Starting enbrel

I have started many blogs today ..... And deleted them for fear of being thought stupid. I start enbrel on Tuesday. What if I let people down and it doesn't work for me? My family are so pleased for me, as am I, but ... What if it doesn't do it's stuff? My RA Nurse said it will stop me feeling ill all the time but will I be going up and down the shopping mall under my own steam, will I be up later than 9 pm on a good day? Can I stop my pred, lose the 3 stone it has given me and, well, be ME again. How have others found it? Is it worth the effort of injecting MTX and enbrel, faffing around at airports etc if I am still, to put it politely, crap? I know how lucky I am to be on an anti-tnf but, to be quite honest, I am a bit scared. At least when I had chemo, people knew what I was talking about but you mention ani-tnf to people and their eyes glaze over! Thanks, Virge

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You are writing about me when I was about to start Enbrel except that I was not injecting MTX and my fear was the actual 'could I do it' alongside all these others. Now 18 months later wondered what on earth I was worried and frightened about. Yes I can inject, yes I have a better quality of life, but no my walking is still not right. I still need to use either a crutch or stick, but I can go a bit further than before but not much, and slow. I still need to take painkillers but not all the time. I only take them now before I go out again to take me that extra.

Your new day starts on Tuesday, you may feel a difference within a few hours in that you 'feel' something is working, and you may get this for a whole after each injection, I don't feel it now, I think the body has got used to. For the actual feeling of wellbeing may take up to 12 weeks, which is why you have the contact with the Healthcare at Home nurses until the end of that time. Use them they are very helpful and nothing you say is silly, you may even learn a thing or two as I did. Anyway good luck. xxx

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Hi Virge, my heart goes out to you and I simply want to tell you, if this drug does not work you are NOT letting anyone down......you cannot control how your body will react. Yes you are in a very envious position in comparison to others, ,you are starting on anti-TNF on Tuesday, and many folks are still waiting, however this is your time and you should embrace it and what will be will be.

So good luck on the new part of your journey

Katie

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Thank you both so much for answering. The joke is that we are in a hotel in London, OH is at a business dinner at the Albert Hall and I can't undo the lid on the bottled water to take all my pills! Oh we'll, bath tap here I come. Hopefully if I can turn it on without flooding Canary Wharf! Xx vVirge

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I find the door jam is brilliant for helping get the bottle lids off and if not enough purchase a wet corner of the towel wrapped around it should do the trick.... If the wood starts to crack you are paying too much for your hotel

X

[watson3]

Trialing new drugs

Can cause such confusion fear of the unknown. The opportunity feels like a gift, but for some it can be like a burden. A burden some of us feel as overwhelming.

We are often our own greatest enemy. There is no one more important than you. So make next Tuesday your day. Take all the support you can get. Don't look for immediate results. It can take time for these drugs to show positive effects.

Be kind to yourself. This disease plays havoc with our emotions and our personalities. It is understanding that you feel frightened, but some of our friends on this site have had some really good results from using Embrel.

Good luck for Tuesday. Will be thinking of you.

Carole.

[Dotty7]

Ring for assistance - I'm sure someone would be only too pleased to come up and open the bottle if you ring and explain the problem.

I hope the Enbrel works well for you, but if it doesn't it won't be down to anything you did or didn't do.

Dotty xx

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Thank you so much, you are all genuinely lovely. Speaking to people on here is a bit like going into a bar, finding all your best friends and being comforted. BTW gave up on the bottle, and am still wiping myself down after being half drowned by the bath tap. Must be

stronger than I thought! Xx Virge

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HI Virge. I can imagine feeling very like you if I ever qualify for an anti-tnf. I'm being tested in a month and when I read your blog and those of others I think it's nuts that I might qualify since I'm still very mobile mostly. But strangely tonight the pain in my hips and groin and lower back is so bad that I was barely able to make it across the room to shut the window. Am now back in bed having to think about how I will make it to the bathroom to brush my teeth and pee.

You deserve Enbrel and if it doesn't work there are plenty more options still left ammongst the biologics. I really do hope it works brilliantly for you but as Katie says it's not your fault one iota if it doesn't. Pressure off. Please let us know and I hope you have a good night in that hotel! We are just downstairs in the bar you know - I'm the one who can't presently get up to greet you and buy you a drink! Tilda xx

[mocapup]

Hi-I have been on methotrexate for 4 years and Enbrel for over 2 years and hydrochlorquine and feel okay I still have a problem walking as my legs are bad but I have not gotten any worse. Enbrel has so helped with the pain but it does take a little while.And to the anyone who has gained weight from these drugs and oh yes I did and I followed a good nutritional food plan-I guess you have to put up with the weight gain to get help for the pain!!! I wish you all the best! JR

[summer32]

Wishing you good luck with the enbrel and hope you got the bottle undone x

[jeanabelle]

Virge, as KatieC has said......you are not letting anyone down.....you go ahead and take your enbrel and get on with your life as best you can. I too have just started a new biological, Abatacept that I get in a monthly infusion in the hospital. I can open my left hand and I can stand up reasonably straight. I also have a bit more energy, which is a great boost. I find myself looking forward to the day when I wake instead of dreading dragging my poor broken body around for another day. These bios don't always work but there are plenty more if this one isn't for you and when they do work, they are great. You will more than likely never be 100% your old self.....but 80 something isn't bad either considering what you have come from. My life is unreconisable compared to what I was before I started the bios. I wish you all the very best Virge.....keep in touch please and let us know how you get on. XX

[Gracelet]

Virge, I think you've been brave to admit how you feel. I started taking Enbrel last week. Having tried so many drugs that gave awful side-effects I too was nervous. I avoided even opening the pack of info until just before the nurse came. When I started to read I was overwhelmed by the message - to monitor my physical, mental and emotional changes and to write a list of targets as my health improves. There was so much support and understanding and I realised how scared and lonely I'd been.

I decided to talk to my body about accepting the drug, to relearn how to be calm and not inflamed inside. Apart from fumbling with the pen (my hands were so painful) it all went well and my change in mood was amazing. I felt as if my life was being handed back to me. Over seven days my stiffness and pain has reduced enough for me to potter about the house and garden. This is a person who has been bed-bound for several months and suffering for about 5 years.

So Virge, it's understandable to be nervous and understandable that family and friends want you to be well and to benefit from it. They'd only be sad for you if you continued to suffer. No one would feel let down. It sounds as if you've been through a lot already. This is a new opportunity for you to get some quality of life back. Good luck x

[allanah]

Hi when I started mine I was worried about the side effects and would I react to it! Also I had just been retired from work and I was weirdly worried that it would work straight away and they had laid me off for nothing?! I agree the strangest feelings go through your mind. It didn't work for me unfortunately but I just told people ok I am trying another one and we will just have to be patient. They only want to see u out of pain at the nd of he dy. hope u got that drink!! Xxx

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Thank you all for being so 'normal' and honest, it means so much. We are off soon to the 02 to see Michael Buble, a wedding anniversary gift from my lovely husband. Also helps that I have been swigging Bollinger for the last couple of hours before coming back to the hotel on my mobility scooter! How the mighty are fallen! Funnily enough any side effects don't worry me as I will cope with them. It is the fear of the new and unknown which I seem to be rubbish at and it has been so wonderful to know that I am not having un-natural worries as others too admit to these. Thank you all again xx Virge