I need your expert help !!!!!

Hello to everyone, I really would like some info on some new meds that they want me to start in the new year..have tried many of the drugs to help my arthritis but so far no luck so they now want to try TNF's ..certolizumab or Etanercept..had chest x-ray/ blood test to check TB and other lung or chest problems which is why need to wait for results to start in new year.

What I hope to hear from you knowlegeable lot is wheather anyone is on or have started on either of theses meds..they sound pretty strong drugs but my consultant has ensured me that they will help with the terrible swelling and pain i'm feeling pretty much all the time.

Just have to decide which one has the best to offer which is why I'm asking for some advise.

hope that someone out there can help xxx

14 Replies

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  • Hi jellybean14

    I don't have the knowledge to help you choose which drug specifically, but for me one thing that helped me make a decision was the frequency of which I needed to inject. Although I was more tentative at first I still feel that if the injections are too infrequent it feels like you're starting again each time. Hence I chose the one which was used weekly as opposed to the one used every 3 weeks.

    Hope this helps.

    Best of luck with the new regime. Hope it makes a difference for you!

    healeyf

  • thanks thats something to consider x

  • I also chose to do the same and I feel once a week is not enough I defiantly feel better within my self but not much change with pain as yet but have only done four injection xx

  • Yes, they do sound very strong drugs, but now they have been used for a while and there has been more research done on them, they are really showing up as being much less risky and with a lot better safety profile than was first thought, and than a lot of other rheumatology drugs have. Which one you choose is really just going to come down to how it fits into your lifestyle - whether you want the regularity of more frequent injections (plus the fact that it gets out of your system quicker if you ever need to stop it) or want to do it less often. Also, some anti-tnfs come as pen injectors and some as pre-filled syringes. The pen ones mean you don't have to think about it too much, but the pre-filled syringes give you a bit more control over the injection.

  • Hi Jellybean14 I have had RA for nearly 40 years now and have had several operations to my joints. Over the time I have had many,many types of drugs, which have helped, but have not given me the relief I have had from having Anti-TNF treatment. There are several types of Anti-TNF treatments, some you administer yourself through an injection and some, like the one that I have, which is Infliximab, where I go to the local hospital every 6 weeks to have it infused by a drip feed. I have now been on this treatment for 7+ years and find it a tremendous help and infact I do not know what I would do without it now. However, all people are different and you have to give it a go. If it has been offered to you, I would take it because it is extremely expensive to the NHS and not everyone gets this opportunity. I would go for it, but give it a chance because the effect is not always immediate, it does take a while to take affect. These are strong drugs and I have to take Methotrexate as well and have to have regular blood tests as part of the agreement. I am sure you will benefit from it and I wish you the best of luck. Regards Brian.

  • I just started anti-tnf 2 wks ago , and i am hoping for relief from the extreme exhaustion, did you have this and did the anti-tnf help ?

    Nancy

  • Hi Nancy,

    Yes before I went on this treatment I was always exhausted with the control of the pain and didn't know what next would help. The Anti-TNF did make a big difference, but it took sometime to make this apparent. You have to take notice of the Specialists and give it a chance as they should know best, but only you will know if it is working for you. I wish you luck and pain relief. Brian

  • If you don't mind me asking, how did the exhaustion affect you (what could you do/not do) and how did that change once you were on it? Was it mos/weeks, and what dosage? I am taking 25mg of Enbrel. I can't walk half a mile without feeling as though i will pass out from exhaustion and just daily chores is too much. There was a time i was walking a mile a day, working full time and raising 2 kids and i did ok, then one day the exhaustion hit like a ton of bricks and i couldn't walk across the living room :( thank you, Nancy

  • I was in so much pain, that to walk a few hundred yards was a real effort and extremely tiring. As I said earlier, when I went onto Anti-TNF (Infliximab) - (about 7 years ago) it didn't relieve the pain straight away, it took several infusions before the effect of it began to work and I was then going every 8 weeks for an infusion of 250mg. It also doesn't completely take the pain away. There are days when if I over do things then I feel the consequences for it, even now, and I am having an infusion every 6 weeks now. There is no known cure for RA. The medication helps to relieve some of the pain and discomfort, but I think it is brilliant as I am sure I would be a lot worst by now if I hadn't had Anti-TNF. I eat healthily and even find that I can go to a gym and do some gentle exercise on the bike and tread-mill. I have had both wrists fused so that I cannot bend them as they were completely damaged and giving me so much pain. It was agony to lift a telephone or a mug of tea, but they are relatively pain-free now. I had my right wrist done first as I am right handed and then I had my left one done. This was over 30 years ago and they are stiil fine. However, I am going into hospital at the start of the new year to have a complete joint replacement to my right elbow as it has been destroyed over the years by the RA, but on the whole, I feel really good and I put it down to having Anti-TNF. Did you get an option from your rheumy as to what type of Anti-TNF you could have? All I can say is give it a chance and if the relief from it gets no better then push the rheumy to try an alternative, but I am sure they will be monitoring you anyway. Let me know how you progress and I wish you a happy conclusion. Brian

  • Just starting anti-tnf myself, but i don't mind injections so far, i hope it is helpful to both of us. Good luck !!!

    nancy

  • Hello Jellybean

    It's very difficult to make a decision when offered a choice of drugs as neither you nor the Rheumatologist will be able to predict which drug will be best for you.

    When I was given the biologic option I aqonised over the choice. I began on Humira (adalimumab) which had no effect whatsoever but Enbrel (etanercept) made a huge difference very quickly and I was soon able to discontinue anti-inflammatories and painkillers and joy of joy there was no more extreme exhaustion. (There are people I know for whom Humira worked brilliantly but not Enbrel).

    Again, how quickly the drug kicks in is dependent on the individual - some notice a difference after the first injection for others it takes longer.

    I use the pen injector once a week: it is very easy to use and takes moments to administer. You can use a pre-filled syringe if you prefer. I have no side effects except if I allow a little of the liquid to leak out onto my skin should I take the pen away too quickly. Then I get a little itching around the injection site and sometimes a little bump which is negligible and disappears fairly soon.

    Enbrel is well established and has been around a lot longer than certolizumab-pegol (Cimzia) - this being approved for use in RA in 2010.

    As earthwitch says, with use more and more information comes in on the safety of the biologics. When it comes to concerns about the toxicity of any drug I always bear in mind that I am am being very closely monitored so would soon be taken off any drug that had an adverse effect on me; that there is now a whole raft of drugs to choose from if one doesn't work for me and most of all that RA, left uncontrolled, would have a far more devastating effect on my body than carefully monitored drugs.

    Research has established that biologics are most effective if used in combination with MTX. However, Enbrel + 20mg of MTX proved too much for my immune system (too many infections) so I now use Enbrel only. Many people will get the most benefit if they continue with the MTX - if necessary I would go back onto a smaller dose of MTX but the Enbrel is working well in it's own right.

    I hope your choice is really successful for you. I've given a link to the NRAS website in case you would like more information on the drugs. There's an excellent booklet on biologics which you can either download or request to have a copy sent to you.

    All the best. Jude

    nras.org.uk/help_for_you/pu...

  • wow, thanks so much for all the information. I am so hoping for exhaustion relief !!! You give me hope as i only take sulfasalazine, and just starting the Enbrel !!! How did your exhaustion change? I am so pooped and i so want to get walking again :)

    Nancy

  • your advise has really helped me thank you, feel that the Enbrel will be a good choice as i know i can do the pen type syringe, not so sure about injecting myself but if it helps with the pain and exhastion i will be happy as i am still working 5 days a week as a classroom ass in a special needs school and by wednesday i completly worn out ...once again thank you

  • Hi Jellybean14

    It sounds as if you have already had loads of useful information from others on here, and as Jude mentions, our Biologics booklet goes into detail about all of the anti-TNF drugs. I have also included links below to our separate information sheets on certolizumab (Cimzia) and etanercept (Enbrel):

    nras.org.uk/about_rheumatoi...

    nras.org.uk/about_rheumatoi...

    We often get calls from people struggling to choose between the anti-TNFs and always say there is no wrong decision. You cannot know in advance which drug might work best for you, and in terms of side effects there really is little difference between the anti-TNFs. It often does come down to how the drug will fit in best with your lifestyle, as the others have mentioned, and sometimes we also suggest asking your consultant or nurse if they have a preferred drug.

    I wish you luck with your decision and hope that your chosen drug works well!

    Kind regards

    Sarah Kate

    NRAS

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