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Date: 14.10.2013
From: Sandy

Subject: how do I choose ??

Hi All
I've just come back after my hospital appointment today ... I've been given three leaflets - one for etanercept,one for tocilizumab and one for golimumbab... to cut a long story short, I am being taken off rituximab as for some reason it is no longer working for me (the hospital inform me that this happens sometimes but they don't know why !)...anyway, apparently I am supposed to read through the leaflets and decide which one I would prefer ....how am I supposed to choose ? - I appreciate that ones weekly injections, ones monthly injections and ones a monthly drip ....I don't care about any of this - I just want one that works !!!! anybody got any experience ? - what a ridiculous system - how am I supposed to know what will be best for me ?? - When I asked my rheumy nurse which one was best ,she just said it depends on the person but that they wouldn't give me rituximab again so I had to choose !...freedom of choice seems to be taken too far these days - surely the specialist should know which would be best for me - he's the one that's qualified !! I've just been given another steroid jab (only had one a few weeks ago and it hasn't worked -they said they couldn't let me leave without some thing as I'm in so much pain)I've got to get back to them within the next three weeks to let them know my decision - but I don't know what to do - what if I choose the wrong one ??
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Date: 14.10.2013
From: Suz

Subject: Re: how do I choose ??

Hi Sandy.

I agree with you the rheumatologist should guide you through choosing the right one on the level of pain and how much inflammation results they are getting from your blood tests. I was on rituximab as my initial biologic but not having it anymore due to some bad eczema problem, I wouldn't know which next biologic to choose either myself if I was given so many.

Perhaps you need to ask as many questions to rheumatologist dept or or do research on these biologics on how much they help each patients.

All the best.
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Date: 14.10.2013
From: Bsk

Subject: Re: how do I choose ??

That's ridiculous Sandy. Maybe you could give the NRAS a ring? They have a very helpful helpline and you can talk things through with them.
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Date: 14.10.2013
From: Colin W

Subject: Re: how do I choose ??

Hi Sandy , agree with bsk & ask http://www.nras.org.uk/ they have a free helpline & should be able to give you some advice ,

myself been on etanercept & now on golimumbab with is monthly injection , not had any side effects but they doubled the dose to 100mg but still not working as they want & seen the rheumy nurse last week & she was on about changing it .

the middle one is pretty new & approved by NICE earlier this year so dont know much about it ,

http://www.nras.org.uk/about_rheumatoid_arthritis/established_disease/drugs_used/_drug_updates/roactemra_tocilizumab_updates_and_research.aspx
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Date: 15.10.2013
From: Paula-R

Subject: Re: how do I choose ??

I was in the same situation this time last year. I was given the choice of Enbrel, Humira and Infix......?(the infusion one).

I didn't like the idea of an infusion, was worried about side effects. Thought to myself what happens when they give me 8 weeks worth and my body can't cope with it. Lots of the drug in my system to get rid of. Plus I didn't want to be tied to have to keep going to hospital for the drug.

Humria is once a fortnight and again I was worried about a lot of the drug going in, so I decided on Enbrel, thinking that if I do have a reaction there is not much of the drug in my system.

My nurse told me that it really was just a question of how the drug is administered, because they were really much the same. I think I shot myself in the foot because I told them that I had done a lot of research on the internet about anti tnf's. But I really would of liked a bit more input for the hospital, after all this could be and was a life changing decision.

When I told that what I had decided I was then told that it was my consultants choice of drug for me. Why I couldn't of been told this before I don't know. My consultant told me that it is the one with the least side effects, something to do with making antibodies.

Enbrel is my life saver, I felt the difference the next day and I have not looked back since. I am not in clinical remission. No side effects at all.

Hope this helps.

Paula
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Date: 15.10.2013
From: Chris

Subject: Re: how do I choose ??

I've only 'done' etanercept, it was the 1st biologic i tried and was simply amazing. I was able to run up hills (getting fit with the dog) after taking it.
It worked for me for about 9 months (same as the other 2 biologics i've taken).
Not tried the other 2, best of luck.

Chris
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Date: 16.10.2013
From: Sandy

Subject: Re: how do I choose ??

Hi All - thanks for your replies - I'm still a bit undecided, but I'm glad its not just me that this has happened to - as Paula says it happened to her as well - I took all your advice and I've spoken to the advice line on NRAS and they were helpful - I hadn't thought about it in the way that Paula described about how much drug goes into your system .... I think that's a really good way of looking at it ... I've already decided that I'm not prepared to risk the tociluzumab as one of the very rare side effects is blindness and as my mum is blind and my sister is partially sighted ...I don't care if its only one in so many million that this happens to - Its my biggest fear - so that's a non starter ...anyway, thanks again everyone, take care, Sandy x
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Date: 16.10.2013
From: Colin W

Subject: Re: how do I choose ??

Sandy , have you had any of the biologics before rituximab , Enbrel worked for me & CRP went down to single figures but I had bad reaction from the injections so came off it , it caused by the preservative in the drug & same as some of the other biologics but what they did not tell me was that you can get Enbrel without the preservative so its worth a try

dont blame you for not taking the risk with your eyes , most of us with RA got enough problems with our eyes without something else
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Date: 16.10.2013
From: sandy

Subject: Re: how do I choose ??

Hi Colin - I was on humira for a while but I had bad reaction to it - I kept getting feelings that I can only describe as like electric shocks - apparently my body created antibodies against it and they were attacking my nervous system so I was taken off it ... it seems all these drugs have lousy side effects!...as for the eyes .. I've got dry eyes and mouth (another wonderful part of RA!)and eyes are a big worry for me as I said before - I think one of the big concerns about any of these drugs is that nobody really knows what the long term effects are but we all have to take them as the pain is unbearable - catch 22 situation ..
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Date: 17.10.2013
From: Colin W

Subject: Re: how do I choose ??

Sandy , I would talk to your rheumy nurse/consultant about the reaction you had with humira , it's similar drug to Enbrel , but golimumbab/simponi is one of the newer anti-tnf & it's diferent without the preservative http://www.simponi.co.uk/SimplyForMe

my eyes are the same & got scleritis which is caused by inflammation under the eyes , realy think you need to ask loads of questions so they can get you the right drug
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Date: 17.10.2013
From: Eve

Subject: Re: how do I choose ??

I'm not able to help but a very interesting thread for me as I think I might be in the same position come December as I'm having issues on Methotrexate (liver enzymes shot up and taken a while to come back down) and couldn't tolerate sulfazalsine and they took me off hydroxychloroquine as I was having blurred vision but it turned out the arthritis was causng that, get really dry eyes and mouth and bouts of episcleritis etc... so good to know about the newer one.

I hope you get the info you need.
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Date: 17.10.2013
From: Colin W

Subject: Re: how do I choose ??

Hi Eve , I had the same thing with Methotrexate & liver enzymes went up to ALT 170 , they increased my folic acid to 5mg six days a week & now been back to normal for years , how much folic acid they giving you & ask to have it increased

be careful with episcleritis , I used to get it & last for 4/5 days but chances are you could get Scleritis at some point , same thing just worse & wont go away without treatment
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Date: 17.10.2013
From: Susan

Subject: Re: how do I choose ??

Hi, I was very interested in your comments about tocilizumab. I have never heard of blindness being one of the side effects of it. Where did you hear that? I have been on it for over 6 months.

regards
Susan
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Date: 17.10.2013
From: Paula-R

Subject: Re: how do I choose ??

I've just re-read my original post and I really need to go to Spec Savers or carefully read every single word I put before I press the accept button.

I am happy to announce that I AM in clinical remission due to my magic potion *Enbrel*. My last CRP result was 8. I was in remission within the first three months.

I had to take steroids prior to taking Enbrel and I managed to wean myself off them mid January this year, I have not taken a single pain killer since. I do get the odd bit of stiffness, but nothing really.

It really is a difficult decision to be faced with and I think it is so unfair if your are left to make it yourself and need help. What works for one, may not work for someone else. We are all different.

Have you tried talking to your hospital for a bit of guidance? If you don't ask they make think you are OK. Ask them what drug they have had the best success rate with.

Another thing that swayed me towards Enbrel is the fact that it is easier for travelling with. It can be kept out of the fridge for up to four weeks (not to be put back in the fridge once taken out) as long as it does not exceed 25 degrees.

Good Luck with whatever you decided and I hope with all my heart that you and anyone else reading this thread in the same situation get as good a result with whatever choice they make that I did.

Paula-R
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Date: 17.10.2013
From: Sandy

Subject: Re: how do I choose ??

Hi All ...thanks for all your comments ..Hi Colin I think that with what youv'e said it looks like golimumbab might be the one I ask most about or Enbrel without preservatives as I didn't realise that my reaction to the humira might have been caused by preservatives as no one has ever mentioned this to me ... saying that, my specialist talks over me or at me but very rarely to me ! (he acts as if I'm just a specimen most of the time - his bed side manner leaves a lot to be desired !) I will be asking a lot of questions when I contact them ! Hi Susan - I looked up all the drugs on google because the leaflets they gave me said very little in detail and the blindness was stated on a site that listed all side effects (it was a very rare one - but under the circumstances with my family history its not a risk I'm prepared to take however unlikely it is).Eve - I hope they get your drugs sorted out - it seems to be trial and error for all of us !
Paula - I'm really pleased for you that you have found something that has put you in remission - I haven't managed that yet but fingers crossed !
Take care all and thank you x
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