Hi I was just wondering if any of you have had this. I've been in etanercept since the end of August 2014. I've noticed recently it's become more painful to inject then since Friday (my injection day) I've had bruising and a red itchy patch which seems to have grown. I read some where it should go after 3 days but if it gets worse contact a dr. But is that after 3 days I call a dr? I'm trying not to look up too much info as it can make me feel all panicky. It also always shows pictures of those that have had Steven Johnson syndrome (frightening stuff some of these rare side effects) The rheumatology helpline isn't open today and I can't find my patient info leaflet (typical). My experience is that GPs have very little experience with these newer drugs unless I've been taking them a while then they sort of catch up. So I'm not hopeful an oncall gp would know. Am I being totally neurotic? I didn't sleep very well because of pain in my arm so think maybe that isn't helping me think things through clearly.
Thanks for reading xxx
Lyndsey
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Giggle
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I know it was always a general suggestion and antihistamine cream but clearly you need professional advice but those " first aid" things might help in the meantime to make it feel a bit more comfy xx
Definitely think 111 would be good. Antihistamine cream might help short term. Would ring help line on Monday anyway.
Do hope it clears up soon. I had to stop etanercept because I became sensitised to it, had massive sores on my thighs, tried everything. Hope this is just a blip for you. M x
Thanks for replying I am keeping an eye on it. I've found that I don't feel as great on it as I did the first few weeks. I said to my husband that it feels like it's not working as well now. Hopefully it's just a blip. Hope you're having a good weekend x
I also started Enbrel late August, no site reaction first few times but this last week very red,itchy raised area on my thigh ( where I injected). Nurse who came initially told me site reaction quite common ......I used a 1% steroid cream on it and have taken allergy tabs for few days.......only just gone down today, injected Tuesday. Next week I will take allergy tab day before and see what happens!
Actually I wasn't too concerned about it until I read this post......maybe I should be more concerned......think if it happens again this week I will contact rheumy nurse.....like you, I don't think GPS or general medical people will know anything about it.
The nurse who came initially gave me her contact number so if you have that maybe you could give her a call tmoz?
Hope all ok and it goes down and of course that Enbrel works well for you x
Don't be afraid, most side effects are written on drugs so people are aware to contact gp for help but if you even look at paracetamol there's a list as long as your arm. If you get them act on professional advice but often they can be remedied and not serious, however that said , still giggle get checked xx
Hi Allanah thanks for replying. I haven't rang 111 but am keeping an eye on it. Because of bad reactions in the past I've always felt weary with these meds. With the rituximab I felt bad for months and felt like no one was listening for my consultant to finally say he thought I'd has a rare side effect that makes your facial glands swell. Thanks for taking the time to reply and hope you don't mind me getting myself all wound up earlier lol. I shall speak to the rheumy team tomorrow x
Not at all you know your own body and if u need to talk to the medics before do so!! Maybe the cold pads will help but of course if u feel worse call them xxxx hope u feel better soon xx
Hi Beaches thanks for your reply. I haven't rang 111 but I'll contact the rheumy nurse tomorrow. It's strange isn't it that they've started after a few weeks on it rather than straight away? Because of bad side effects in the past I think I get myself all wound up and this morning when it was all itchy and had grown my mind went into over drive. i felt great the first couple of weeks but not so great now. How are you finding it? I'm not able to ring the nurse who came out as they were from healthcare at home and said I'd be discharged from the nurse a week after my second visit. Thanks for taking the time to reply x
Yes It is odd how reaction comes after a few ok injections.....am sure there's some reason for this, think I've read it before. Jury is still out whether it is helping yet or not, I had steroid jab few weeks ago so until that wears off I can't really tell. Like yourself, first week or so I definately thought it was doing something but now not so sure. trying to remain hopeful x
I had site reactions with this, stopped it because it didn't do much for me. I defeated the site reactions by taking antihistamine pills a couple of days before/after the injection and putting on antihistamine cream. I was able to gradually withdraw them and within a month I wasnt getting a reaction. Hope you can benefit from this.
Oh that's interesting as I found I felt great the first couple of weeks but not do good now. I said to my husband it doesn't feel like it's working as well now. Thanks for replying. Hope you don't mind me getting myself in a tizz lol x
Hi guys thanks for all of your replies. I haven't rang 111 my husband said it had gone down from when I first posted earlier. I've put some cold ice on it and measured across it so I can tell for certain if it is spreading further or going down. I had reactions to both Cimzia and Rituximab in the past so i always feel a bit on edge about meds. That's why I try not to read too much info otherwise I just wouldn't be able to take them because of how ill the others have made me feel. I shall check it again later and if it's worse will ring 111 then. I'll definitely speak to the helpline tomorrow if anyone's answering or ring the gp. I do get myself wound up and spending the night in pain and no sleep just exasperated it all.
Hi If it's still there take a photo to show nurse/gp/rhumey . Next time how about taking a photo then you will have a reference point. Good luck. hope it's still getting better
Its not easy dealing with these things without proper backup. Just hope we can help you by sharing our experiences. I agree witih Mary53 about the photo - it might be handy to check how big the reaction is.
I've been on enbrel for about 3 months. No site reaction with the first few injections, had reactions with the next 3 or 4, then no reactions with my last 3 injections. It will be interesting to see if the reactions return in the future. Enbrel's been working great for me up until this last week..currently not feeling as good as I've been. I'm hoping it's not the enbrel losing effect and it's just a bit of a flare, which is something the nurse said I would continue to get though they should not be as bad as before I was on enbrel.
Hi wishbone thanks for your reply. It's strange isn't it how the reactions start after you've been on it for a few weeks. The literature seems to suggest site reactions start at the beginning of treatment. They told me the same about flaring not being as bad as it would without enbrel. I'll be interested to see what my latest bloods are as when I started my crp levels went right down from being in high 40's to 50's. Then I felt great now I don't feel as good and I'm having swelling in my ankles and painful shoulders again. I hope it's just a blip and enbrel is the "one" for both of us xx
Hi giggle, rheumy nurse told me that my bloods for the last two months have been excellent, but they were taken before this flare, if that's what it is? Despite this little setback I'm still loads better than I was before starting enbrel, just keeping my fingers crossed that it's just a blip and things don't get worse. Had my latest bloods done a few days ago so will have to wait a few weeks for results. I have the readings jotted down every month in my methotrexate booklet by the bloods nurse at my GP's, but for some reason they leave out my crp and esr readings despite me twice asking to include them.
Hope your setback is also just a blip and the reactions calm down as they currently have with me..for the time being anyway........
Hi Lyndsey, I hope you can get some advice from your rheumy/GP/nurse soon. Hope you can get some sleep too. Does putting a cold pack on the inflamed site help you? I have one of those Therapearls gel bead packs which you freeze. Slightly less icy and more malleable than a bag of cubes (cost about £14 from Boots or online.) I hope you find you get used to your injections and the rash/reaction lessens which I understand can happen with some who take Enbrel. I had no site reactions for three weeks then started. It can apparently go either way! Sadly mine lasted six days of each week and were actually painful and itchy even if not anything like as large as some reaction sites people have detailed. Mine was about 2 x 2 ins at the worst but it felt like someone had whacked it and it felt hard and risen. I injected into the top of my upper thighs as was the Enbrel literature and rheumy nurse preference. I had been prescribed steroid cream and had applied it once and the hope was it would calm it down then my rheumy said the Enbrel was doing nothing for my RA/inflammation/blood tests after two months and even though a but too soon to tell in view of the reactions, she was changing me to something else. By the time I stopped it and started Humira I had had 3 months on Enbrel. It did start with brilliant effects, and gave me excellent mobility but quickly faded after 5/6 weeks and it is interesting to read what you said about feeling it was working brilliantly from the very start but then waning, which is exactly how I felt.
From that same first Enbrel injection day, I was moving better and could go upstairs without a stick. Unheard of in years! Then all sorts came back ... mobility wise. Even stood up at a gig! I hope yours is a blip and you can get over your reactions with antihistamines/steroid cream as others have detailed and hope you can speak to your rheumy/nurse. If the med is working it seems such a shame to have to stop due to the skin reactions. I was tested for Latex allergy (colophony allergies) but apparently I don't have that or plastic allergy so it can't have been the pen cover/packaging.
I had my first Rituximab duo of infusions in April and so far this is the only med to have really done anything noticeable/positive for four years. So we have done a reverse of our meds, you and I! I still have some issues as my RA has caused a lot of joint damage, from previous years, but I can see ankle bones and knee caps and knuckles and I don't have the constant lightening bolts through all my body with constant pain I had pre-Rituximab. It has taken my ESR from 80's to 23 and my CRP from 50 to under 5. I have OA damage from a long time back and a lot of ankle/knee issues but in general I can move about without anything like the pain and seldom have to take oral painkillers (although I do have a Fentanyl patch but hoping to come down that soon) and hardly any anti-inflammatories at all in six months since my Rituximab infusions. That is a welcome bonus indeed.
Hope you are like Wishbone and your site reaction calms down. Ice/coolpacks do go a long way to help but again always wise to let your rheumy/nurse everything you have been doing even if as simple as an ice pack. I wish you both great luck with Enbrel and here's hoping for some sleep for you Lyndsey! Yes, photos are good as how often do we arrive at our clinics to find the evidence of something which was really troubling us has gone or subsided?! NK x
Hi NK. The RA helpline was closed at the beginning of the wk. I'm waiting for a nurse to call me back. I didn't try the gp in the end as I had a feeling he'd tell me to try the helpline. The injection site has definitely gone down now but it's still red and slightly itchy. It is interesting as a few people have said that they developed reactions after a few rounds. I hope it's just a one off but I suppose I won't know until I have it again on Friday. I will ask my husband to get me one of those packs from boots you mentioned as it might make it less painful to inject too. I have the heated hand warmers which I find really good when my hands are sore but a bit of a pain having to boil them before I can reuse them.
I'm glad to hear rituximab is working for you. I thought it was a horrendous drug. Just proves the saying one person's poison is another person's cure. I hope it keeps working for you on your next round too.
Thanks for taking the time to read my post and reply. I hope you continue to an improvement.
I am glad the site reaction has calmed down Lyndsey. I hope you can get the Therapearls gel bead freeze pack/pillow. It is about 6 x 4 ins. There are many varieties and some knee shaped and neck shaped but this one is just a little rectangle. It is strange how some people have such intense and awful reactions to meds and then others have nothing or little. Yes, I have read too that there can be a blip with Enbrel reactions and it calms down so let's hope. I was very anxious that I may freak out at my first infusion of rituximab but everything was fine. Just the antihistamine tablet they gave me. I could not keep my eyes open and had to be woken up to have my BP done as I was out for the count! Never liked Piriton! Good luck x
Oh you were lucky then. On my first infusion they had to stop it because I began burning up and my chest was really tight. They started it again though after waiting and more Piriton. It was after the infusions though that was worse I felt bad for months. It put me off trying these newer meds but I haven't had any of that with enbrel-touch wood-
Oh no so sorry you had that quite off putting and scary reaction. To feel definitely worse too is demoralising. Only reaction I had was falling asleep from the Piriton ... out for the count in a busy noisy infusion room! ... and I am sure that Piriton did not help my tiredness for a few days after which I know can be usual with Rituximab when you have just had them. I slept the best part of five days! Then fine. Rituximab did not have an immediate effect on me and hard to tell at first as I had my knees injected two weeks later as they were huge. I felt a general difference and much improved after 9 weeks of the second of the two infusions. Rituximab and Anti-TNF's (Enbrel and Humira and that family of meds) work on the body quite differently so no reason to think at all you are going to have a similar reaction to Rituximab with those. NK x
Hi everyone thought I'd leave a quick update. I heard back from the rheumy nurse who said sometimes you can experience a site reaction if you inject in a place that's previously been injected in. I had no reaction last week when I changed legs but have another again this week after I injected my right leg again (the leg that had the reaction initially) So I guess it's just one of those things I'll have to get used to. I don't inject in exactly the same place every week but as time goes on I suppose the chance of hitting the same spot reduces. Anyway thanks again for all your help . Xx
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