Enbrel reaction

[bernese1225]

Hi, this is my first post. I was diagnosed with RA two years ago and I've tried Sulphasalazine, Methotrexate and Laflunomide but had adverse reactions to all of them. I was put on Enbrel three weeks ago and because I'm quiet sensitive to medication i.e. various antibiotics, the nurse who came to show me how to administer the first injection told me if I had a delayed reaction, after she left, I had to dial 999 and needed blue flashing lights to A&E. I was worried that if I did have to ring how long the ambulance would take to get to me as our town's hospital has closed and we have no A&E. The nearest hospital is 11 miles away and ambulance waiting times are generally 3 hours plus, luckily I didn't react with the first injection or the second but I did feel very unwell for three days after.

I had my third, weekly injection on Wednesday morning in my stomach and in the afternoon one of the previous injection sites (top of right thigh) started to hurt and developed a large, hot, red welt. I'd had a steroid injection in my ankle joint about two hours before the reaction came up so rang my RA team to ask if this could have caused the reaction and should I take an antihistamine. The line was busy so I left a message but no one got back to me. By tea time the heat had gone from the welt and even though it was still red, I thought it was going away.

I was fine most of yesterday, just had to rest my ankle. Then late last night my face started to swell, my right eye started to close and all three injection sites (top of right and left thighs and stomach) came up in hot, red welts. I rang 111 to ask for advice as I wasn't sure how much of an emergency it was. The lady said I had to get to hospital within the hour. I explained I was on my own and couldn't drive with my ankle, she told me to get a taxi. I got to A&E at 1.20am. They put me on an ECG as my heart was beating very fast and my bloody pressure was up. They then told my to sit in the waiting room. I saw a young doctor at 5.10am who told me she didn't know anything about Enbrel and to just go home and take an antihistimine but go back if I got worse. Luckily I had some antihistimines at home because she didn't offer to give me any.

I rang my home care nurse this morning and she said I can't have anymore Enbrel until I've seen a specialist nurse as it may cause a far worse reaction. She said I'll most likely have to stop taking it. I'm gutted because it's really helped relieve my condition in the short time I've been taking it but it's not worth this worry. I also rang my GP and he gave me antihistimine tablets and cream, as the welts are still there. I'm hoping it calms down because I can't afford another £34 for taxis to the hospital My home care nurse said I should have asked for a doctor who knew about Enbrel. If I have to go back I'll print the information for the side effects and take it with me.

[Hidden]

I'm speechless. Something tells me you're not one to panic .... just as well! Thinking of my own circumstances (selfishly!) i.e. it's not always that easy to get hold of a taxi where I live. You came up against a brick wall once too often for my liking, anyone would think the NHS isn't quite functioning as it should.

Take good care of yourself, hope the reaction calms down ASAP. And yes, it's a real shame about Enbrel, hoping there's an equally effective alternative.

[NeonkittyUK]

I have had site reactions from Enbrel which resulted in me eventually stopping it but also because it became ineffective .. I developed antibodies to it so I did not pursue anything more than a 1 per cent steroid cream so I may have been prescribed anti-histamine if site reaction had been my only problem and told to persevere a bit longer as mine were about 3 inches in diameter and risen hard and red like someone had hit me on the thigh, but always on the injection site I had just done .. not a previous one. Did you tell the person doing the steroid injection in your ankle that you were going to inject the Enbrel later that same day? I do recall having steroid injections and being asked when I did my click-pen etc. I never did it within 24 hours of having the steroid. I hope you can meet with the rheumy and it will settle down with the site injections and no more incidents. Not good at all having to charge off to hospital. I'm sorry that the hospital/rheumy helpline did not get back to you. I know mine would have done so instantly. Hope someone has got back to you by now and that you see your rheumy very soon. Good luck.

[bernese1225 in reply to NeonkittyUK]

It was my rheumatologist that injected my ankle and I made a point of telling him I'd had my Enbrel injection that morning and he said it would be ok. I've managed to get an appointment with a specialist nurse in my rheumy dept on Wednesday coming.

Our hospital has all but closed and most of the services transferred to a different town. The rheumy dept is still there but I'm not sure for how long. They have limited staff and always run off their feet so I understand they can't always get back to you when you ring. They're really short staffed, to the point were my home care Enbrel nurse travels from a city 30 miles away, once a fortnight to see me. Having this desease and the NHS the way it is in our area is very worrying.

Thank you so much for replying and well wishes, it's good to know there are people who understand.

[NeonkittyUK in reply to bernese1225]

Hoping that things really settle down for you Bernese and hope the site reactions stop if they let you continue with Enbrel. x

[earthwitch]

Thats pretty awful for you. Just a thought - I've heard on another message board that sometimes the allergy problem with antitnfs isn't actually the biologic itself, but the fact that there can be latex somewhere around the syringe (on the cap?). Might be worth contacting the supplier and asking if that is the case, especially if you react to latex anyway. Also, if you are that allergic, see if you can get someone to refer you to allergy testing, and that might also help narrow down which component of the med is causing the problem.

[Jora]

Poor you. I am so sorry. I'm sensitive to drugs myself, but touch wood, I haven't reacted badly to Enbrel. The worst that can be said in my case is that it's been fairly ineffectual. I can well understand how gutted you must feel, but hopefully one of the other Biologics will suit you better. Take care.

[NeonkittyUK]

Hi Earthwitch & Bernese .. I wondered that myself too as my welts/Enbrel site reactions were tickly, prickly and bright red. I was told the cap part was not touching the needle as that was suspended inside but whether the Latex can migrate from the cap etc., I do not know. I did have a Latex allergy test due to having some reaction to a B/P test in hospital where my arm came up very red but it was the nursing assistant doing it too tightly with the band, nothing more. I was tested for other elements of the Colophony family (resin, strawberries, kiwis .. and others) and was told no Latex allergy so my thoughts on why Enbrel reacted for me were not Latex. I am sensitive to some plastics though but not allergic and react to Elastoplast adhesive so never use them, just Micropore or the white soft plasters whose name I have forgotten! The Latex test was a straight-forward blood test . . no pricking the arm multiple times or anything complicated, and came back in a week. I did have it done privately as I was awaiting this result so I could complete a medical procedure, which the consultant needed me to confirm I was not allergic to Latex or plastic.

[Hobbits]

1-888-4ENBREL or 1-888-436-2737 is the direct line to EMBREL, you can call this number and they will respond within an hour, they have all the answers to anything Embrel, and can give you direction when you should be going to hospital, and can give you information on what to tell the doctor.

If a doctor at the hospital does not know what to do, give them this number and they can speak to an Embrel specialist.

I did not like the sounds of that when you said the doctor didn't know about Embrel and just sent you home. That is very careless and he had a duty to make sure you were ok before sending you home.

Unfortunately in my country, they do not usually give you over the counter meds (non prescription) either at hospital, you have to go pick them up on your own, your responsibility to find your own transportation...however he could have given you one dose so that you then had some relief and could go buy more at the pharmacy.

I think there is a good lesson here for everyone.

Keep a spare bottle of antihistamine at home just in case. I am on a biologic as well, and when I did my training they advised if I had any swelling or site reaction after I left the clinic, to take anithistime, if it was anything serious like breathing difficulties take antihistamine and call 911 (Canadian emergency services)

However it would be helpful to know this in advance.

It sounds like Embrel is not the one for you, but there are lots of other choices and it takes time to find the one that suits you best. Good luck in your treatments, and I am hoping that they can get you on a biologic that you are not so reactive to. It does suck when you find a drug that works good, but you can not take due to side effects......anyone with RD has probably felt the disappointment of this.

[bernese1225 in reply to Hobbits]

Hi Hobbits, thank you for your advice. I have an appointment with my rhuemy nurse in the morning and will hopefully find out why the doctor sent me home with no medication to alleviate my symptoms.

I live in the UK so the Enbrel telephone numbers don't apply but thank you. I have not been given an emergency contact number for Enbrel and wasn't informed about keeping antihistamines handy during my training. I'm collating quite a list of questions for my nurse to answer.

[Franm]

Aww you poor thing. I hope you are starting to feel better. It sounds like you had a horrendous and scary time. I hope you have an emergency contact number now. I am so with you as I have had allergic reactions to sulphasalazine, mtx, ibuprofen, and a couple of others I cant remember - or have hidden somewhere in my brain filing system. keep going and please let them try another medication it will work and you can be pain free and happy. And dont forget we are here for you on here.

Hugs xx

[bernese1225 in reply to Franm]

Thank you Franm xx