Humira side effects

toady
toady Member Posts: 1,132
edited 19. Dec 2015, 08:38 in Living with Arthritis archive
As a soon-to-be starter of Humira - can I canvass for side-effects please.

Having been assured a) that 'we don't tend to see nausea as a side-effect' (nurse) and b) 'if you have tolerated one anti-TNF you should be fine on another' (dr), I am currently panicking myself anyway, over the side-effect leaflet. :( I am usually quite good at not doing this, but I wasn't prepared for quite how high up nausea is on the Humira list (more than 1 in 10 people) compared to Enbrel (doesn't really seem to figure at all).

Even so, I know some people do get nausea with Enbrel, and I didn't, so if the stats were much the same I would probably talk myself into an attitude of 'I'll be fine'.

However over 1 in 10 does seem a lot; I mean over 1, is that 2, 3, 4 people in 10.. & if 'we' supposedly 'don't see people with nausea' then where are they all? In one very unfortunate concentration somewhere where 10/10 suffer?! Plus I know someone personally who did have problems so that is not a good thought right now.

Basically - if you DID have nausea with humira, could you kindly post so I can get a sort-of idea of numbers here.. not scientific I know but right now I've got a week to nerve myself up & my bottle is definitely going. :(
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Comments

  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Don't go overboard with the panic! I've had zero side effects with Humira, absolutely nothing, it'e been fine and dandy and once it took effect, pretty useful stuff./ Enbrel left me with huge (I mean huge) red injection site reactions, knocked me ill for a day after the dose nad left me wheezing and itchy...I guess that sort of damns the 'if you are ok with one TNF you will be with others theory.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    This is my 8th year on humira and I can honestly say that I've had absolutely no side effects at all. It made a huge difference to my quality of life, it worked quite quickly, and only now is it beginning to lose its efficacy, to the point where I'll probably have to kiss it goodbye & start a new drug.

    Good luck with it - it's been a good friend to me.
  • toady
    toady Member Posts: 1,132
    edited 30. Nov -1, 00:00
    Thank you both.

    What I am annoyed with myself for, is that I dropped the ball doing my research. :( Last time I chose Enbrel, as it stood out way ahead of the others. Because of that, and from my memory that I deemed 'the other 3' to be much of a muchness, I didn't re-research them this time.

    Comparing the patient info leaflets this morning only Humira has nausea as a very common, & a whopping 49 'common' (1 in 100) poss effects - many of which are also in the fields I'm most worried about.

    Simponi only has 29 common and nothing bad in the very common, and Cimzia only has 13 common listed & no very common at all.

    On that basis, if I had looked into them all, I would have picked out Cimzia without a doubt - Dr wouldn't have much cared which I wanted, & all fine. If I could go back & choose again, I 100% would. But with my first lot of Humira in the fridge it's a different matter. If I put my foot down and say I want to change they are not going to be happy & I don't know if they would insist I try at least one. :(

    As I said before I'm not a leaflet-panicker & I airily dismiss all the more scary effects, don't read what people say on the net, & so on, but these are the leaflets you get with your meds and the figures are presumably sound & there for a reason.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    I've had humira since 2008 and never had nausea.

    I do sometimes et wiped out the day after an injection but this doesn't happen all the time.

    I started having trouble with my lungs after a few years so have frequent breaks.

    My current side effect is terrible itching. When I take an injection I start scratching, neck, breasts, lower legs and ankles and feet. I have been given a cream to treat this but find I'm scratching madly before I get round to putting it on and because I can't reach my feet I rely on my Daughter to do this for me.

    So I've been told I can stop taking it and try another but it really did work on the pain and inflammation, its just the side effects I'm struggling with.

    I hope it helps with the pain as much as it helped me.

    Elizabeth , xx
  • toady
    toady Member Posts: 1,132
    edited 30. Nov -1, 00:00
    Thanks very much TK. It is certainly nice to hear people having no nausea but if only you knew which would apply to yourself! As I say all the other side effects I can cope with or if not, like your itching, well they can be addressed if they arise.

    Everything official I've read so far points at Cimzia being far less of a nausea culprit, but if I strayed off into personal accounts on the net there'd be nauseous Cimzia people all over the place I have no doubt. :roll: Choose the lesser risk is all you can do with any side-effect, and at the moment Humira looks like scary odds to me even with people like yourselves doing ok. I hate this gun-to-your-head side of medication - suck it & see (hateful phrase) is all very well but by the time you've sucked & seen it's too late. One bad experience & they will have a job getting me to take any drug ever let alone this one. :(
  • barbara12
    barbara12 Member Posts: 21,234
    edited 30. Nov -1, 00:00
    toady Im glad to see other have been able to help..I got a bit mixed up in the cafe and thought you already had side effects :? ..just ignore it... :shock: you are not on your own worrying, its a big thing..wishing you well with it..x
  • toady
    toady Member Posts: 1,132
    edited 30. Nov -1, 00:00
    That's ok barbara so easy to read something one way.. & doesn't matter in the slightest thanks for posting & your kind thoughts, & for the tea that's the main thing! :D
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    toady wrote:
    Thank you both.

    What I am annoyed with myself for, is that I dropped the ball doing my research. :( Last time I chose Enbrel, as it stood out way ahead of the others. Because of that, and from my memory that I deemed 'the other 3' to be much of a muchness, I didn't re-research them this time.

    Comparing the patient info leaflets this morning only Humira has nausea as a very common, & a whopping 49 'common' (1 in 100) poss effects - many of which are also in the fields I'm most worried about.

    Simponi only has 29 common and nothing bad in the very common, and Cimzia only has 13 common listed & no very common at all.

    On that basis, if I had looked into them all, I would have picked out Cimzia without a doubt - Dr wouldn't have much cared which I wanted, & all fine. If I could go back & choose again, I 100% would. But with my first lot of Humira in the fridge it's a different matter. If I put my foot down and say I want to change they are not going to be happy & I don't know if they would insist I try at least one. :(

    As I said before I'm not a leaflet-panicker & I airily dismiss all the more scary effects, don't read what people say on the net, & so on, but these are the leaflets you get with your meds and the figures are presumably sound & there for a reason.
    The reason that some medications like Cimzia don't have very common side effects listed is because they're newer in comparison to Humira. I'm currently taking cimzia and for the first couple of months I would get regular phone calls from the drug company asking about any side effects so they could log them onto their system.

    I've personally never had any nausea on any TNF drugs, and I'm currently on drug #6
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    tkachev wrote:
    I've had humira since 2008 and never had nausea.

    I do sometimes et wiped out the day after an injection but this doesn't happen all the time.

    I started having trouble with my lungs after a few years so have frequent breaks.

    My current side effect is terrible itching. When I take an injection I start scratching, neck, breasts, lower legs and ankles and feet. I have been given a cream to treat this but find I'm scratching madly before I get round to putting it on and because I can't reach my feet I rely on my Daughter to do this for me.

    So I've been told I can stop taking it and try another but it really did work on the pain and inflammation, its just the side effects I'm struggling with.

    I hope it helps with the pain as much as it helped me.

    Elizabeth , xx




    Has no-one suggested an anti-histamine, Elizabeth? I sometimes got quite bad itching on one of the DMARDS, and was prescribed one, which helped enormously, especially at night, as it helped me sleep too.
  • toady
    toady Member Posts: 1,132
    edited 30. Nov -1, 00:00
    As5567 wrote:
    The reason that some medications like Cimzia don't have very common side effects listed is because they're newer in comparison to Humira. I'm currently taking cimzia and for the first couple of months I would get regular phone calls from the drug company asking about any side effects so they could log them onto their system.

    I've personally never had any nausea on any TNF drugs, and I'm currently on drug #6

    Hmm. That's a very interesting point re the newness etc, as someone has just raised to me the similar point, that far more people are on Humira than the other 2. I hadn't taken that into consideration - although logically the proportions of reported side effects should be roughly accurate even if there are less figures available.

    Apart from their newness & the other considerations, do you know if that affects the cheapness of Humira.. it crossed my suspicious mind that that's a factor in it being their 'favourite'. Though I get that they will always think older is better for valid reasons.

    I am still chewing this over as it does boil down to the fact that choosing a drug with a 'very common' reported nausea risk is a stupid thing for a nausea-phobe to do. I can do nothing much for the weekend so it's down to juggling the options. :?

    Thank you for your input that you haven't been nauseous - it's definitely the fact that most of the first-person reporting seems positive so far, nurses/patients etc, compared to the stats, which is confusing me.
  • toady
    toady Member Posts: 1,132
    edited 30. Nov -1, 00:00
    Just answered my own question, well google did, yes cimzia is more expensive. So I don't think asking for a switch would go down that well on those grounds alone. One other small point, if I read correctly (briefly) cimzia is one of the anti-tnf's that can be taken without mtx, well more successfully so than the others (?) and as I think me & mtx are heading for a falling out, that might be one point in cimzias favour as far as the docs are concerned.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    I took humira on its own, since MTX put me in hospital with respiratory problems. My rheumy took the view that if it was doing a good job 'solo,' there was no need to add in another drug. This continued until almost 18 months ago when hydroxychloroquine was added in when it became clear that humira was losing its power.
  • toady
    toady Member Posts: 1,132
    edited 30. Nov -1, 00:00
    Thanks for that :) it says in my olde leaflets from the first time round that yes you can take the others without, but cimzia seems to be the one they are least reluctant to give you by itself.

    Re expense, I remembered after posting that when I started anti-tnf I was given the choice of any & all of 'em, & I don't recall them trying to palm any particular one on me - so if I'd said 'cimzia please' then, that would have been ok so I don't see the difference.

    At the moment I'm leaning towards ringing up, apologising for not doing my researches, can I change my mind sorry, & see what happens. I'm ok with standing firm (toads can be quite unmoveable ;)) the problem is how many hoops I'd have to go through, while now not feeling any too good. Own fault. :roll: I may be leaning another way by Monday though.
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    toady wrote:
    Just answered my own question, well google did, yes cimzia is more expensive. So I don't think asking for a switch would go down that well on those grounds alone. One other small point, if I read correctly (briefly) cimzia is one of the anti-tnf's that can be taken without mtx, well more successfully so than the others (?) and as I think me & mtx are heading for a falling out, that might be one point in cimzias favour as far as the docs are concerned.
    I would ask if cimzia could be prescribed, plus the drug company give the NHS a "free trial" the first 3 months of treatment are free of charge, which is how long they say the medication should take to work. But there are also many unknowns with cimzia, it works in a different way to other tnf's so that's possibly why it's lacking much information on side effects. I can't remember exactly how it works differently.

    All TNF drugs can be taken without Methotrexate, I'm no longer taking it myself as I just can't get away from the nausea and it adds no benefit to my treatment. The main reason to be given meth along side tnf drugs is that its thought (Although not proven) to help prevent the development of antibodies which is the #1 cause of treatment failing after a couple of years.

    We're spoilt for choice with TNF drugs these days, but Enbrel and Humira do seem to be the first choice, probably because there is more data on those drugs now and so many people have had great success with them.
  • toady
    toady Member Posts: 1,132
    edited 30. Nov -1, 00:00
    Thanks v much indeed. That's v interesting re the funding. At the moment I'm still wavering very much between taking Humira & praying I'm one of the lucky non-reactors, or going with my fear & asking to switch. Chiefly because I've felt grim long enough now that the thought of stringing things out any longer waiting for a possible switch is not appealing.

    The other thing with Cimzia is I've seen a few people say it's only effective for a couple of years whereas Humira seems on average to be longer before people tail off. Also I cracked (I know, I know) and did look up a few accounts of how people get on with Cimzia and yes of course there are tales of nausea on that including one person who said the nurse actually told them in advance they 'may well feel sick & dizzy' after their injection. Hearsay I know, but still, not encouraging. Oh, the indecisiveness. :roll:
  • dreamdaisy
    dreamdaisy Member Posts: 31,552
    edited 30. Nov -1, 00:00
    I've been on humira for years. Nausea? None. Any other side effects? No. Any physical benefit? None. Disease controlled? According to the bloods yes. Woo-hoo. I hope you will be one of the lucky ones that gains a benefit that can be felt. DD
  • barbara12
    barbara12 Member Posts: 21,234
    edited 30. Nov -1, 00:00
    Hello Toady are you any nearer now, this forum is so brilliant for info and advice..good luck..x
  • toady
    toady Member Posts: 1,132
    edited 30. Nov -1, 00:00
    Thank you very much indeed for calling in daisy, and thank you Barbara for your kindly thoughts, at this point the decision has been made & the die cast &c &c - will update on the outcome in due course, thanks again to all posters for your input & support. xxxx
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    theresak wrote:
    tkachev wrote:
    I've had humira since 2008 and never had nausea.

    I do sometimes et wiped out the day after an injection but this doesn't happen all the time.

    I started having trouble with my lungs after a few years so have frequent breaks.

    My current side effect is terrible itching. When I take an injection I start scratching, neck, breasts, lower legs and ankles and feet. I have been given a cream to treat this but find I'm scratching madly before I get round to putting it on and because I can't reach my feet I rely on my Daughter to do this for me.

    So I've been told I can stop taking it and try another but it really did work on the pain and inflammation, its just the side effects I'm struggling with.

    I hope it helps with the pain as much as it helped me.

    Elizabeth , xx




    Has no-one suggested an anti-histamine, Elizabeth? I sometimes got quite bad itching on one of the DMARDS, and was prescribed one, which helped enormously, especially at night, as it helped me sleep too.

    Thank you. I have booked an appointment with my GP and will ask about this. The itching is currently unbearable!

    Elizabeth x
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hope your GP can help, Elizabeth - it was chlorphenamine I was prescribed.
  • toady
    toady Member Posts: 1,132
    edited 30. Nov -1, 00:00
    Afternoon all..

    Well I got myself onto the Humira, don't ask how but with your help managed to nerve myself, however no joy yet.

    I know you can't expect overnight success & that's fine but the disappointing thing was, I did feel better after the first shot. Not miraculous or anything but noticeably cooler/less swelling, didn't feel I needed painkillers. But after the 2nd & 3rd, nothing at all. :? Have had to have a steroid jab since to tide me over (also not working as far as I can tell :roll: ) so I am getting a little fretful as if Humira does nothing I'm in a worse position still for starting something else - as at least my Enbrel was still doing something while I was on it.

    I don't know whether to take the first-shot results as a total flukey thing & not to get my hopes up? As I did, obviously, after that. :( Drs not much help of course 'have to wait & see', though they did say they didn't expect me to see results after 2 doses & so a steroid was a good idea.

    I know people have said it took a while for them but could anyone let me know if by 'taking a while' you mean to have the full effect, or to have ANY effect? As I say I'm at the 5 week, will have jab no 4 shot next week mark. Enbrel worked for me overnight, I can't seem to find out if Humira is known to take a bit longer in general even allowing for differences between people's reaction. Thanks.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    My humira worked quickly, though not overnight like your enbrel. I remember feeling so much better after the first couple of injections.

    If you feel some improvement now, I'm not sure how you will be able to tell if it's the humira or the steroid. Either way, I hope one of them works for you, or better still, both.
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    I swapped from Enbrel to Humira and it took about three months for me to really get the benefit. Enbrel worked really quickly for me but I reacted badly to it. The registrar who talked to me about the Humira when I, like you, felt unsure it was going to work after the instant success of Enbrel, explained to me that my body was in a state of confusion of having had the Enbrel in there and then swapping to the Humira. I was told to wait for a few months longer so I did and hey presto, it does the trick now in all but the most extreme of circumstances. I hope it starts to work for you soon.
  • toady
    toady Member Posts: 1,132
    edited 30. Nov -1, 00:00
    Big thanks for both those replies. All I really want at this point is a tiny sign - any full benefit can wait indefinitely after that, I really don't want to start over the state I'm currently in.

    I doubt the steroids are going to do enough to mask any Humira effect, as it stands. I'm half hoping the fact the steroids aren't doing anything obvious (they usually do for me) shows I'm taking a bit of getting under control, sounds daft, but then I can theorise that the Humira has a lot to do & help explain the slow start. Plus the Enbrel switchover effect as you say LV. At what point would you say you felt anything at all, if I can press you further? Thanks a lot.
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    I felt something after a couple of months but it took abour 4 months to really get to the point where I felt I had control from one fortnightly injetion to the next if that makes sense - it crept up, I got a bit of benefit but it didn't last and over time it started to last and get me to the next dose without feeling it had run out at some point. I hope that starts doing something soon for you.

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