Enbrel site reaction

[alsmum]

Hello all, I hope this cold weather is not affecting you too much. My question is that I started on Enbrel 7 weeks ago and had no problems (apart from the fact I find it painful for that 10 secs!) but the last 2 weeks I have had noticeable site reactions which are around 2 x 1 inch, raised and red with a hard centre but not itchy. Has anyone else had this?

[Paula-C]

I've been on Enbrel for over two years now. At first I had no reaction to the injection at all, but for the past year as soon as I pull the needle out a red lump about the size of a 10p appears, not itchy but a little painful to touch, it last for about an hour. I told my consultant last September and he didn't seem worried about it.

If you are worried about it I would ring your specialist nurse up.

Hope this helps and that you get the same result that I have had from Enbrel. .......In remission at my first 12 week appointment and thankfully still am.

Paula x

[alsmum in reply to Paula-C]

Thanks, Paula, sometimes it just helps to know other people have the same reaction. How wonderful to be in remission, I am so delighted for you and I have a good feeling about this drug for me too. Best wishes. Fiona

[Hidden]

Sometimes I have had a similar reaction and it goes within a couple of days. I have put it down to maybe injecting near a past site as I have been injecting since Dec 2012. Maybe you were near one although you have not been doing it that long.

Another tip I had from the nurse who came to my home at the beginning was to use the swab wipes AFTER I had injected as this helped better than before. As she herself had RA and was injecting I took her advice and have always done it this way and if I still had any bleeding after that used a cotton wool pad. I am known to be a 'bleeder' good for giving blood but not for something like this!

Hope this helps. xx

[alsmum in reply to Hidden]

Thanks, Georje. It could just be that my poor thighs have had enough as I've been injecting Mtx for the last few years as well! Thanks for the tip, I will try that.

Best wishes.

Fiona

[Paula-C in reply to Hidden]

I don't use the wipes. My specialist nurse advised me against them saying that I may have a reaction to the wipes and if I did they would not know if it was the Enbrel or the wipes. I always inject after I have showered.

[hatshepsut]

I was on enbrel, doing fine. Then HAH messed up delivery and I missed a dose. Then I had to stop while having a knee replacement.

Had started to have a small reaction after the missed dose, then when restarted it after my knee, I had massive site reactions covering my whole thigh. Red , swollen and hard...and very painful. Took pictures. Tried antihistamine, cream, ice. Nothing worked.

Finally my consultant said I had to stop it. She said it used mouse protein, and she thought I was allergic to that, so she changed me to humira which uses human protein.

I have had no issues with humira, unfortunately it's not working as well as the enbrel.

I do hope that you don't have such a severe problem! Try antihistamine, some people find that helps.

Good luck! M x

[Hobbits in reply to hatshepsut]

I was reading your post and read 'mouse protein' in Embrel

I'm not on Embrell but find this fascinating, and I plan to read up on it. My first Humira shot is planned for next week. I have read from lots that they switched from Humira to Embrell and it worked better, but understand the two biologist are very similar. Learning something new every minute!

[alsmum in reply to Hobbits]

Thanks, Hobbits. It really is a learning curve! Best wishes. Fiona

[IainM in reply to Hobbits]

It's humanised from mouse protein hobbits

[Jeanabelle60 in reply to Hobbits]

Hobbits, I thought I was spelling it wrong.....it is eMbrel isn't it? I should know better. X

[Hobbits in reply to Jeanabelle60]

lol no worries, my spelling is atroshish ( i know thats spelled wrong cause spell check says its an error, but the only alternative it gives me is Hiroshima)

[Jeanabelle60 in reply to Hobbits]

Fiona, everything is wobbling i'm laughing so hard......don't you just love modern technology???????????

[alsmum]

Thanks for this, Hatshepsut. Sounds horrible. I will try the antihistamine as so far the Enbrel has been good and I would like to keep taking it. I hope the humira starts to work for you. Best wishes.

Fiona

[Patsy-57]

I was fine until the fourth injection. Then started to add antihistamine on the day of injection. Then had a really bad reaction which covered half of my stomach with a raised, hard red lump. I contacted the specialist nurse team and discussed what to do. I now start antihistamine two days before and three days after. That works for me.

Patsy-57

[alsmum in reply to Patsy-57]

Thanks, Patsy-57. I'll call my specialist nurse tomorrow but that sounds good and definitely worth a try as I want to keep going with this treatment if I can. Best wishes.

Fiona

[Judetheobscure]

A few months ago had a similar reaction, although larger, + hive like lumps on both legs as though the non-injected leg was coming out in sympathy. I was advised that this was probably a reaction to the preservative as the amount can vary from batch to batch. I persevered and just have small site reactions again which are negligible. But always best to check as individual reactions may need assessing. Hope it calms down for you because I know if Enbrel works for you it can be very effective. Fingers crossed.

[alsmum in reply to Judetheobscure]

Thanks, Judetheobscure. I do hope it stops as I do want to continue if possible. Fingers crossed too!

Best wishes.

Fiona

[Jeanabelle60 in reply to Judetheobscure]

That exactly what I was told too jude.

[IainM]

I was fine up to week 5 thats when the site reactiin happened, every week getting bigger and bigger until it covered to whole top of my thigh, I was already on prescribed anti hist and a strong steroid cream to combat it, but it was useless,,this continued until week 16, I was having terrible pins and needles in the heel of my hand, I was taken off enbril until it cleared and then put back on it, next day my whole bottom half was covered in rashes and welts, I was then taken off it, my body just didnt like it even though it worked amazing, hope you get it sorted and you dont have to go through what I did

[alsmum in reply to IainM]

Thanks, IainM. Sounds awful. I do hope you are getting a treatment that is working for you now. Best wishes.

Fiona

[IainM in reply to alsmum]

Having failed Cimzia I am now on tocilizumab, had 4 injections and so far nothing,,I have faith in this bio so fingers crossed where possible lol, Toci is quite similar to enbril in that its huminised from mouse so hooing for the same effects on disease, so far absolutely no site reaction with it at all, long may it continue, really hope yours goes away and doesnt cause you too much trouble

[alsmum]

Thanks so much, Iain. I hope the Toci works for you.

Best wishes.

Fiona

[linbin in reply to alsmum]

Hi

I started Enbrel in July last year, and like a lot of the lovely folks here, was fine for the first 5 weeks or so, then developed a large red raised area not just on the leg I injected but on the opposite leg too. I suppose it came out in sympathy, hehe.

I have used Anthisan Cream since then, and rub a little on the area I intend to inject and hour or so before, and again immediately after injecting. Amazing! It has worked brilliantly. No more reactions. Hope that helps.

[alsmum]

Thanks, Linbin. I'm so pleased this has worked for you so fingers crossed it will for me too. Best wishes. Fiona

[Beverley-NRAS]

HI everyone,

just to clarify. Infliximab is a humanized mouse monoclonal antibody and Enbrel (etanercept) is a construct comprising of human TNF-alpha receptors and a monoclonal human antibody, so is fully human. I have put a link below on some information about this if anyone is interested:

rheumatology.oxfordjournals...

regards

Beverley (NRAS Helpline)

[alsmum in reply to Beverley-NRAS]

Thanks for this, Beverley. Really interesting.

Best wishes.

Fiona

[Jeanabelle60 in reply to Beverley-NRAS]

That is really good to know, thhank you so much for the information. As someone who advocates against vivisection I got very concerned reading this posting. Are there any drugs used for RD tested/used on animals? I'm on Abatacept at present but am expecting to be taken off it soon as it is no longer working for me.

[Beverley-NRAS in reply to Jeanabelle60]

Hi jeanabelle60,

don't know the answer to your question off the top of my head but I suspect that they do use animals to test these drugs. I had a little look but could only find very general references, nothing specific. Information on this is not easy to find in the public domain for obvious reasons. I think the best way to find out this information is to call the pharmaceutical companies directly for each drug and ask them. Not surprisingly, they are reluctant to publicise this sort of thing. I did find this article about drugs and how they must be tested under UK law that you may find interesting:

bbc.co.uk/ethics/animals/us...

Beverley

[Jeanabelle60 in reply to Beverley-NRAS]

Dear god Beverley, that is very upsetting to people like me who are so against vivisection of any kind. I'm feeling almost ashamed as I have had some great results from Biological drugs.....I never at any time thought of them being used on innocent, defenceless creatures. I had some terrible side effects too from some of these drugs and am about to be taken off them completely......the though of creatures suffering for my benefit is really upsetting. I never thought of them only my own pain.....I'm very torn now about the future. I suppose it is natural for us to think only of ourselves but I do feel very badly about this and the thought that an increase in vivisection in future may be called for.......our poor animals!

[Beverley-NRAS in reply to Jeanabelle60]

Hi Jeanabelle60,

I know that article was a few years old and things may have changed but couldn't find anything more recent. You shouldn't feel ashamed because at the present time there is no alternative and I am sure that we all would like to see testing on animals abolished. The best thing that we can do is to keep campaigning to get a method of testing that does not require animals but we need to be healthy ourselves to do this. It is not the best way but at the moment we have no alternative. So we have to reluctantly take drugs that have been tested on animals but we don't have to like it.

Beverley

[Jeanabelle60]

Hello Alsmum, I had the exact same reaction form Enbrel too. A large, hard, red lump at injection site and sometimes a white ring around the red lump, frighten the life out of me at the time I can tell you. My Rheumy told me it wasn't unusual with Enbrel and he was was told by the manufacturers that it was more than likely due to preservatives in the mix.

I also found my skin all over became a bit more problematic. Eventually I was taken of Enbrel and went on Tocilimub but it simply didn't do a thing for me. I am now on Abatacept but it has stopped working after a brilliant 18 months almost pain free. I'm telling you this because one of the changes I observed that indicated that the Abatacept wasn't working was the huge improvement in the condition of my skin. My skin is now smooth and isn't coming off in chunks anymore. It is remarkable the difference it has made.

Bio's are very, very strong drugs and are bound to have side effects, really bad skin conditions, for me, was one of them. I was out a small fortune buying Aveno lotions and potions. They are very good and did help when used daily but now I find I don't need them anymore.......of course the really big down side is that I going back to the condition I was in before going on Bio's. I'm at the end of the road, for me, with regards to them. Seeing my Rheumy on Feb 12.....Jan 14 appointment had to be cancelled due to heavy snow here in the north of Ireland.......

Hope I've helped you a bit, all the best. Jean.

[alsmum in reply to Jeanabelle60]

Yes, Jean, you have, thank you. I'm so sorry nothing else has worked for you especially when you know the drug does work, if only you could get it without the side effects! Good luck with your next appointment and fingers crossed for you. We've had a terrible start to 2015 here in the north of Scotland too with gales and snow - it can only get better!

Best wishes.

Fiona

[Jeanabelle60 in reply to alsmum]

Thats the thing isn't it Fiona, nothing last forever, the good or the bad......I'm feeling not too bad today. It really is a case of waiting to see how I feel when I get up in the morning. We have more snow forxast for here in Ireland too tonight and -7C temps.......but, there are signs of spring around, if you look for them. All the best and thanks for your reply, your a doll. XX

[alsmum in reply to Jeanabelle60]

Brrrr, -7, really cold. Keep warm and I hope you have a good day tomorrow. I think you are right about spring - we have snowdrops!

All the best, Jean.

Fiona