Anti tnf

Hi, just registered on this site. Have been diagnosed with RA 13 years ago, have been on methotrexate most of that time and started to self inject with methotrexate about 6 months ago but it made me feel so sick. Have not been on any medication since October 2011, my consultant said the next step was to try gold injections. I am in absolute agony in my feet and hands, I feel as if a bus has driven over my hands and feet. Am dosing myself up on diclofenac and co codamol for the pain. I work full time,am divorced and my two children live with me, I don't hve a partner so have to do everything myself. When I saw my rheumy nurse yesterday, she said I'm now so bad that I qualify for the anti tnf drug but I now have to wait another 6 weeks to get another high reading before I can actually start injecting the anti tnf. I feel so bad now that the thought of putting up with this pain for another 6 weeks is making me feel so depressed. I can hardly walk at the moment, can't hold a kettle or do most things. They won't give me a steroid injection to tide me over incase it makes me feel a little better and the reading won't be as high. The pain is unbearable,any thoughts would be appreciated and is there anybody else on the anti tnf drug.

Thank you for reading my question.

25 Replies

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  • Hi Pandora just read your blog i myself dont know any thing about anti tnf drug

    only just been diagnosed and waiting to see the consultant,there are plenty of well informed people who am sure will help you,i am very sorry you are in so much pain and hope you improve soon.

    PP

  • Welcome Pandora - I am like PP I can't really help because I'm quite new to RA but what you are going through sounds terrible - I'm so sorry but at least you have come to the right place. Plenty of people will be here with advice on pain medicines for you soon I'm certain.

    Do you get any help from other professionals such as an Occupational Health person of physio? Have you had a really honest conversation with your GP about your present intollerable pain levels and the awful affects of the RA on your mobility yet? He or she is probably the best person to talk to - or if you have a rheumy nurse you could explain that you can't cope for 6 weeks in this kind of pain it's too much especially as a single parent with two children and a job. Big hugs and please keep coming on here - others who have been in similar situations re anti-tnf treatment will be here for you soon I'm certain. TTx

  • Hi ,Welcome form me too

    I'm currently waiting to be assessed for anti TNF treatment and i'm having a flare at the moment.I've got an emergency appt on Monday and i've already been put on high dose steroids by my GP I can't believe that they will let you suffer for 6 weeks!! I agree with Tilda - you really must speak to either your GP or rhuemy dept for advice - tell them that you can't carry on with your family/work responsibilities while like this.Sorry i'm not more help but the people who tell you to suffer for 6 weeks have no idea !!!

    Take care and let us know how you get on

    Julie x

  • Hi and welcome, I am on anti tnf humira and it has made a huge difference to my life, there is no cure for RA but humira, has made life enjoyable, where once I had no hope, I was on steroids for two years, and am now on mtx , plaquinil, and humira injection twice a month, bloods normal so fingers crossed.

    Don't hesitate to try anti tnf, mtx didn't do much for me on it's own, bt with mtx, managing to live good life mostly. See prev blogs.

    Good luck, it's a journey

    Gina.

  • Hi i'm on methotrexate and did try it in injectable form but hated it like that i had lots of side effects and my tongue lost taste buds and was extremely sore so i went straight back to tablet form. I tried lots of other drugs and had lots of bad side effects so i was finally put on Humira injections after waiting what seemed a very long time as i had to switch from private to NHS (as they wouldnt fund the anti tnf!!) and got on fantastically on it, it took a little while but once it kicked it i was as near to normal as i was before!! Unfortunately now 18 months later i've suddenly developed side effects which i cant believe after all this time being fine and have had to come off it and i am hoping to try another type soon, fingers crossed ( if only i could) I do hope you get to go on the anti tnf soon and all i can say is if you need to make yourself a pest keep asking how long things will take, whats happening next, what are they waiting for next, etc as its your life it effects and they are dealing with loads of people and it doesnt effect them like it does you. i am on Tramadol for pain which is strong but it does really help me cope with this horrendous wrist breaking pain so maybe think of asking for an alternative pain med as yours is obviously not strong enough for you at this moment. Good luck Sue x

  • Hi swodge,

    What side effects made you stop the Humira? Did your consultant tell you to stop?

  • Hi i got a really bad rash across the tops of my feet and ankles and then oedema of my calves (swollen) they where huge! I couldnt move them my ankles where swollen too looked like sausages with actual lines on them. Firstly i was told it could be insect bites as there were spots/rash and an infection, then as it was red also could be cellulitis and was treated for that. Then the spots turned into holes in my skin and it was all infected and i was on a lot of antibiotics it all got quite nasty. No one seemed to know what it was different consultants saying different things. Finally one of them decided it was a side effect of the Humira even though i had been on it for nearly 2 years! So they took me off all my meds and then restarted it all gradually to see what it was. Once everything was back to normal apart from of course i was flaring badly as i wasnt on any meds!! i did one injection of Humira and bingo the rash started back on my face!! It was horrible i looked like i had really bad acne and it took a long time to heal which has now left me with marks on my chin and nose as they again turned into holes in the skin which just kept coming off like burns!! I am not trying it every again!! I am going to try another type later on if they let me so i'm being brave as i am so painful now only just back on methotrexate only is not enough for me. Sorry its so long winded but i cant explain it all much quicker. I would say that i do know of others who have been on anti tnf s without any bother at all and have got their lives back so i think its probably just me!

  • Hi. I was diagnosed 13 years ago too. My treatment started with sulphasalazine, which was okay but stopped working after 18 months. Next injected MTX until I couldn't cope with injecting anymore. I started anti Tnf with Enbrel in 2007 and then combined it with oral MTX. That stopped working about 18 months ago when NICE had just changed the rules to allow a second attempt with a different anti Tnf drug if the first was no longer effective/tolerated. I'm now on Cimzia, which I inject fortnightly it has been brilliant. I do remember having to show 2 blood results and DAS scores over a certain level to qualify, so I spent a few weeks taking every anti inflammatory and pain killer I could but got there in the end. I am still working full time, which is exhausting, but I can just about cope and I am able to enjoy a relatively active life. I'm not pain free all the time but there are lots of good times to compensate for the bad.

    I hope the anti Tnf is great for you and you get your life back until they find a cure for this horrid condition. Susan

  • It seems positively cruel of NICE to insist on DAS scores over 5.3 on two separate occasions over a month apart, and high levels in blood tests, before you can be considered for anti-TNF. I wonder whether anyone has ever challenged this as a human rights issue? Px

  • Helix, that is an interesting question. I will do some research into the HRA to see if anything can be done. Perhaps NRAS could look into it as well. I agree these tests are a nonsense - any doctor worth his degree should be able to tell if someone is in pain with swollen joints and high blood readings. The problem is Anti TNF is so expensive (£10,000 a year per patient) that I suppose they have to be extra careful in targetting it at the right people. But why someone should be left in extreme pain (or in my case a wheelchair) for weeks at a time smacks of inhumane treatment under the HRA. LavendarLady x

  • I agree, it's the cost, guidelines smidelines, it's all to do with cost, and it's not fair. I would be in wheelchair , I am sure without anti tnf.

    G

  • Hi, I so know where you are at- this was me xmas 2010. The problem with the anti TNF is in order to get funding you do have to have 2 seperate assessments at least 6 weeks apart and I too was in the same situation of really suffering whilst waiting for 2nd assessment but as soon as that is done you can have steroids whilst waiting to actually start treatment.It is tough and stressfull !!

    So you need to sit down and plan how to make life easier for next few weeks. Maybe get GP to sign off sick and rest as much as poss. How old are the children are they able to take on some household jobs- tell them how it is.Have you got friends to help- and dont be afraid to ask for help as good friends will be only too willing but again they need to know how much you are affected as we dont always look ill!

    Grab a good book and take it easy.

    So gp tomorrow and get signed off, tell your employer how the situation is as we cant hurry the process along - you do well to have been working full time, I've had to reduce my hours and am still struggling. Im on Cimzia, doe you know what anti TNF they are planning? Use thie site to find out as there appears to be quite alot of us on various anti tnf's. You will get there but do look at all things that can make life easier for this terrible in between treatment stage, best wishes, xx

  • Hi Pandora, I am on MTX by injection and have no problems with it. I inject into midriff as advised by the nurse at my surgery. I know it is a drug which doesn't suit everyone but I found the tablets which I was on before gave me a lot of sickness and nausea,. I still get it occasionally but not much now and it is only a bit of nausea which soon passes off. I take some medication for the nausea and the GP can give you tablets to take as well.

    I have also been on Humira but had to change to Enbrel 2 years ago as I came out in a rash with the Humira. The Enbrel suits me and I have no problems with it,

    Like SusanJones, I still get some pain and inflammation - I think it is the nature of the beast but there are many times, when I am free of pain and can live a normal life. I am so sorry you are suffering so badly. I agree they normally won't give you a steroid injection in case it lowers your score too much but I don't see why you should have to put up with this for 6 weeks!

    I suggest you see your GP immediately for help and also speak to your consultant. You may need some stronger painkillers anyway as you may be getting used to the ones you are on. Cold and hot packs also help with pain and inflammation. In your position, I would be demanding a steroid injection to tide me over. My consultant told me when I had to go for the squeeze tests, to make as much noise as possible - lots of oohing and aahing and ouches if I was not particularly in pain at the time! So worth a try. Cheating a bit I know but I think these tests they put us through are ridiculous. Doctors should be able to see when someone is in such pain and everything is swollen up and the blood tests should show the level of activity anyway. Sometimes you have to make a fuss to get relief and treatment, not easy I know when you feel so ill.

    Best of luck and do let us know how you get on. LavendarLady x

  • Hello, I've been on anti-tnf for nearly ten years. I wrote a blog about it but it disappeared. So I'm just about to start on another and hope that will come up and be a help. But be reassured, while it doesn't work for everyone, it does for many people and it does bring great relief. Stand by for my blog in about half an hour!

    Cathie XX

  • Hi Pandora

    I have been on Anti-TNF treatment for over 10 years and it has enabled me to work 50 - 60 hours a week and run an organisation like NRAS so I very much hope that it works for you. The eligibility criteria laid down by NICE demand that you have a Disease Activity score of greater than 5.1 on two separate occasions at least one month apart and have failed on at least 2 DMARDS including Methotrexate. Due to the £20Bn of cuts which the NHS has to make over the next 4 years, the commissioners (the people who commission local health services and pay for these drugs) are being particularly stringent about ensuring that anyone going onto biologic therapy meets the criteria and your team may seem cruel keeping you waiting but if they gave you a steroid injection, you might fail the next DAS score which would mean you wouldn't be eligible for TNF so they are being cruel to be kind and get you onto this treatment as soon as they can so I wish you all the best and hope you get through the next 6 weeks and can then get started on the new therapy. Whilst they work for many people, they don't work for everyone but there are a number of biologic therapies now available and so the future looks much brighter now for people with RA than when I was diagnosed 30 years ago. Keep your chin up.

    BW

    Ailsa

  • Hi Ailsa, how lovely to hear from you.

    Isn't this something NRAS should take up? why should people be left in terrible pain, incapacitated, unable to work and dependent on others, whilst we have to wait for a DAS score a month or 6 weeks later?

    I agree things are much better now than they were many years ago and it may be being cruel to be kind but that does not help the people in the middle of it all who are in desparate need of relief.

    I endured many weeks in a wheelchair, in terrible pain, having to rely on my husband for the sort of intimacy I never imagined when I got married (and I am sure he didn't either!), unable to work for 41/2months, enduring disciplinary action because I was ill, unable to walk or function at all and sitting hunched in my chair wishing I could find the courage to take an overdose and get rid of this pain once and for all.

    I can't be the only one to feel like this. I know you have had RA for a very long time and I think you cope extremely well with the various treatments available and I admire you for heading up the NRAS and doing such a fantastic job for all of us, but it doesn't alter the fact that being forced to go through this system does not help anyone.

    Lavendarlady x

    all.

  • Here, here!

  • Hi Lavenderlady

    I totally agree that we shouldn't have to endure becoming so ill before we get access to biologics and we have been working with the BSR and other stakeholders to address the fact that we have to jump through higher hoops than most other countries in Europe. We participated in parliamentary events in both Westminster and the Scottish parliament last year on this very subject and contributed to the BSR document on guidelines for TNF which was published in September 2010 (here's the link rheumatology.org.uk/include...

    which calls for the DAS score to be lowered to 3.2 instead of 5.1. Representations have been made to NICE and we have a review of the Multiple Technology Appraisal which includes TNFs, Switching and Abatacept in spring this year and we are ready to put forward these recommendations at that time. We were advised in a meeting with Andrew Dillon (CEO of NICE) that the Review would be the appropriate time to address issue.

    We do a lot of work which is not necessarily that visible but rest assured this is an issue which is high on our agenda. We're also doing work on Quality Standards in RA and are about to do a submission on RA indicators to be included in the Quality Outcomes Framework which is what GPs work to and against which they get paid (points and prizes!). If your disease is not in QOF, GPs are unlikely to give it priority.

    Hope you are under reasonable control at the moment. All the best

    Ailsa

  • Thanks Ailsa. that's good news. We do know you are all beavering away in the background.

    I am not too bad at present thanks to MTX and Enbrel. Hope you are ok as well. LL x

  • That's great that NRAS are taking action, and no doubt a good moment to get changes would be when the review is planned. However, sometimes it helps achieve change when one group are working with the system, and another are putting on pressure via other means. Among your NRAS members will be loads of people with useful experience, and we each have an MP, a hospital trust and so on as well as ideas about other activities & our own contacts. Please don't take this in any way as a criticism of NRAS, but I do wonder whether NRAS could be encouraging members toward actions that could help lobby for RA recognition & positive change? Your reply read slightly more as if you feel that all necessary actions are being taken by NRAS already - and given severity of NHS problems, the current/future barriers to generous commissioning, and the experiences people recount about nightmares in getting proper treatment I really don't think that is the case?

  • Hi there helixhelix

    You are spot on and we have just invested in creating a new lobbying facility to go into our campaigning area on the website (not yet launched) which Jamie has been working on precisely because, as you say, we want to harness the power of our membership and provide you with the tools to lobby your local MP, so watch that space and please do email Jamie if you are keen to help and contribute to this new area!

    Thanks for the post!

    Ailsa

  • Ailsa, you're working on a Sunday too!

    That's an impressive amount of lobbying, and tragic that people are still having to jump through hoops. I wonder what we as a community can do to help people to get the treatment faster. On my blog about having anti-tnf I referred to research which one of the nurses in Oxford was doing when I was there. It was to try to quantify the qualitative changes that anti-tnf was making in people's lives. If that doesn't sound odd. If you add up all the things that we can do, it makes an impressive list. Is there a way of capturing people's imagination with this? A documentary or something?

    Sometimes I wonder whether the NRAS could use us a bit more. The tricky thing is how to do this. I must say that this website is a life line and my life would have been much easier if I'd had a resource like this ten years ago.

    Hope you can put your feet up a little bit

    XX

  • I agree that quality of life issues are key and this is an area I always stress when giving the patient view at all the NICE appraisals for new drugs I attend. It would be great to make a DVD about the importance of good treatment/early treatment and the difference it can make to lives (not just about biologics because if treated early and agressively enough with DMARDs you can achieve the same kind of response as treating later with biologics) but everything we do costs money and we have our budget and programme for 2012 set now. We do use our members and volunteers a lot and certainly the surveys we do which are vital are so important and sometimes we worry we are giving our members survey fatigue! If you would like to do more to help, we'd love to hear from you. Please call Maimie at the office!

    Off to have a glass of wine now!! Am in Madrid most of next week at Excellence in Rheumatology running a patient programme parallel to the scientific programme, we have 25 patients with RA coming from all over Europe including 4 from the UK so hoping to spread the good practice we have here in the UK amongst some other countries. I know we have a lot which could be improved in the UK but believe me, by comparison to some countries, like Estonia, Romania etc. we have a lot to be thankful for!

    Ailsa

  • I agree with all that others have said - this site is excellent and we all benefit enormously from HU. It is a bonus for us that NRAS has a CEO who knows RA and the treatments and pitfalls only too well. I hope that doesn't sound bad because of course it would be a better world if RA didn't exist and you didn't have to cope with RA. But many larger charities are not headed a person with whom members can have direct contact in this way and it really does help. And of course you are inspiring us all to want to get involved and support NRAS in any way we can.

    I'm aware that many members of NRAS and contributors to HU have skills and knowledge that might be very useful to the charity, so perhaps a questionnaire asking people if they would be willing to to promote RA awareness and NRAS by utilising their specified skills might be a good idea at some stage? Or maybe this has happened recently - if so I'm sorry for not noticing but there is such a lot to take in in the months following a diagnosis!

    Safe travels. I hope you enjoy Madrid - the Goyas and Velasquez's at the Prado are wonderful if you have any time off to enjoy looking around - although it sounds as though you will be pretty busy.

    TildaT

  • Well done Ailsa and all the gang at Nras, the RA sufferers in the U.K, are lucky to have such a dedicated team representing them.

    Ails a, 60 hour week, very impressive even with anti tnf:) good woman. All the fine tips you gave me pre op really helped, especially the more ' personal' aspects, that I would never have thought of. Thank goodness for the Internet, really is a lifeline for us guys.

    Kinder regards, Gina.

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