anti TNF- advice please!

ficus Member Posts: 5
edited 5. Jul 2012, 16:44 in Young people's community
Hi everyone,

I am new to the forum but would like some advice. I am 24 and have had lower back problems since I was about 13. 2 years ago I was diagnosed with AS. I have tried a number of different NSAID's with little success. Over the last 2 years the AS has got worse with frequent prolonged flares. So the Rheumy is talking about trying anti-TNF treatment, although I am still quite fit and able.

I guess it would be helpful to hear other peoples experiences with these drugs and what I can expect. I am a little apprehensive as I feel it is a big (scary) step.

Any advice would be greatly appreciated :)


  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hello ficus and welcome to the forum. I'm not a young person - far from it :roll: - but sometimes our young people aren't around so much so I'm just stepping in to say that it might be best if you copied this to the Living With Arthritis forum where more people hang out. Hopefully you'll then get two chances of answers.

    Mine is RA and the treatments might differ a bit but it does surprise me that your rheumatologist is going straight to the anti-TNFs without trying DMARDS which would be the usual first port of call for someone with RA. However, as I said, AS might be different.

    Quite a lot of people are scared by being put on strong meds when they don't feel too bad. Another lot would give their eye teeth for them as they feel dreadful and are still stuck on anti-inflammatories. Murphy's Law, I guess. Better to stop things getting worse though than to have to mop up the consequences of doing nothing. I hope all goes well for you.
  • MrDJ
    MrDJ Member Posts: 239
    edited 30. Nov -1, 00:00
    Hi and welcome to the forum.
    long story short i was diagnosed 27 years ago with OA
    then a couple of years later after a HLAB27 blood test came back positive i was diagnosed with AS (BUT) due to the symptoms and many many tests they decided i actually had juvenile AS (this was at the age of 23) as it affected my eye and not my spine.
    then 8 years ago i was diagnosed with RA
    about this time i was offered the trial of infliximab anti tnf. after reading many websites on the side effects (worse thing anyone can do is read websites) i bottled it as i lost my dad to cancer a few years earlier and one of the words that kept cropping up was cancer.

    anyway i was on crutches for at least 9 years as i was in severe pain all the time. a year went by and i was offered the treatment again and i jumped at the chance.

    well i had my 70th infusion last wendesday and im still alive and kicking.
    at the time of my first infusion a blood test was done. my esr and crp readings were 97 and 122 (should both be blow 10)
    they done the infusion and then took more bloods.
    these reading came back 7 & 10 and i hit the roof as i thought the lab had mixed my bloods up with someone else. as i work at the hospital i got them to take more blood and low and behold they were still below 10.
    within a few day i was walking without crutches for the first time in 9 over years. this isnt a miracle cure but it sure did help.
    as most of my damage was already done to my joints i still do suffer quite a lot but for new patients this could sure help. now there are quite a few different anti tnf treatments available so if one doesnt work then they try another one.
    i just wish it was available back in the mid 80's

    good luck on what ever you decide but dont expect miracles as it doesnt sadly work for everyone as you will be able to see on this forum.
  • mummy2LeoandRiley
    mummy2LeoandRiley Member Posts: 7
    edited 30. Nov -1, 00:00

    I am 25 and was diagnosed with JIA/RA at fifteen months old. I was under the assumption that you had to have tried 2 different DMARD treatments to be eligible for anti-tnf treatment although this may have changed as I have been on it a few years now and I also have a different type of arthritis to you!
    In my personal opinion it is a wonder drug, not only is my arthritis loads better but my tiredness levels and all those things associated are better too! I have not long had my youngest baby so am off it at the moment although I am about to restart my treatment and can't wait! I started about 4/5 years ago on the Infliximab infusions but had an allergic reaction to them so switched to the self injecting Etanercept once a week. I did think the infusions worked slightly better than the injections but couldn't continue spending hours in hospital and having to dose up on Piriton to get me through an infusion once I had my oldest son! I have found no side effects so far with the Etanercept injections, can be a bit sore and red after the jab but otherwise it's fine! Hope this helps and if there are any questions you want specifically to ask I will be happy to help!
  • Katielawson1000
    Katielawson1000 Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi I am a 21 yr old female which all this started from having a terrible car crash early in 2006 when i was 15!
    My lower back pain got worse over the years and my doc and the hospital both said it was pulled muscles and bruising at the time of the crash and then further down the line whip lash that wud heal in time! I new in my heart from day one the pain and difficulty I was finding wasn't normal, we all know are own bodies! What feels right and what doesn't! I was constantly to and from the docs with different pain killers and inflammitories then they referred me to physio and eventually they sent me to a rheumatologist specialist were only roughly 2-3 years ago I was diagnosed with sacroilitis, inflammation of the lower back (sacroiliac joint) which is connected to My lower spine and pelvis.. As you people who also have this can agree its very painful and can really change and affect you as a person and ur lifestyle. I struggled hard with post traumatic stress disorder even 4-5yrs after the crash as I found it near enough impossible to accept and was convinced my life was ruined and would never be the same again because of my condition for this I received help from a councellor to help me deal with things and also I struggled being a passenger and not having control of the vehicle, also at this point I wasn't fully aware of all the treatments available to me, I tried massage as my shoulders and top half of my back and neck are very very stiff whereas my lower back is very tender to touch so gentle massage on my lower back to prevent setting the pain off!(I have massage 2 times a month depending on how bad I am) I have had acupuncture and reflexology which I found helped but only short term as well as the massage is short term relief. But every little helps. I have heat packs and pads and support belts and chair supports to try and make everything as easy and as comfortable for myself whether I'm at work or at home. I have also had cortazone injections into both of my sacroiliac joints which is a mixture of steroids and anaesthetic I found these worked amazing for me I was around 6-9 months with next to no pain and I finally felt I had a break from my pain which also helped me cope better mentally. Over time I have learnt to accept my diagnosis. I have Also been diagnosed a little while later as this I think is part of my condition I have developed Hip bursitis in both hips but my right side and right hip are my most painfullest and I have had a cortazone injection in my more sorest hip also.
    The pain can go down my leg and my knees :cry:
    I was told by the specialist when u feel ur injections are wearing off and you are beginning to feel your pain again to come back for more, and this is what I did I was having better quality life I was happy!!! Pain free!!! However they said they didn't want me on these anymore and suggested anti TNF injections which I am having my first one performed by a nurse who is coming to my house tomorrow!
    My specialist has advised and they are keeping track as well as my physio that I have been goin to for 6 yrs to that my sacroilitis could turn in to Anklosing spondylitis.
    Anklosing spondylitis is said to be hereditary but my family have no history of this!??
    Fair to say I'm a little bit nervous but who wouldnt be!? My back condition is a big part in my life as it has took on such a big affect!
    my state of mind is if it's going to help me then what's a little under the skin injection whethere it stings or not I will do anything to be able to be pain free and live my life like a normal 21 yr old should and even to wear a pair of heels on a night out and not regret it and be in agony the next day!!! Would be a treat!! The cortazone injections I had in the past were between my joints! And had to be done by X-ray so I believe I can cope with a few seconds of stinging and a under skin injection!
    Hope my general brief story might help some of u out there who are finding it hard to accept.....that it is possible to accept and that ur life isn't 'over'! There is help and treatments out there! And take care of yourself I always tend to feel pain more after doing something the day after I avoid heavy lifting too at work etc and make sure u tell ur work place so they are aware of ur needs etc.
    Write bk people on any info on anti TNF do they work?
    Thanks Katie xxx
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    Hello Katie. Welcome to the forum. I am amazed by how much you've gone through and also how well you have coped with everything. Good for you!

    I should explain that I'm not a 'young person' - far from it - but, like you, our other young people are often out and about getting on with life.

    I've not had anti-tnfs (yet?) though many on the forum are on them. I love your attitude and I'd just like to wish you every success with them. Please let us know how you get on with them.
  • MrDJ
    MrDJ Member Posts: 239
    edited 30. Nov -1, 00:00
    Hi Katie and welcome to the forum.
    all i can say is you go girl :D your story will be an inspiration to any of our new younger members that join the forum who are in need of support as its a lot for anyone to take on board at a young age and is life changing.
    sorry to hear about the accident which is enough for a youngster to cope with and then find out its triggered this horrible condition as well.

    ive had a few car accidents in my time and none have been my fault but after any trauma like that the condition can be triggered and rears its ugly head again until the body settles down which can take weeks or months with the stress and anxiety of it all.

    i hope all goes well with the injections today and i hope they start working straight away to give you some relief so you can continue life a bit more like you would of wanted too before all this started.

    i dont know much about the injections as im still on the infliximab infusion every six weeks (70th a few weeks back) so fingers crossed for you and keep us updated on how your getting on.
  • Katielawson1000
    Katielawson1000 Member Posts: 11
    edited 30. Nov -1, 00:00
    Sorry for late reply how r u all doing? :D
    I've been on my anti tnf inejections for a few months now and they seem to be working n I feel great well a hell of a lot better pain wise..... Obviously I still every now and then take my co codamol and inflammatory meds when I have a little pain (to keep on top of them mainly to help myself really anything to reduce my pain) or time of the month as my back is always bad then!! And I still take things easy but they really have worked for me so far so good.
    One thing I did have to come off then for a month or two when I came Ill as ur immune system is lowered by anti tnf. I came off the injections to get myself better then went back on them recently.

    My first injection when I first began anti tnf at the start of my anti tnf treatment went well the nurse was with me to watch over me as I would be doing the injection on my own from then on... Everyones symptoms will be different but here were a couple of mine ... I felt a lil light headed but nothing I couldn't deal with, in and out of feeling slightly sick and a tiny bit of upset stomach the main symptom for me was a strange metallic taste in my mouth for a day or two which wasn't very pleasant but this happened on my first 2 injections but now I am use to it... but at the time of my first injection I dealt with it n then I was fine and after my second injection I felt it starting work I did not expect it to be that quick! I feel a happier person now.....

    Note : I have just gone back on them from being I'll with a cold and upset stomach bug

    If anyone has any questions please do not hesitate to ask and I will get back to u when I can. Xxxxx

    P.s a good tip take your anti tnf injection 2-4 before going to bed this way your can sleep off if and any symtoms xxxxx
  • MrDJ
    MrDJ Member Posts: 239
    edited 30. Nov -1, 00:00
    welcome back. only 3 months to reply but we will let you off :lol:

    great to hear everything is working well for you.

    ive had a relapse 3 weeks ago when i lifted a box and turned awkwardly and knakered my back. 9/10 on the pain rictor scale and im still suffering. relying on morphine and dehydrocodein now and its not got much better.
    its now triggered my good hip and my si joints which is what i was dreading as i have ankylosing spondilitis it has trigered the arthritis again and slowly starting to affect the spine.

    moan over but so glad you are getting some pain relief.

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