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Rank: Member
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Joined: 9/20/2012
Posts: 23
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Hello everyone, can anyone give me any info or advice on Infliximab. I am going for my second Anti TNF review on Monday and am pretty scared about it all. Other meds have failed to control my RA so this is the next step if they ok it. I have a needle phobia so cannot inject myself hence they have said infusions may be best way forward. Any of you on it? Is it working? Take Care JulieBoo xxxx 
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Just wanted to wish you luck with your new treatment. XXXXXXX
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Rank: Member
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Joined: 9/20/2012
Posts: 23
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Thank you Naomi  I go on Monday so wil let you know from a scared Julie xx
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Julie, I understand how scary it is to try a new drug, especially an IV one at the hospital. I'm sure the nurses and other staff will be very kind and caring, especially if you tell them how scared you are.
I think the way we react to drugs is partly down to expectations and assumptions that we've already made about the drug. Think of the placebo effect for example, and just thinking about Methotrexate and knowing it's a chemotherapy drug is enough to make me feel nauseous without even taking it...so some of my weekly nausea is probably psychological in origin. I hope you can be mentally strong and psyche yourself up to feeling positive about how this wonderful new drug might just be the one to get your RA in remission and give you some of your life back. Good luck with the infliximab and please let us know how you get on on Monday. I like to keep an eye on how all my RA friends are doing on their different drugs as I never know if I might be on them too one day. Naomi, XXXXXXX
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Rank: Member
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Joined: 9/20/2012
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Hello again Naomi, you are so right, when I first went on Methatrexate they were my thoughts too..argh a cancer drug! how had I come to this. Because its not worked and neither as the combination of that with sulphazaline they are now talking inflixamab. I have had my first joint assessment and fit the criteria but have to have another tomorrow. I am scared about having it but also about the fact that they might turn round and say I can't now, I feel so mixed up and just want them to sort this pain out. It all just seems never ending  . I always try to stay positive and promise I will try to continue to do so but I just think I feel in limbo at the moment not really knowing whats happening. Thank you for your kind words and listening to my blubbering . Will let you know the outcome, fingers crossed. Really hope the methatrexate works for you and is getting your RA under control and the sickness not too horrid. Take care hugs Julie xx
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Julie - good luck for tomorrow. You've got a good positive attitude and that counts for loads!!!! Think happy thoughts - remember it's not a needle, it's us friends giving you a warm and gentle hug and Infliximab is all our best wishes making you feel better Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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I've just read your reply to me on my thread about starting anti tnf's. I don't know about you but it makes me well up inside when I read all of the kind and supportive replies I get, I think its just knowing that others understand how we are feeling. I have not yet told my husband my thoughts about starting anti tnf's, when I told him that I had reached the criteria he said...Well, that's good then....He hasn't really got any idea of what is going through my mind about starting these drugs. I am scared like you about taking them, I've always thought that I would never be that bad to have to take them. I've never read the articles in the NRAS magazines about them, simply because I thought I never would have to take them.
When I had my first DAS score done I was quite bad, I had a steroid injection that day and my second DAS score appointment was made for 8 weeks later, I was going away, that is why there was an eight week wait. When I went for the second appointment I felt much better, in fact I didn't think I would of scored enough, was surprised when I was told that I had. I know realise that I was still having some relief from the steroid injection. I then went through the, do I really need this drug?, am I really that bad?, things are better that they were so will I be taking this drug when I don't need it? I needed some sort of justification to start this drug because I was really scared about it all. Well. after the week that I've just had I've had all the justification that I needed. I am now more scared that when I start taking the drug it won't work then any side effects that might happen.
My first thought was to take infliximab, go to the hospital and let them do it. But then thinking about it I didn't want to be tied to having to go every 2 months to the hospital. My daughter lives in Gibraltar and I see them at Christmas, Easter birthdays etc and I knew that sometime or other the infusion would clash with going to see them. I inject MTX so I am not scared about injecting myself, would rather not do it, but I have to so I just get on with it, at the moment I am leaning towards Enbrel.
I don't really like the fact that we have to make our minds up on what drug to take, I have spoken to the helpline at NRAS and they've told me and I understand what they mean, that they (the hospital) are wanting my involvement in my treatment and I am part of the decision making. I realise that no one knows which drug will work and it really is a try it and see, but I really would like more input from the hospital and it not being left just to me. I am wondering if they like us to say which one so that there is no comeback on them if it doesn't work, just my thoughts there.
I have read may reports that infliximab have worked for people so I hope that you have a positive result from it. Don't worry too much about tomorrow, I am sure that with your last results you will pass. I have read in some of the information that I've got that 97% of people who score enough on the first assessment do on the second.
Keep us updated on things.
Love
Paula xx
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Paula - a quick Hi from me. So sorry that you've had such scary thoughts - it's a really tough decision, but you're not alone. It's good that you can use us as a sounding board, and although I haven't direct experience of anti-TNFs I can relate to your fears about becoming ever more reliant on drugs and having to make great leaps of faith when we start a new one. Just remember that anticipating problems is often worse than actually facing any difficulties that arise. You're right to be cautious, but try not to let your fears overwhelm you, focus on the benefits and it is likely to become a self-fulfilling prophecy - Try not to overthink - once you have got all the facts and listened to all the advice, you'll know what decision is right for you. Then just trust yourself and keep reminding yourself that you're choosing the best option and think positively about the benefits. Best wishes - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Paula, I`m wondering if my rheumy "bucks the trend," in that she decided which anti-TNF to put me on, as she said she was taking into account my metabolism. She prescribed humira, and I just assumed she knew best. Having said that, this was over five years ago now, and I`m still on it, and it`s still doing its job. Good luck with whichever one you choose, Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi Paula, hope all went well today? Know just how you feel, its very scarey. Im on anti tnf, simponi, mx and leflunomide, its given me back my lifef which is great. Re the inflixumab, my son has Crohns and has an Inflixumab "skoosh" as we call it every 8 weeks. I know its a different condition, but he feels great afterwards and doesnt suffer any side effects at all.
I too thought long and hard about anti tnf and decided to go for it. Totally understand how you feel and hope that it all went well today.
lots of love
Heather xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Kathleen
I've just posted my latest ramblings on my own thread about how things are at the moment, don't want to post it here because I don't want to hijack Julies thread, but just wanted to reply to what you said.
When I first knew that I was going to start anti tnf's and I was told to choose which one I read some back post in the drug section on here to read others thoughts. Several of us have been given the choice from what I've read. I think you may be right in your thoughts that they did things differently 5 years ago. It is a relatively new drug and they probably now realise that it is just wait and see what happens, nobody can predict what the outcome will be. Suppose they think that it helps us to be part of the decision making. I have wondered if I should ask my nurse what she would take, but think it might throw a spanner in the works if she didn't say Enbrel, so better not go there. So pleased to see that after five years it still doing it's magic for you, hope I get the same results.
Thank you Heather for your message, another positive result from anti tnif's.
Paula xx
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Rank: Member
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Joined: 9/20/2012
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Hello to you all and thank you once again for all your lovely words and understanding of my fears. I went to hospital on Monday and was told I am definitely in criteria for anti tnf and they hope to start it next week . Although relieved that they are trying to do something my fears remain. When they tell you all about the side effects etc and you sign on the dotted line you realise the enormity of what you are doing. I am trying now to see this as another part of this journey I have found myself on, hopefully this will lead to a more painfree and copable life than the one I have been living this past 18 months. They have told me that I wont get the life back I had before but hopefully it will improve things. My left leg is permantly deformed they think but hopefully will be less painful too. As Sylvia said" try not to over think", I think thats good advice because I find myself going round in circles  . I have made the decision to give it a try so here goes and fingers crossed my journey continues on the right road now. Hugs and thanks to you all Julie xxx
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Rank: Member
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Joined: 9/20/2012
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sylviax wrote:Hi Julie - good luck for tomorrow. You've got a good positive attitude and that counts for loads!!!! Think happy thoughts - remember it's not a needle, it's us friends giving you a warm and gentle hug and Infliximab is all our best wishes making you feel better
Sylvia xx What a lovely thought Sylvia, when I start the infusions next week I will be thinking of you all and that lovely hug
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Julie
Just a big hug from me. Just replied to you on my thread.
We are going to have to be brave little soldiers going into battle against the war of RA using what I have read somewhere referred to as ........The Big Guns to fight RA
Paula xx
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Julie - very, very best wishes - nothing else to add, except big hugs!!! Sylvia xxxxx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hoping it goes brilliantly well how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Julie hugs from Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Member
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Joined: 9/20/2012
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Hello everyone Well I had my first infusion of infliximab yesterday. I was very scared and unsure if I was doing the right thing but the past few weeks have been unbearable so had no other choice really. It wasn't as bad as I thought and one of the lovely things that came out of it was how many fantastic positive people I met who are on same treatment, it really lifted my spirits, no one moaning just encouraging friendly warm people who have been living with RA alot longer than me . I have been very very tired since but was told thats normal. Go for my next on 22nd. I hoped I would have a 'ta da' moment and jump out of bed this morning but unfortunately no such luck, bit too early for that I think, but I live in hope. Thank you for the hugs and hoping you all are coping well and not too painful today . Take care Hugs Julie xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Been wondering about you and how you got along. Having it done the first time must of been abit scary for you. Don't know if it helps to be in a hospital or at home. Having it done in hospital makes it seem more serious, but I would imagine that you feel safer knowing that someone is at hand if anything happens. I have asked and have been assured that when I start taking my anti tnf the nurse will stop with me for a while afterwards. She didn't when I first injected MTX.
Now that the first one is done the second one will be easier for you.
Hope your Ta Da moment comes soon.
Take Care
Love Paula x
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