Anti TNF

kerrycc
kerrycc Member Posts: 89
edited 12. May 2010, 11:52 in Living with Arthritis archive
Hello everyone

I have had a few months where I haven't been too well so took a couple of unplanned trips to see my rhummy nurse. I was there the week before last and she went off to have a word with my consultant while I was there. They have now decided that my arthur has progressed again and they would like me to start on anti TNF injections along side my usual mtx. The problem is, I don't automatically qualify to recieve this medications because I don't score high enough (basically I don't suffer in enough joints :!: ) Anyway, the consultant is now writing a letter strongly recommending that I start this treatment so I should hear something soon.

Anyone have any thoughts? Does this medications really work? xx

Comments

  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -0001, 00:00
    Hi Kerry

    I havent had the anti-TNF treatment myself but after my
    rheumy appointment yesterday, it looks like I am going
    to be on one of these drugs pretty soon. (have to go
    back on Tues for a TB test).

    Hope that the outcome is good for you, I have a friend
    who after being on the usual type of 1st line drugs is
    doing really well on Rituximab.

    Hope someone comes along who can give you help
    and advise.

    Kath
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -0001, 00:00
    Hi
    I have not been on this drug but my GP has mentioned it as a possible treatment down the line. What is down the line? Did you have to be on other meds first. I have only been on Sulpha as a DMARD so far and was wondering what arthritis you both had and what drugs you had to be on for them to consider you for it?
  • frogmorton
    frogmorton Member Posts: 30,403
    edited 30. Nov -0001, 00:00
    Hi Kerry

    Your DAS score is too low eh? :(

    i reckon it hAS to be worth a try - things do not sound good at the moment for you.

    Good luck with the letter from teh consultant and i hope your PCT have the money for you to give it a try :)

    Take care

    Love

    Toni xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    There are a number of ant TNFs out there. I have tried three without any great degree of success. They are successful for some, however, and I hope you are one of those.

    I first had infliximab - can't remember which year, either 04 or 05, despite my score being low - my knees were so badly affected I had basically lost mobility. My second attempt was 06, enbrel. By then my score was higher (fabulous). Now I'm on humira (09) but that is failing. The funding depends on your health authority and the tenacity of your consultant - at least it does in my neck of the woods (Suffolk).

    You will probably be on other stuff too. Methotrexate is given to support the anti TNF - I am on that plus sulphasalazine, naproxen, an anti-inflammatory, and oral steroids. Welcome to the roundabout that you never climb off. Dreamdaisy
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -0001, 00:00
    Can you request TNF or do you have to have other drugs first. My aunty swear by it and insists i ask but feel a bit cheeky and wonder whether i would have to try other meds first - sorry for asking questions on your thread.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    In my case it was because all other treatments had failed. These drugs are very expensive and therefore tend to be rationed. Ask by all means but be prepared to be rebuffed. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -0001, 00:00
    Hi

    NICE guidelines state that you have had to tried 2 DMARDS (been unsuccessful) before going onto anti-tnf. I am on enbrel which is failing but I have funding for all drugs now so it's onto the next one I suppose!

    Janie
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hi Kerry - I really hope that you are able to have the opportunity to try one of the anti-tnfs. As the others have said they can be absolute miracle drugs for some, but not for others. Like Dream Daisy I had been through nearly everything else before the anti-tnfs became available on the NHS so I "qualified" under the NICE rules. I have had 2 so far (Infliximab for 5 yrs and Humira for almost 3). Both worked well for me but I became allergic to both and had to stop. But I was lucky enough to have nearlyt 8 years of "almost wellness" due to the drugs. Good luck! Tillyx
  • scorpio
    scorpio Member Posts: 159
    edited 30. Nov -0001, 00:00
    are they took in oral or injected form?
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -0001, 00:00
    It depends on which drug you are taking. Infliximab is given in hospital as an infusion and Humira and Enbrel are injected. Most people do their own injections at home (after being shown how to do it properly!).
    Tilly x
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -0001, 00:00
    Out of interest, what are the criteria for anti TNF drugs? Not that I'm in that position, I'm just curious. I heard it is very expensive, which is why they have fairly strict criteria for the trials.
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -0001, 00:00
    May sound daft. Arthritis runs in my family on both sides. I am the latest culprit and several family memebrs wear by tnf. If it is costly why don't they just prescribe tnf straight away and not pay out of patients having to try several other dmards beforehand which in itself costs money. I am only on my first dmard and it doesn't work, and am coming up to my 7 months being on it. This surely costs money - the second dmard will costs money, so why not put evryone on the good stuff?? If it is because of sode effects - well, they all have those! Can anyone enighten me / us??
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -0001, 00:00
    It's all down to money, for example mtx costs pence in tablet form whereas anti-tnf costs thousands per year, an enbrel injectioncan cost around £200 for just one. So they will try the cheapest first as they can work, it's how it is & what can we do about it? Nothing.

    Janie
  • gickygawky
    gickygawky Member Posts: 478
    edited 30. Nov -0001, 00:00
    Once they figured out I had AS (with all the extra bits for good measure) I was assessed for tnf treatment very quickly. I think this is because AS is known to respond particularly well to these drugs and also because my symptoms came on so quickly and all over the place.

    They used the Bath Index to test me however I can't remember tonight whether this is just used for AS or other arthurs as well...

    It surprises me that some of the people on this site are not being treated for the same problems I have with the same drugs and I think it must only come down to a couple of things - cost, which PCT you are under and whether you have a 'proactive' Rheumy.

    Arna x
  • theresa4
    theresa4 Member Posts: 696
    edited 30. Nov -0001, 00:00
    HI Kerry

    Ive been on 3 Anti tnfs now awaiting my 4th.
    I was on Humira(self inject), enbrel (self inject) then abatacept (infusion at hospital) Im now waiting for certolizumab due to start in the next month. All alongside my MTX injections.

    I have failed on all of the ones Ive been on and as they are the same type my rheumy said I have a 25% chance of success with the 4th but hopefully toccilizumab will be available by the end of this next trioasl time if this one doesnt work and it works differently to the other 4.
    I have friends who went on enbrel and within a week felt better one came out of her wheelchair to a stick and I saw her last week without her stick.
    There are others that have had great experience with Humira its just a matter of what works for you.

    Good luck with yours

    Theresa
    There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan



    Theresa xxx
  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -0001, 00:00
    bailey27 wrote:
    Can you request TNF or do you have to have other drugs first. My aunty swear by it and insists i ask but feel a bit cheeky and wonder whether i would have to try other meds first - sorry for asking questions on your thread.

    Hi Bailey

    I have had diagnosed RA for about 11yrs now and have been on
    Sulpha, Hydroxy, MTX and am now on MTX and Leflunomide which I have been for about 10 yrs now.
    Last Friday I was finally told that I would probably be going
    on to Humira (Anti-TnF), but it was me asking what is the next
    line as I told the rheumy nurse I was always feeling ill and having
    flare ups. So I would say ask about it, its not cheeky at all, its just looking out for number 1. :)

    Kath
  • kerrycc
    kerrycc Member Posts: 89
    edited 30. Nov -0001, 00:00
    Hello everyone and thanks for all the replies. I have tried Sulpha, hydra and am on hydra plus mtx at the moment. Nothing has worked that well and so I think its on this basis that they are attempting to get me the anti tnf sorted. The nurse did say that because I live in Sheffield, I have a very good chance of getting it !?*!? not sure why that would be, maybe they have more funding or something? Anyway, i should find out by the end of this month... xx
  • tjc123
    tjc123 Member Posts: 139
    edited 30. Nov -0001, 00:00
    Hi Im new to all of this can someone please explain the scoring thing to me :?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    As I understand it your DAS score is measured when they start prodding and pulling at your painful joints in order to try to assess the amount of disability you're facing. At my hospital they have a little outline of the human form and mark all the painful/swollen areas. The more you have the higher you score, the more likely you are to be given funding for an anti TNF. It's expensive stuff but very effective for many. Dreamdaisy
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tjc123
    tjc123 Member Posts: 139
    edited 30. Nov -0001, 00:00
    dreamdaisy wrote:
    As I understand it your DAS score is measured when they start prodding and pulling at your painful joints in order to try to assess the amount of disability you're facing. At my hospital they have a little outline of the human form and mark all the painful/swollen areas. The more you have the higher you score, the more likely you are to be given funding for an anti TNF. It's expensive stuff but very effective for many. Dreamdaisy

    Thanks dreamdaisy :D
  • kerrycc
    kerrycc Member Posts: 89
    edited 30. Nov -0001, 00:00
    tjc123 wrote:
    dreamdaisy wrote:
    As I understand it your DAS score is measured when they start prodding and pulling at your painful joints in order to try to assess the amount of disability you're facing. At my hospital they have a little outline of the human form and mark all the painful/swollen areas. The more you have the higher you score, the more likely you are to be given funding for an anti TNF. It's expensive stuff but very effective for many. Dreamdaisy

    Thanks dreamdaisy :D

    Hi

    The score also bumps up if you have tried at least 3 other drugs without success first too. Its a bit like jumping through hoops! That's how it makes you feel sometimes anyway :roll: xx
  • sherry33
    sherry33 Member Posts: 25
    edited 30. Nov -0001, 00:00
    Well the rheumatologists must all be feeling generous as I have had my consultant appointment and they are now considering anti-tnf treatment for me too!! I have been on mtx, sulfa, hydroxy, folic acid, naproxen, lansoprazole and iron tablets for a few years now in various strengths and combinations but I'm gradually getting more niggling pains in various joints and more regular but quite small flares. The consultant looked at my x-rays over last few years and is suggesting an ultra sound now where they look at inflammation levels and then decide the next line of action for drugs! I am not too worried about the levels of pain but more concerned about damage to my joints as I am still in my thirties!!! :D
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -0001, 00:00
    Hi

    Arthritis Care have some really useful info on anti-tnf treatments in the publications and resources section. thought I'd post the link for peeps wanting to read / learn more about the criteria used for accessing treatment and which ones are used depending on whether you have RA or one of the other sero- negative arthers. (biologic factsheet 6 very useful)

    http://www.arthritiscare.org.uk/Search/search_results_page_view?SearchableText=anti-tnf

    good luck with the treatments!
    I've PsA and am waiting to start on my third anti- tnf.

    Iris x :D
  • kerrycc
    kerrycc Member Posts: 89
    edited 30. Nov -0001, 00:00
    sherry33 wrote:
    Well the rheumatologists must all be feeling generous as I have had my consultant appointment and they are now considering anti-tnf treatment for me too!! I have been on mtx, sulfa, hydroxy, folic acid, naproxen, lansoprazole and iron tablets for a few years now in various strengths and combinations but I'm gradually getting more niggling pains in various joints and more regular but quite small flares. The consultant looked at my x-rays over last few years and is suggesting an ultra sound now where they look at inflammation levels and then decide the next line of action for drugs! I am not too worried about the levels of pain but more concerned about damage to my joints as I am still in my thirties!!! :D

    They must suddenly need to spend some of their budget! I'm still in my thirties too. Not a great feeling is it. I've already had a wrist fusion 11 years ago and now my other wrist isn't too clever either! Keep smiling :D xxx
  • kerrycc
    kerrycc Member Posts: 89
    edited 30. Nov -0001, 00:00
    dorcas wrote:
    Hi

    Arthritis Care have some really useful info on anti-tnf treatments in the publications and resources section. thought I'd post the link for peeps wanting to read / learn more about the criteria used for accessing treatment and which ones are used depending on whether you have RA or one of the other sero- negative arthers. (biologic factsheet 6 very useful)

    http://www.arthritiscare.org.uk/Search/search_results_page_view?SearchableText=anti-tnf

    good luck with the treatments!
    I've PsA and am waiting to start on my third anti- tnf.

    Iris x :D

    Thanks Iris, think i'll have a read at this... :) xx

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