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Anti TNF ~ your experience

Posted , 5 users are following.

rose0000
rose0000

After a two year battle with every drug going and being so terribly ill with AS my consultant has decided we need to move onto anti TNF after trying everything else with very little or no success.

Can you please tell me eveything you know about anti-tnf. Was it is successful? Did it give you a life back? Does it stop the pain? Does it help with the fatigue? I am so worried about trying it, but need to urgently do something, as quality of life is very low and nothing else seems to work.

I need both my hips replaced, does anyone know if it helps with hip pain? 

Thank you smile

1 like, 14 replies

14 Replies

  • emm2
    emm2 rose0000

    Posted

    hi there rose sorry to hear your not doing do well at the moment.

    anti tnf well i have had the lot embrel,humira twice,simponi,infliximab infusions so i know a little about them.at first the thought of injecting myself was a little scary but once you have done it a few times then it gets easier.depending on which one your having they are either pens or syringes.but both are just as easy.

    for me the humira with methotrexate worked well i felt "normal" no pain wonderful but unfortunatly i couldnt stay on methorexate as i was having problems with blood results.so as soon as they stopped it the humira by its self didnt have much effect.

    infliximab i was allergic to and all the others had no effect but its not to say these wont work for you.they are worth a try and are easy to use.they may also reduce the amount of medication you take if/when they start to work.

    i hope this is of some help to you good luck xx

    • rose0000
      rose0000 emm2

      Posted

      Do they have another idea on how to help you Emm? Do you have AS? It must be pretty bad for you to have tried so many different biological drugs as we don't take them lightly and the process is taxing to say the least, I am sorry they haven't been effective, but hope there is something else that can be done. The problem I have found too, with most of the drugs I have taken as well, the side effects are almost as bad or even worse than the AS, so really not especially helpful. I had internal bleeding with one set, which was horrendous, and taken into hospital with the worst pains in my stomach I have ever known. It is not pleasant or fun to go through this horrible disease. Can only hope they will find a cure soon. I hope you are feeling better? Does anything else work for you?
  • emm2
    emm2 rose0000

    Posted

    hi rose unfortunately I'm just waiting to go to pain clinic at the moment I'm just on painkillers and anti inflams.I had the same problems with a lot of tablets stomaches etc. but don't give up hope they might work for you and yes I do have as.we are all different and you may get some relief with anti tnfs.

    keep hoping

    • rose0000
      rose0000 emm2

      Posted

      They are trialling new things all the time. I hope you are first on the list to see if they work...It must be a very difficult position to be in. Have you found the pain clinic helpful? 
  • ppg
    ppg rose0000

    Posted

    My son is on Humira and he has got his life back, no pain, no fatigue a total miracle for him. He only takes Humira no other drugs, he injects himself once a fortnight and if you didnt know you wouldnt believe there was anything wrong. I wish you all the very best I hope you get the results that my son has experienced. Good luck xxx

    • rose0000
      rose0000 ppg

      Posted

      Thank you PPG ~ I am so glad your son is so much better. It indeeds seems to be a miracle for many patients. I am just on the threshold it feels like a big step! But I need to get my life back, I have two young children and a life that was once wonderful x
  • Bytheway
    Bytheway rose0000

    Posted

    Hi Rose.

    sorry to hear of your pain, I was in a similar situation but anti TNF drugs have given me my life back. I'm on my 3rd variation. I started on Humira but they didn't work well for me and I felt flu symptoms for the first 48 hours that was very unpleasant. I then switched to Enbrel and the worked for a few months, then I created a resistance and had to switch again. 

    Th most successful by far for me is cimzia, I've been on the fortnightly injections for 6 months and I feel amazing. I actually feel quite indestructible again. I'm 34 and I was a very active sportsman before my back and hip troubles. I'm not back to contact sports but I am pain free and very active.

    I wouldn't feel worried about anti TNFs but I would go into it with an open mind. The first one may not work for you, but don't lose hope, one of the others might. I still get some small flair ups (even though you're not meant to), so you have to watch for signs of this and relax up whilst it passes.

    You have to be careful with infections and illnesses as your immune system will be weaker. If you need to take anti biotics you have to stop the injections or the anti biotic won't work. This can cause problems as I find the injections have a cumulate effect so if you stop taking them you can really lose momentum. So basically, it's really important to look after yourself and keep away from people with illness.

    i think overall, they make you feel slightly different, and you have to work out what your body is doing so you can manage the wave of symptoms you will most likely still get.  Anti TNFs have been a godsend for me, but you still have to work with them by making sure you work on your flexibility and strength to help your body when the AS flair up and tries to take back over. It's a total balancing act that gets to me at times, but when you start to get a reprieve you have to keep positive and work hard to get as well as you can.

    good luck, I really hope they work for you

    • rose0000
      rose0000 Bytheway

      Posted

      Thank you for your brilliant post, and for helping me come to a decision. It is not a small decision to make. 

      In what way do they make you feel 'different' I thought that was an an interesting comment and I wondered if you noticed any changes taking them.

      I am struggling, I have been for some time. I live a half life at best, and although I could manage just about before, the hip pain is really bad and stopping me now even managing half a life! So time to really step up now. I have tried everything else and nothing seems to work. I am also very active, or I was, and it is changing who I am because I simply can not do it.

      Are you more or less pain free on TNFs?

  • Trogford
    Trogford rose0000

    Posted

    Hi Rose, what I would say about anti tnf is that is quite common for AS patients to go through 2 or 3 before find the one that is most successful.  Don't be put off by the number of patients repeating stories of multiple trials of anti tnfs.  My experience was that within 18 months or so my body would get used to the drug, adapt and it would become inaffective.  I started on Humira and went on to Enbrel, Simponi and now Stelera.  When I started a new drug it is, as one person equates, like a miracle.  They are incredibly toxic, or at least they can be for some people, these are effectively chemotherapy drugs.  Dont be put off by this just make sure you ask plenty of questions and do your research.  The screening at the beginning (testing for TB, xrays etc) can take a while so you need to be a little patient.  I have very bad hip pain by the way and the anti tnfs were good with that.  If that doesnt work ask your doctor about sacroilliac joint injections (I've had a couple of them and swear I could do cartwheels afterwards).

    All the best to you.

    • rose0000
      rose0000 Trogford

      Posted

      Trogford ~ thank you for such an excellent detailed response. May I ask you at what level in terms of pain and fatigue did you decide to go ahead with the TNFs?

      My consultant has been ready to put me forward for them for forteen months now, and I have been trying to put them off, trying all manner of things to get on top of this but nothing has worked.

      I am not in unbearable pain, but I am constantly tired, constantly in pain and find it hard to live normally but am still hedging....I guess I would rather not have to take them (as no doubt everyone feels the same) I am just considering a double hip replacement and at this age, it is a major decision with two young children, so if I am only now willing to try anything to avoid it. The fatigue and the aching, and actually the chest and rib compression is the worst aspect for me. I have some good days, but the pain is constant every day, and I can't remember the last time I was able to sleep at night. Would you describe the TNF as a huge decision for you? I am not sure why I am waiting!!

    • Trogford
      Trogford rose0000

      Posted

      Yeah ... I remember the anxiousness, I agonised over it for ages.  It kinda came to a head when my sleep (or lack of) got so bad I couldnt function at work.  Around about that time I had a bad fall in the bedroom and had to be admitted to hospital.  The consultant came to see me in the ward and said I think we ought to now pursue the anti tnf track.  The consultant could see I was really anxious about the decision so he put me in touch with another patient who was on Humira. For me there were simply more pros than cons.  It's easy to say I am glad I tried it because I have hindsight but I understand your concern because for you it is an unknown.  Anti tnf works differently for different people.  The only advice I can say is that if I had a busy life with two children I would take the risk and try it.  The only thing to be careful of is your susceptability to infections, kids pick up all sorts of stuff dont they.  If you have your hip surgery you will have to stop the anti tnf.  Have you thought about having the surgery and then starting the anti tnf afterwards?  When you go on to Humira for example the anti tnf nurses are incredibly supportive with help and advice.

      Hope this helps.

    • rose0000
      rose0000 Trogford

      Posted

      This conversation is incredibly helpful Trogford. I am hoping to 'put off' the hip surgery as long as possible, and possibly the TNF could help with the hip pain. It may be that I need to have the surgery anyway ~ but if the TNF did make a difference it woud be a much better route. The TNF may be able to deal with both problems, it is at least worth a shot. I am dreading the full hip replacement, and will find it hard to manage that level of surgery with two children. It is good to know you felt the same concern, they are new drugs and relatively unknown, but I am not sure I can manage anymore without them to be honest. 
    • Trogford
      Trogford rose0000

      Posted

      What you have to bear in mind about anti tnf is that it slows down the process of AS but doesnt stop or completely cure it.  Ultimately it might be best for you to have both the new hips and the anti tnf the help the new hips and other areas where you are in pain.

      This is exactly how it is Rose0000, the conumdrum wraps your brain up in knots.  Sometimes you just have to take a leap of faith.

    • rose0000
      rose0000 Trogford

      Posted

      A leap of faith is exactly right! And you are happier and fitter for it, and you glad you started them, as are most people I have encountered. It does really help talking to others who have been along this path, there is very little support from anywhere. The helpline was good, but it is much better to speak to people in the same position. Thanks so much for your help with this.
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