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  • Enbrel, Remecade, Humira, TNF's?

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    Old 02-05-2008, 07:40 AM   #1
    Ronnied
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    Enbrel, Remecade, Humira, TNF's?

    Please could someone give me some advice as to which way to go, I am going to my rheumy on Monday 11th Feb, and they are going to discuss Anti TNF's. I dont know much about them and their side effects, only what I have read on these boards. I cannot tolerate the dmards, tried them all, and I would appreciate peoples advice as to which one they feel is the best and nicest to take (if you know what I mean) side effects etc. I have psoriatic arthritis and at the moment, my neck, elbows, wrists, fingers, knees and ankles are incredibly painful and I am exhausted.
    Look forward to your replies.

    Ronnie

     
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    Old 02-05-2008, 11:19 AM   #2
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    Re: Enbrel, Remecade, Humira, TNF's?

    Hi Ronnie,
    im afarid i dont actually have any experience of these drugs but know other people who have used them. Some people say they get the choice between the enbrel and humira first, from those i've spoken to choose humira as it is made from human protein as oppose to enbrel which is made from mice protein. As i've not actually researched this myself i dont know what the drugs are actually made from, only by what others have said. None of them have reported anything awful and feel much better in being able to move freely and less pain. I think it is down to individual though to see what works for them. Hope others will beable to give you some of their experiences. Keep us posted as to how appointment goes.
    Best wishes
    wenXXX.

     
    Old 02-05-2008, 11:40 AM   #3
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    Re: Enbrel, Remecade, Humira, TNF's?

    Hi Wen,

    Thanks for your reply. I have heard about the mice protein, sounds bit iffy to me. I will wait and see what others have said. They also mentioned gold injections. So will have to wait until Monday. How are you? Have you been offered any of the tnf's? Would you take them? Not so sure I want to put more dangerous chemicals in my body but really would like to feel better. I took Frankie for a walk today longer than usual, and I am suffering so badly now, my ankles are swollen, and my toes hurt and my knees have swollen so much my jeans are tight!! I know they say exercise is good, but it doesnt feel like it tonight!! Hope you are ok.

    Ronnie

     
    Old 02-05-2008, 07:09 PM   #4
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    Re: Enbrel, Remecade, Humira, TNF's?

    The TNF's are like this:

    Enbrel = Fusion protein from human derived TNF-a receptor (no mouse). Binds to free TNF-a

    Humira = Recombinant human monoclonal antibody - Binds to free TNF-a

    Remicade = Chimeric monoclonal antibody with murine (mouse) and human components - Binds to free TNF-a


    So, these are the 3 that bind to TNF-a. Enbrel is the only one that is not an antibody. The molecules basically float around like little sponges soaking up TNF. Theoretically the lease "invasive" as it is fully human AND not an antibody. Remicade is the highest risk as it is an antibody AND it has mouse parts in it. So, my advice is to start with the Enbrel and see how it does. I've been on it almost 3 years and is still working. The others can always be tried later if Enbrel doesn't fly.


    Now, the real nuclear ones are these:

    Amevive = Fusion protein of LFA-3 and human IgGL Fc region (immune globulin) - Eliminates T-cells by binding to natural killer (NK) cells

    Raptiva = Humanized monoclonal antibody - Blocks T-cell activation in skin (only for psoriasis)

    These actually go directly after immune system cells and modulate their number and/or activity. Pretty risky and should only be used after other bios have failed.

    Good luck with whatever you decide.

    Last edited by naklang; 02-05-2008 at 07:22 PM.

     
    Old 02-06-2008, 12:43 AM   #5
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    Re: Enbrel, Remecade, Humira, TNF's?

    Hi Ronnie,
    sorry your having such a rough time, are you taking any anti-inflammatories to help with the swelling. Im ok, learning to adapt things and when to slow down etc... I am on hydroxychloroquine (this is my first DAMRD) and steroids. Due to trying for a baby i am very limited as to what drugs i can take. You could have a look on the nras site where there is a discussion on taking the drugs you mentioned. Your conslutant should have info for you and hopefully you can make the decision. Takecare and keep us posted.
    Best wishes
    wenXXX.

     
    Old 02-06-2008, 07:31 AM   #6
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    Re: Enbrel, Remecade, Humira, TNF's?

    Hi Ronnie,

    I have psoriatic arthritis too and have been on enbrel for several years now and love it. I haven't noticed any side effects and have virtually no pain. My psoriasis has pretty much cleared up with an flare up once in a while but no big deal. I don't understand all the medical jargen being used here, just wanted to give you my 2 cents!

    Good luck!
    GS

     
    Old 02-06-2008, 08:13 AM   #7
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    Re: Enbrel, Remecade, Humira, TNF's?

    Thank you all for your comments, it has helped me a great deal, will let you all know what happens on Monday.

    Regards
    Ronnie

     
    Old 02-06-2008, 06:52 PM   #8
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    Re: Enbrel, Remecade, Humira, TNF's?

    Personally im on the prednisone, plaquenil, (was on methotrexate but had bad side effects) was on enbrel it worked some for a while but then the flares started more frequent & worse so dr switched me to humira every other week it helps 1st week of the shot but by 2nd week im in pain again dr said if it continues he will up it to once a week

    Good Luck I hope they find the right combo for ya

    Thats basically what this is trial & error finding the right combo to treat each person

    Have faith & stick in there

     
    Old 02-07-2008, 05:42 AM   #9
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    Re: Enbrel, Remecade, Humira, TNF's?

    Hiya
    I've been on Humira injections for a few months now and notice the difference. I am able to move better with less pain, obviously bit late for the deformities but definately helping. I am not saying the pain goes away but it is definately eased. My hubby does the injection into my thigh (or belly) once a fortnight and to be honest the solution stings to buggery for 10mins or so afterwards and I get slight swelling round the injection site, itchy and red for a few days but thats about it. I recently had my blood results back as well and they are better than they have been so it is definately doing something. I would recommend this if you have the opportunity to have it as not everyone can due to funding etc.
    Ur Rheumy if not nurse should give u a pack up/dvd etc to read up on and explain anything to you if any concerns. To be honest so far so go - I know its not cure but definately helps me. Worth a go.
    Let us know how u get on.

     
    Old 02-15-2008, 01:04 AM   #10
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    Re: Enbrel, Remecade, Humira, TNF's?

    Morning Ronnie,
    how did appointment go on Monday? Hope you are feeling a bit better now.
    Best wishes
    wenXXX.

     
    Old 02-15-2008, 02:35 PM   #11
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    Unhappy Re: Enbrel, Remecade, Humira, TNF's?

    Hi Wen,

    No not ok really, pretty cheesed off. Went to consultant on Monday, got her understudy, he was very very unhelpful, didnt look at me, told me I was not eligible for anti tnf as my psoriasis was not active! I said what about all the pain and my ankles and knees etc etc, he said take painkillers, to cut long story short I was furious at his attitude, especially as I was told I would be considered for anti tnf drugs this time and you have to wait so long to see them. I went straight to my gp the same morning, explained it all to him, and he is referring me to another hospital which is a teaching hospital, he said funds wouldnt be an issue. Only problem is, I will have to start from scratch with assessments etc, got an appt on 10th March so hopefully will get somewhere then. To add insult to injury, I picked up a chest infection and sickness and diarhorea and I have been ill all week, its Friday night and I havent slept for 3 days with coughing and running to the loo. Should have known really because when I got to the hospital there were signs saying there is an outbreak of norovirus at this hospital. When I told my friend how ill I have been this week, she said its sounds like the norovirus. So I now have to get over this. I am sick and tired of being ill, like many of us on this site.

    How are you doing?

    Ronnie

     
    Old 02-18-2008, 05:00 PM   #12
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    Re: Enbrel, Remecade, Humira, TNF's?

    I've been on Remicade for 8 months now and it's working fine for me. When it came time to choose the fact that Remicade would be administered by an RN in the doctor's office with a doctor on staff made all the difference to me. It also helped that it's only every 2 months for about 2 hours. I have no interest in injecting myself if I can avoid it. I believe it's also been around the longest, that was important to me, I'm a scardy cat.

     
    Old 02-19-2008, 02:58 AM   #13
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    Re: Enbrel, Remecade, Humira, TNF's?

    I have been on enbrel now about 5 months. I was scared at first to inject myself was it was no big deal at all. for the relief I get its worth it. the fatigue lifted straight away after the first injection. I still get a lot of pain but compared to how I was its a miracle. I can play with my Grandchildren now and live a much more normal life. I inject in the stomach and it doesnt hurt at all.

     
    Old 02-21-2008, 06:46 AM   #14
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    Re: Enbrel, Remecade, Humira, TNF's?

    Ronnie, sorry things did'nt go to well at appointment, you certainly did'nt need a bug aswell (oh the joys of the UK's hospitals!!!) Sounds a good idea to try out a different hospital and consultant. How are you feeling now? Im ok, ya know how it is with the ups and downs, looking forward to a bit of sunnier and warmer weather!!! Do takecare and i hope things improve for you. How's Frankie?

    Allycat and Mimi,
    am glad the drugs are working for you both, it gives hope to others.
    Best wishes
    wenXXX.

     
    Old 02-21-2008, 08:32 AM   #15
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    Re: Enbrel, Remecade, Humira, TNF's?

    Hi Wen

    Glad to hear from you. Yeah feeling bit better now. Be interesting to see how I get on at the new hospital. Frankie is fine, settled in as though he has been here years - thats poodles for you, they own the house in a very short space of time!! He keeps me active, out three times a day, and if he had his way four lol. Hope you are feeling ok and you have good news soon on the baby front, just relax, more likely to happen that way. Take care of yourself.

    Regards to all joint sufferers

    Ronnie

     
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