Enbrel

Well, started Enbrel last week, done second injection this week and so far, no side effects, other than seem to get very tired around mid-afternoon. no rash or irritation at injection site, felt a bit woozy after doing injection but didn't last long and no stinging!! So far so good. Just hope I see an improvement soon. Have been told it can take upto 12 weeks to start working so here's hoping.

Thank you Sybil, I hope so. I have heard that it can make a huge difference to some people so fingers crossed.

sybil said:

Just want to wish you luck with Enbrel Tasha. I've noticed that folk report ongoing improvement i.e. that things can get better and better even after that 12 week mark.

My fingers are crossed for you, Tasha. If you are very lucky, you may start feeling some changes fairly soon, but to really know what it’s going to do you need several months. What Sybil described about ongoing improvement happened to me: I had steady improvement from about the third month to the ninth. Of course, that may not have been all because of Enbrel: I have a suspicion that once I started feeling better, I started moving more which helped as well. Whatever the cause, feeling better is where you want to be!

Thank you Seenie, I will let you know how it goes!

Seenie said:

My fingers are crossed for you, Tasha. If you are very lucky, you may start feeling some changes fairly soon, but to really know what it's going to do you need several months. What Sybil described about ongoing improvement happened to me: I had steady improvement from about the third month to the ninth. Of course, that may not have been all because of Enbrel: I have a suspicion that once I started feeling better, I started moving more which helped as well. Whatever the cause, feeling better is where you want to be!

Good luck! I think that the hardest part for me was getting onto a good schedule for my injections. I hate doing them, and always had to talk myself into it! It seems like you have a good start. Hopefully, you will begin to notice little things hurting a little less. :slight_smile:

Thanks,I hate doing the injections too, mtx on a Thurs and enbrel on a Mon, I have to psyche myself up to it but if it works then its worth it.

GrumpyCat said:

Good luck! I think that the hardest part for me was getting onto a good schedule for my injections. I hate doing them, and always had to talk myself into it! It seems like you have a good start. Hopefully, you will begin to notice little things hurting a little less. :-)

I'm lucky in that I don't need the mtx....and keep your fingers crossed, some of us got really quick results with Enbrel. I'm not the only one who had fast results--it's not typical, but it can happen. My psoriasis went away on my scalp after only a few weeks on Enbrel, but my stiffness and fatique went away after the first shot. You might get a little site reaction. Seenie kept warning me of that...it was after about the 4th shot I got a big pink blotch, but I don't get them anymore. Only SE I have is being a little hyper--can get by on less sleep, so that's a good SE as I see it!!! Good luck! I hope we all have long lasting results with our biologics!

Thank you. Not noticed any changes yet but then no side effects either so we will see. fingers crossed!

Grandma J said:

I'm lucky in that I don't need the mtx....and keep your fingers crossed, some of us got really quick results with Enbrel. I'm not the only one who had fast results--it's not typical, but it can happen. My psoriasis went away on my scalp after only a few weeks on Enbrel, but my stiffness and fatique went away after the first shot. You might get a little site reaction. Seenie kept warning me of that...it was after about the 4th shot I got a big pink blotch, but I don't get them anymore. Only SE I have is being a little hyper--can get by on less sleep, so that's a good SE as I see it!!! Good luck! I hope we all have long lasting results with our biologics!

Hi Seenie and Happy New Year. Just been reading through your message again re: Enbrel. I seemed to notice a slight improvement after about 8 weeks but nothing to jump up and down and shout about! I have been taking Enbrel now for 4 months and have had to stop a couple of times because of bad cold and eye infection. Had no side effects other than a site rash developed after the third injection and each week got worse until it became the size of my palm, but that has now subsided to virtually nothing each week, so must be getting used to it. I have been having a bit of a flare up of swelling and pain, particularly in my hands, they have always been bad. On the plus side the fatigue has gone though. Still get tired by late afternoon, but not that dreadful fatigue! Saw my specialist last week and she warned that if I do not see a significant improvement I may have to stop Enbrel, so was reassured that you noticed an ongoing improvement after 3 months. I hope I do too, I was really banking on this medication making a difference for me. Hope you are well and and pain-free as possible. The cold weather here at the moment does not help either!!

Seenie said:

My fingers are crossed for you, Tasha. If you are very lucky, you may start feeling some changes fairly soon, but to really know what it's going to do you need several months. What Sybil described about ongoing improvement happened to me: I had steady improvement from about the third month to the ninth. Of course, that may not have been all because of Enbrel: I have a suspicion that once I started feeling better, I started moving more which helped as well. Whatever the cause, feeling better is where you want to be!

Hi Tasha, hope you don't mind me adding my ten pence worth. I wanted to reply because you're in the UK and unless you have a financially bouyant local health authority you are unlikely to be offered a second biologic, without special funding, if Enbrel doesn't work for you. So before you tell the docs it's doing nothing please be sure this is the case.

I started with Humira, I had no side-effects at all, and I went breezing in for my twelve week review and announced it was doing a big fat nothing! It was immediately withdrawn and I was told in no uncertain terms "it's one shot only at a biolgic, you've had yours, it hasn't worked so that's it all we can offer you now is palliative care". I cried!!!!!! And then I got angry and was able to persuade my consultant to make a special funding request (twelve months ago) for a second biologic which, thankfully, does something but not everything. I've been told that with the current NHS funding crisis I'd be unlikely to have got this funding in 2015.

With the Humira I was so focused on the pain in my shoulders which hadn't improved that I think (in hindsight) that I missed the fact my knees had stopped hurting ..... so maybe, just maybe it was starting to work after all.

So I guess what I'm saying is that the current NICE guidelines are stacked against us so before you shoot your foot off with your Enbrel be certain.

Wishing you all the best.

Hi Sybil, nice to hear from you again. Have just replied to Jules. I had not realised that this was the case, no one mentioned it!! So I will tread carefully and be careful what I say. I am not seeing her again until May so I should have noticed whether it is working by then.



sybil said:

Jules makes an important point. I think you do have to tread carefully.

I know that theoretically we have 3 months in which to 'pass or fail' but looks like you've had a little longer, just as I did with Humira. People here have said that bios can take more than 4 months to really show what they can do and some UK consultants don't seem to take much notice of what is or isn't going on around the 3 - 4 month mark, presumably because they want their patients to have a longer trial period.

My impression is that my rheumy department would try to get me on a different biologic if Humira stopped working. I've done a little digging without actually asking directly so I'm not 100% sure. It might be a good idea to put out some feelers ..... playing up the positives associated with Enbrel while innocently asking what the next step would be if it stopped working 'in the future'.


Hi Jules, Have just left a long message to you and it seems to have disappeared, so here goes again (probably there will be two now!!), n Anyway, I had not realised that this was the case with biologics so thank you for your advice. I will be careful what I say when I see my consultant in May. I should have noticed if it has made any difference by then. But as you say, you do not always notice when you are NOT in pain, and now I think about it, the pain in my neck has improved and also I no longer get pain in my legs in bed at night so it is doing something!! Thanks again for your help.
Jules said:

Hi Tasha, hope you don't mind me adding my ten pence worth. I wanted to reply because you're in the UK and unless you have a financially bouyant local health authority you are unlikely to be offered a second biologic, without special funding, if Enbrel doesn't work for you. So before you tell the docs it's doing nothing please be sure this is the case.

I started with Humira, I had no side-effects at all, and I went breezing in for my twelve week review and announced it was doing a big fat nothing! It was immediately withdrawn and I was told in no uncertain terms "it's one shot only at a biolgic, you've had yours, it hasn't worked so that's it all we can offer you now is palliative care". I cried!!!!!! And then I got angry and was able to persuade my consultant to make a special funding request (twelve months ago) for a second biologic which, thankfully, does something but not everything. I've been told that with the current NHS funding crisis I'd be unlikely to have got this funding in 2015.

With the Humira I was so focused on the pain in my shoulders which hadn't improved that I think (in hindsight) that I missed the fact my knees had stopped hurting ..... so maybe, just maybe it was starting to work after all.

So I guess what I'm saying is that the current NICE guidelines are stacked against us so before you shoot your foot off with your Enbrel be certain.

Wishing you all the best.