told that my GP could give me a cortisone ointment if necessary but  we are all so different.

Hope things calm down sooner rather than later and that Enbrel works for you.

All the best

BG

Katheryn13 profile image
Katheryn13 in reply to Birthdaygirl

See, I didn't like injecting into my stomach when I took mtx I couldn't get a good grip on it, and the fact that you have to press down hard with these new Embrel pens isn't making me enthusiastic to try again there so I stick to my upper leg. I've taken antihistamines so I'll see how they react. I think my nurse I'd reluctant to take me off the meds and change, especially if this one is doing some good. As far as reactions go, I've been ok apart from this weird red lump. Sigh. Thanks for commenting.  

Birthdaygirl profile image
Birthdaygirl in reply to Katheryn13

After two years I still use two hands to inject. One to steady and push down and the other used to press the top. The reason being the damage to the joints in my right hand that occurred before late diagnosis or Medications. 

Worth mentioning everything to Rheumy or nurse but really hope it all settles for you. It seems to take time to settle down for lots of people. You are not alone. 

Mandalou profile image
Mandalou

Keep at it, some weeks you will react more, some not at all.

Alternate between each thigh. Your symptoms are very common.

Mx

Godandme profile image
Godandme

Please my friends try using diet and see if you get the results I have. For those who are not familiar with my blog....I was on Methotrexate and Hydrochloroquine and after reading the side effects my darling daughter went into overdrive and researched what affects RA.  I have been on a gluten, dairy and sugar free diet. No tomatoes, eggplant, capsicum, white potatoes or blueberries. In the eight approx months that I have been on this diet, I have only taken 10 Panadol apart from occasionally using Arnica rub 

I wish you all the best for your health.

Luisa 🌸 

Witness1 profile image
Witness1 in reply to Godandme

I also thought I was 'curing' my RA with diet and it seemed to help for quite a while. Unfortunately I then had a massive flare. I now believe that period cost me a great deal of bone damage. Fingers crossed this doesn't happen to you.   Maybe you could have blood tests while following your diet to see that the disease really isn't active? 

Godandme profile image
Godandme in reply to Witness1

I do have regular tests and thank God all is good.

Luisa 🌸 

Matilda7 profile image
Matilda7 in reply to Witness1

Unfortunately you can have perfect blood test results and still have erosive damage, as happened to me.....the damage only showed up on scans, and what a shock that was.

But if you are pain free and don't have swollen joints and the blood tests are good  then you should be OK!

cathie profile image
cathie in reply to Godandme

It's not helpful to persuade people off meds that are working. No harm in thought about diet but as well. 

Godandme profile image
Godandme in reply to cathie

I don't mean to persuade people. Just telling my story.

Luisa 🌸 

hellykay profile image
hellykay

I had problems with site reactions.  I took antihistamines for three days a week in the end.  Mine were a bit more extreme though.  The site reaction would end up about the size of a dinner plate and then fade out to a massive bruise .  I got switched from pens to vials and now have no reaction at all.  I was told that generally its not the Enbrel that people react to but the preservative or plastic of the pen.  

I know that some people on here have found that over time the site reaction goes away rather than getting worse. Hope things improve for you. 

Witness1 profile image
Witness1

I remember this all too well Kat. After my first few Enbrel injections the injection site itched like crazy. For three months I'm sorry to say. BUT the reaction suddenly stopped and hasn't ever recurred. I know we're all different but this might be what happens with you too. I wish I'd known that the itching might stop and the injection site would stop being inflamed, but they either don't know or don't like to raise our hopes. All I know is I very nearly gave up and Enbrel is the only drug that has controlled my RA in 3 decades! Good luck.

Matilda7 profile image
Matilda7

I had reactions to Enbrel at the injection site (ISRs), which got worse every time. Eventually I had to stop as they were so alarming...they covered most of the top of my thigh and were purply red, raised and very hot and itchy. But the improvement in my joints, which had been obvious from the first injection, remained for the following 2 months, while I waited for another consultant appointment!

I'm now on Humira and have had small reactions, and am leaving more time between injections than suggested, in the hopes that this way I shall be able to tolerate it. I wish someone had suggested this to me when I was on Enbrel as it worked so well ie it reduced the inflammation in my joints dramatically. The same dose is given to every adult, regardless of weight, which seems strange.

Hope you find a way to manage your reactions. I tried both antihistamine cream and tablets...my consultant also suggested 1% hydrocortisone cream, but nothing worked for the Enbrel ISRs, probably because I kept on injecting without giving my body time to recover. But I understand that this works for some people, ie they keep on injecting and the reactions go away.

 Unfortunately there doesn't seem to be any research into this problem. It may be that the people whose reactions go away had much smaller ISRs? Maybe NRAS could collect some data on this...is this the sort of thing that NRAS do? It would certainly be helpful if someone did it as it is such a common problem.

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS in reply to Matilda7

Hi Matilda

We're not a research charity (Arthritis Research UK are the main research organisation dealing with RA and other forms of arthritis in the UK), so while we could poll our Members or HU forum users to see who gets injection site reactions, I'm not sure how helpful this would be, as it wouldn't necessarily be reflective of all people with RA and would probably only tell us what we already know, which is that it is common. It is also information which has already been gathered more accurately elsewhere.

I have had a look online and have found this interesting article which looks at some of the biologics and gives an idea of the percentage who have these reactions:

medscape.org/viewarticle/76...

In terms of there being research into prevention or treatment of these reactions, this would be outside what we can do, but the following may be helpful for some.

The advice from the British Society for Rheumatology on treating injection site reactions:

"

Injection site reactions are not uncommon for the biologic drugs self-administered (subcutaneous injection). The reactions are often mild and may lessen with repeated doses. The symptoms are often redness, itching, bruising, pain and swelling at the injection area. Simple measures such as a review of injection technique with the nurse, application of ice, taking pain killers, the use of mild steroid cream, tea tree oil and rotating the site of injection usually help. Rarely do patients need to stop their drug and switch to a different biologic because of this.

"

Preventing the reactions in the first place would be something for the individual pharmaceutical companies who manufacture the drugs to look at. It may not be possible to entirely prevent this, if it is just the nature of these drugs, though I know that some drugs currently being researched are able to be taken by tablet rather than injection, whereas biologic drugs are only injection or infusion.

I hope this information helps.

Victoria

(NRAS Helpline)

Matilda7 profile image
Matilda7 in reply to Victoria-NRAS

Thanks for the prompt response Victoria!

Katheryn13 profile image
Katheryn13

Thanks for all the replies. After taking an antihistamine and using some antihistamine ointment, over night the area has reduced underneath but is still quite red on top, though hopefully in a day or so it should go. I'm glad because the itching was so annoying. Lol.  I'm going away next week so I may miss a week just in case i have a reaction worse than this week or I can't control it. I'll see how things look when the time comes. It's nice to know I'm not alone in these things. Haha. Xx

Darlywarl profile image
Darlywarl

Hi. The redness and itching lasted for about 10 injections. Then I took an antihistamine tablet 20 mins before and put a cold pack on my site for 10 mins before. That really helped 

Karen77 profile image
Karen77

I don't always get a reaction, but sometimes I do and I just ignore it. I don't want to risk them taking away the one drug that seems to be effective at managing my RA. Good luck to you.

Ranjmcl profile image
Ranjmcl

Having already through this the thing you have to balance is the rash v the RA. I'm going to start on Embrel so this is useful. But the way I feel now - is take the rash over the RA anytime

Good luck

Audyk56 profile image
Audyk56

It hurts every week but only for a day, in my case it gave me back my life. Don't get me wrong sometimes I have pain it is not a bed of roses, but how far I have come from really bad pain every day I think it's worth it to take Embrel.

fizbom profile image
fizbom

Someone must have read my mind!! I started on Enbrel at the end of March and out of four injections I ve had three reactions. They don't look nice but hopefully my RD will be more under control, I had a reaction when I started taking Mtx so hope it will lessen in time. Thanks for all the helpful advice and will try some of the things other have found work I have one thigh for Mtx and one for Enbrel what a life eh?? Thanks for all the information xx

fizbom profile image
fizbom

Hi just to say I've tried not using wipes and put an ICS pack on before injecting and a gain when I'd done it? It seems to have worked! Will let you know how it goes thanks for all the hell xxx

Mimzy1965 profile image
Mimzy1965

Hi Kat,

Yes it does the same thing to me but I think the benefit far outweighs the risk. It only last a few days, and I just keep alternating legs. I pray it is working for you! God Bless!!

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