Enbrel reaction

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bgranter
bgranter Member Posts: 6
edited 25. Jun 2010, 05:15 in Living with Arthritis archive
I have been having Enbrel injections for 5 weeks, each week feeling a tiny bit nauseous straight after the injection, but nothing terrible. I've also had a very itchy rash on one leg. After the 5th injection I had a bad reaction: felt very sick, lethargy, sweating, BP raised, pulse 39 and heart seeming to thump in my chest. Strangely, my CRP and ESR (measures of inflammation) have gone right down over the 5 weeks but my pain was absolutely no different. Has anyone else had any of this happen? My GP rang the consultant who stopped the drug immediately. I'm wondering what will happen next. Do they tend to try another anti TNF if you get a bad reaction?

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  • frogmorton
    frogmorton Member Posts: 29,419
    edited 30. Nov -1, 00:00
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    Hi Bgranter

    Welcome from me

    Sorry I cant help on this one, but lots of other people will be able to help I'm sure when they look in.

    Just wanted to offer my support to you. I think your reaction was very scary and safer to be off it :shock:

    Others on here have tried more than one for sure, but why one failed I dont know...

    Hope you find out soon

    Love

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 24. Jun 2010, 12:17
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    I've been on humira for nearly a year, no side-effects that I am aware of, my inflammation levels dropped immediately to single digits but the pain did not go. I was on crutches when I started it and have remained on them. For some people these drugs work miracles, for others they work in that they reduce inflammation. Five weeks is not that long, side-effects can, and sometimes do, reduce.

    These are toxic drugs, hence the monitoring with blood tests. Be conscientious with those, very conscientious, because I was took Enbrel for a few months and then things turned very nasty. (Again, inflammation levels were greatly reduced, the pain not.) That then led to months with nothing until I re-started methotrexate followed by the humira - not an experience I wish to repeat. I wish you well. Dreamdaisy
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
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    Hi there

    Sorry to hear your bad reaction to Enbrel. I would think they would move you onto another one as the inflammation levels did drop after 5 weeks which is good. If you'd stayed on it, the pain probably would have become less too.
    Take care
    Janie
  • bgranter
    bgranter Member Posts: 6
    edited 30. Nov -1, 00:00
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    janie68 wrote:
    Hi there

    Sorry to hear your bad reaction to Enbrel. I would think they would move you onto another one as the inflammation levels did drop after 5 weeks which is good. If you'd stayed on it, the pain probably would have become less too.
    Take care
    Janie

    Actually the inflammation levels had dropped from 67 to 24 due to some herbs I was taking before the Enbrel. Then the levels dropped to 7 when I started the Enbrel, not after 5 weeks. Its very odd, isn't it, that the levels can be as low as 7 and I had no improvement in pain. I suppose some of the pain is damage after 42 years but not all of it, I'm convinced, because I get swelling and heat. Before you ask, the herbs were from Strauss Midlands which acts as an agency for Strauss in Canada. They have a website.
  • bgranter
    bgranter Member Posts: 6
    edited 30. Nov -1, 00:00
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    dreamdaisy wrote:
    I've been on humira for nearly a year, no side-effects that I am aware of, my inflammation levels dropped immediately to single digits but the pain did not go. I was on crutches when I started it and have remained on them. For some people these drugs work miracles, for others they work in that they reduce inflammation. Five weeks is not that long, side-effects can, and sometimes do, reduce.

    These are toxic drugs, hence the monitoring with blood tests. Be conscientious with those, very conscientious, because I was took Enbrel for a few months and then things turned very nasty. (Again, inflammation levels were greatly reduced, the pain not.) That then led to months with nothing until I re-started methotrexate followed by the humira - not an experience I wish to repeat. I wish you well. Dreamdaisy

    As I said above, this lessening of inflammation but not pain is very strange. I used to take Leflunomide and that worked brilliantly....low levels and hardly any pain...but it seemed to cause heart symptoms and I had a heart attack so I stopped taking them. I had months with nothing before the herbs and was in a lot of pain. Incidentally I was due to have a new hip in Jan but had a heart attack instead. Now they won't do the hip 'til the heart is sorted!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oooooh, tough and double tough! I tried leflunomide a few years ago and couldn't move for headaches. The problem with these meds is that what works for one does not necessarily work for another. It is so much trial and error - sometimes that is worse than the disease we fight. What form of arthritis do you have? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bgranter
    bgranter Member Posts: 6
    edited 30. Nov -1, 00:00
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    I have had RA for 42 years. I was 20, now 62. I had put so much hope into anti TNF, that was the trouble. I should have known. When you have hope it seems to smack you in the face but you get relief when you are least expecting it. It took me a long time to agree to go on it because I was so scared of getting cancer, then it didn't work!! Have you heard the news this morning? It said on the main news that people are going to be able to change anti TNFs if one doesn't work. It said NICE had previously prevented trying more than one. I think there must have been some fiddling going on as lots of people seem to have tried more than one. Did you know that RA affects the heart? I didn't know until my first heart attack when the cardiologist told me. But then some of the drugs affect the heart too. Anyway, I'm having a stent in an artery next week so then I can have the hip done 3 months later. Trouble is the knee seems to have become unstable on the same side as the hip so I don't know if they will do it after all.Is yours RA?
    Just found this: http://news.bbc.co.uk/1/hi/health/10410140.stm
    dreamdaisy wrote:
    Oooooh, tough and double tough! I tried leflunomide a few years ago and couldn't move for headaches. The problem with these meds is that what works for one does not necessarily work for another. It is so much trial and error - sometimes that is worse than the disease we fight. What form of arthritis do you have? DD
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Mine's PA, and it's running riot at the moment as the humira appears to have packed up. This was my third anti TNF and I doubt very much that I shall be funded for a fourth. For each attempt I have been part of a research programme whcih has been the way in to funding for me. I never once thought I would get cancer, and even if I did, so what? Something's going to get you. What is immaterial.

    I learned many years ago never to get my hopes up about a new drug. Cures do not exist, the meds only alleviate symptoms and slow the progress of the disease. You have only been on enbrel for five weeks, and the reduction of inflammation levels isn't that great yet. Hang on in there, I suspect there is more it can do for you, it has made a good start, but do the bloods regularly. Are you weekly or fortnightly for those? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bgranter
    bgranter Member Posts: 6
    edited 30. Nov -1, 00:00
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    But they've taken me off it because of the bad reaction so I can't hang in there. The reduction of inflammation levels was great, it just didn't get reflected in pain levels. Unfortunately.
    I'm sorry you have had such bad luck with antis. Seems like they are pros not antis in your case. Sorry to joke about it. Did you really not consider cancer? It's the name 'Tumour Necrosing Factor' that scared me. If it isn't necrosing the tumours the logic is that you will GET tumours...though that is all in theory of course. I like your philosophy that something is going to get you and it doesn't matter what. Very cool, Dreamdaisy. Yes, I realised when I read that article that they get round it by calling it research. I'm part of a research project too. I guess we all are.
    dreamdaisy wrote:
    Mine's PA, and it's running riot at the moment as the humira appears to have packed up. This was my third anti TNF and I doubt very much that I shall be funded for a fourth. For each attempt I have been part of a research programme whcih has been the way in to funding for me. I never once thought I would get cancer, and even if I did, so what? Something's going to get you. What is immaterial.

    I learned many years ago never to get my hopes up about a new drug. Cures do not exist, the meds only alleviate symptoms and slow the progress of the disease. You have only been on enbrel for five weeks, and the reduction of inflammation levels isn't that great yet. Hang on in there, I suspect there is more it can do for you, it has made a good start, but do the bloods regularly. Are you weekly or fortnightly for those? DD
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