hooray ...i think! anti tnfs

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lizzieuk1
lizzieuk1 Member Posts: 302
edited 5. May 2013, 08:57 in Living with Arthritis archive
Well saw rheumy for emergency appt post my miscarriage as been in a terrible flare, not my usual rheumy but he was lovely and has suggested I am now able to go on anti tnf! Has only taken 2 years post having my son! Agreed mtx not working for me and that 9 IM steroids is perhaps telling I need another option.
So just waiting for him to chat to my usual rheumy then will send letter to my gp for the prescription.
I think humira is most popular as first use but anyone got any opinions on that as I do have a choice of that or enbrel??

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  • DebbieT
    DebbieT Member Posts: 1,033
    edited 30. Nov -1, 00:00
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    Hi,

    That's great news, congratulations!! :D

    I've still not been given Anti TNF's myself so I can't offer more than my congratulations & hope that they work well for you!! I hope they contact your GP asap for you too.

    I'm sorry to read of your miscarriage (((Lizzie)))

    Take care.x
    Healing Hugs
    Debbie.x
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
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    I didn't think it was a gp that could give prescription for anti tnfs,maybe you are a different health authority to mine. Mig
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Hi Lizzie
    Sorry I dont have any advice, but I do want to wish you well with the meds...this could be a new beginning for you...xx
    Love
    Barbara
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
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    Hi Lizzie, good news if you are moving to anti tnfs but I think you have to be assessed a couple of times a month apart. You need to score so many points on the DAS score. Can't remember exactly but it's something like 5.2. You can prob check this out online somewhere.
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -1, 00:00
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    mig wrote:
    I didn't think it was a gp that could give prescription for anti tnfs,maybe you are a different health authority to mine. Mig

    ah no sorry that read wrong I meant he will write to gp giving prescription for anti tnf so gp can carry out prescription for me iyswim
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -1, 00:00
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    salamander wrote:
    Hi Lizzie, good news if you are moving to anti tnfs but I think you have to be assessed a couple of times a month apart. You need to score so many points on the DAS score. Can't remember exactly but it's something like 5.2. You can prob check this out online somewhere.

    Yes I am aware of the guidelines, this is my second appt where I have had my das done and has been over the reqd score both times, have also tried 3 dmards, so I am now eligible for the funding under nice guidelines. :)
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -1, 00:00
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    barbara12 wrote:
    Hi Lizzie
    Sorry I dont have any advice, but I do want to wish you well with the meds...this could be a new beginning for you...xx
    Thanks Barbara I really am hoping this will be the turning point for us in 2013 has been a pretty horrendous year so far!
  • trepolpen
    trepolpen Member Posts: 504
    edited 30. Nov -1, 00:00
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    Hi Lizzie

    been on enbrel , worked very well but had problems with injection site reaction , not tried humira but loads of people do well on both

    started Golumamab this year myself & so far very good , hope the anti-tnf works well for you which ever one you decide
  • CJHunter
    CJHunter Member Posts: 1,038
    edited 30. Nov -1, 00:00
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    Hiya, I started on Humira 2 weeks ago and have had my second lot of injections. It has started working on my skin (psoriasis) and It has had a noticeable effect on stiffness so fingers crossed.

    Hoping it will be good for you too.

    All the best xx
    Clare xxeyeore-1.jpg
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
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    lizzieuk1 wrote:
    salamander wrote:
    Hi Lizzie, good news if you are moving to anti tnfs but I think you have to be assessed a couple of times a month apart. You need to score so many points on the DAS score. Can't remember exactly but it's something like 5.2. You can prob check this out online somewhere.

    Yes I am aware of the guidelines, this is my second appt where I have had my das done and has been over the reqd score both times, have also tried 3 dmards, so I am now eligible for the funding under nice guidelines. :)

    Sorry didn't realise, enjoy the anti tnfs then!
    p.s.
    I take a half-dose of Enbrel which works fairly well. I like it. Don't know much about Humira I'm afraid.
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
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    Unsure wrote:
    Enbrel was good for me for a few years then switched to Humira which did nothing, I was given a choice at the time.

    Never had any injection site reaction with either.

    I did with Enbrel and they switched the type of injection. I don't get one now as long as only inject in my legs.
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -1, 00:00
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    Thanks all, looks like its pot luck then!
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
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    Congrats and good luck Lizzie
    How am I gonna be an optimist about this?
  • toady
    toady Member Posts: 2,132
    edited 30. Nov -1, 00:00
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    Hi Lizzie, I chose enbrel over the other anti-tnfs, it had the slightly less long list of possible side effects compared to say humira, and is out of the body quicker than the other tnfs which is a good things as far as I'm concerned (ie looking on the pessimistic side it's out of your system quicker if you have a problem, or if you want to come off it for another reason) - however it also means if you stop it your symptoms are liable to return more quickly as it is only acting from week to week. My rheumatologist had only just started putting patients on golimumab so I thought I'd hang fire on that one in favour of one of the older ones.

    I had one minor injection site reaction with enbrel and then nothing really, and no side effects I'm aware of at all, although unfortunately I feel that after a year I've probably had the best out of it and my symptoms are creeping so I may be on my way off it again.

    Good luck with your choice.
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
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    I'd forgotten about all those things Toady - they are all reasons why I'm on it too! Thanks for the reminder!
  • toady
    toady Member Posts: 2,132
    edited 30. Nov -1, 00:00
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    Glad to hear you're doing well on it :) (I assume), how long have you been on it & had you tried another anti-tnf?
  • salamander
    salamander Member Posts: 1,906
    edited 30. Nov -1, 00:00
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    I've been on it for about a year. I was on Cimzia which made me ill and didn't work. Side effects are minimal, if any at all but I only take a half dose plus pred.
  • toady
    toady Member Posts: 2,132
    edited 30. Nov -1, 00:00
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    Thanks, interesting to hear how people are doing on enbrel - long may it continue to help you. Also interested in your experience of cimzia, it wouldn't be my first choice if I have to switch I do seem to hear more bad things about it than some of the others (though that's a random sample i grant).

    lizzie - any decision in the offing yet? :)
  • anniek
    anniek Member Posts: 39
    edited 30. Nov -1, 00:00
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    Hi I was on Enbrel for 7 years worked really well for 6 and a half years ,I choose Enbrel for the same reasons less side effects have now switched to Cimzia had my first 2 injections on wednesday ,hope you do well on your meds :)
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Enbrel? Oh yes, my favourite anti TNF to date - not. I'm aware that it works well for more than a few so I wish you good luck and, if you choose it, I hope it's the one for you. My GP has nothing to do with my prescriptions for humira and meth which is why I have to apply for a flu jab - those meds are not on my GP records. DD

    PS What does 'iyswim' mean? Yup, I'm old. :wink:
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • toady
    toady Member Posts: 2,132
    edited 30. Nov -1, 00:00
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    ^ it's "if you see what i mean" :)

    Good luck with the cimzia, anniek, sorry didn't mean to sound negative about it, just tend to dwell on one bad thing i hear rather than all the good (born pessimist).
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Thank you for the interpretation, today. I think it a courtesy to write things in full so that people can more easily understand what you are trying to communicate: text-speak (like any form of short-hand) has its place but formal, public writing isn't it.

    Regarding the meds I used to be optimistic but arthritis has taught me better. :lol: I start a new drug with no expectations whatosever because that minimises the disappointment when nothing positive results. :wink: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • anniek
    anniek Member Posts: 39
    edited 30. Nov -1, 00:00
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    Thanks Toady :) I had never heard of Cimzia before,Im on my first week of the 2 injections and I am already experiencing waves of nausea hoping its just the switch over from Enbrel :|
  • lizzieuk1
    lizzieuk1 Member Posts: 302
    edited 30. Nov -1, 00:00
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    toady wrote:

    lizzie - any decision in the offing yet? :)

    Hi toady
    No nothing come through apart from a follow up appt made for 7th June with my usual rheumy, I think I will call next week if nothing through, guess it may take a while to set up the funding etc,
    Anyone remember how long it takes for them to set everything up?
  • toady
    toady Member Posts: 2,132
    edited 30. Nov -1, 00:00
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    lizzie, from the 2nd appointment of the 2 to approve me for starting it, it was just under 3 weeks until i had my first injections delivered - then I was contacted to fix up for a nurse to come out & supervise my first injection (which I pushed on a week-10 days for the most suitable time so it probably could have been quicker) - so just over a month-ish all told, I expect regions vary.

    hope your symptoms settle soon annie :)
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