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Date: 21.12.2009
From: Liz

Subject: Anti-TNF Drugs - Assessment Tomorrow

Hi all only just come across this site - I am 27 and was diagnosed 2 years with RA to cut a long story short after trying everything and getting varies side affects I am being assessed for Anti-TNF Drugs. I have been given a choice of 3 and been told up to me which I go for I know everyone is different and all affects you different but wondered what the experience is of others is? I've ruled out Inflixmad (Remicade) as can't commit to time for drip as work full time and single mum. But what are people's experiences of Etanercept(Enbrel)or Adalimumab(Humira)? I am still on methotrexate, diclofenic, sulfalzine and steroids (sorry for spellings) x
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Date: 22.12.2009
From: Helena

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

Hi ya
I'm in the same position as you and fighting the Consultants all the way. I take only Indomethacin at night to get through the 3 am pain barrier and be able to get out of bed in the morning. I was told many years ago that the arthritis will not kill you it is the drugs as two consultants told me on two different occasions. Since my daughter was born in 83 (during the pregnancy I had to stop taking everything) I have been on a diet - not a special one - just a non manufacturered food one. ie. as many fresh vegetables as i can anything except beetroot (its acidic). Fruit except the acid ones i.e. oranges and lemons and no pork (its indigestable), no messed around food like prepared meals, pies and sausages, no coffee and alcohol, no smoking - just good old plain living and honest food and fruit teas. Anything that doesn't contain E numbers, additives and colourants. The kind that is cheaper to buy and what your grandmother made. And its brilliant nutrition for the children. It took me two years on this diet when i found I could run after my toddler having not run for 7 years cos it was so so sos bad...

I worked full time and brought up two children, one disabled, as a single mum. I too have had all the side effects from the DMARDs and was told that TNFs are the next frontier! Having looked up the drugs on the internet I am absolutely not keen to go ahead. The sides effects are that one of them gives you TB and you can't take it until you have had the jab if you were missed at the aged of 15. TB is on the increase because of poverty and you will find it difficult to get an appointment probably because the clinics are full (if you haven't had the TB jab that is)... another of these drugs side effects is cancer of the skin, the third is obviously a new one and I do not know the side effects of this. All this information was gleaned from the internet - the stuff they do not tell you cos they have a job to do and quotas to fill; and forget that this is your illness and body not theirs and you have to live with the consequences which most of the time is irreversable. The Etanercept (by your info) must be the one that you have to self inject into your tummy three times a week possibly...These drugs have been around in the US since 1999. But they are new in the UK and cost a fortune to give to you. Having spoken to Bournemouth Hospital they told me that only 80% of people get help with their arthritis from using these drugs and like me you have had all the side effects of the other nasty DMARDS that give you all sorts of problems including shortening your life - that's why you have been chosen! I refused steroids because I didn't want the weight gain and it destroys your liver too over time and you become addicted I believe. I have realised that the consultants play with you, you are a pin cushion and experiment. Because we are all individuals and not clones. What works for one won't work for another. The drugs take so long to get any benefits from that in the meantime the doctors and consultants do not deal with your pain effectively, or the depression you go through - they do not know how to - or help you understsnd the dsability you will face eventually. I have felt over the years that i have been duped - they did not look at the whole person like my lifestyle and food intake. It took then 4 years to tell me that there is NO cure. All they can do is help you manage yourself... if you want them too. All i can say is explore everything...

I have had RA now for 37 years and I'm not 50 yet... - Recently I have had cause to talk to a Manager Nurse at a different hospital that deals with hospice care to the dying and therefore she and her staff have had experience of seeing arthritic patients at the end of their lives. She said to me that it is about controlling and managing the pain the arthritis will progress regardless whether it is slowly or fast and the deterioration will continue. After the pain killers and anti inflammatories the only next stage to control the pain is morphine which is addictive and once you are addicted your body at some point will become immune and then there is absolutely nothing else to control the pain. Like me you are young and its a multi faceted thing. For me its been about one controlling the arthritis, two the pain and keeping the rest of my organs healthy. The diet has really really helped as I was on 500 tabs a month! Now only 28 with the diet... I have had 6 ops on my hands and that is it apart from now having to wear a different kind of shoes... Try Crocs if you have problems with your feet. I wear the toe posts as I have crooked toes - its like walking on air as I now only walk on the sides of my feet as I can't put them down flat on the floor.

I also recently worked for a disability Company and met many other RA sufferers. We all had one thing in common - poor family relationships, incredibly sensitive to people emotions and poor diets as a child. i really believe that this 'stress' was what got the ball rolling. Endorphins are great when released in times of anxiety and stress but for no more than 20 mins. After that they work against you. So if you are in a stressfull job change it or find time to relax away from it... time to yourself or meditate - time to chill - really is good and positive for arthritis. My other aim was to get my children to 18 and not suffer from this like me, so they had a healthy future by providing a destressed environment for them and of course the natural diet.

I am sure that there are people out there who will swear by TNF (even though like all drugs it has killed people) but these nasties are not to be taken likely and you, and only you have to live with the consequences which will have a knock on effect to your children and relationships. So take the advice from the Consultants with a pinch of salt and do your research ... then make a decision!

I hope this helps and if you have any questions i will be happy to answer them

x
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Date: 22.12.2009
From: Verity

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

Hi Helena
I understand your point with the healthy eating. Im 24 now and have had RA since the age of 6. Whilst growing up I experienced a large variety of alternative therapies, all difficult to understand when youre young. I tried the Margaret Hills diet. I really did fight with it but i ended up with an eating disorder a few years later. I know in my heart that diet could help significantly, but whenever I try, end up getting obsessive so have to veer away from it.
I have my second Anti TNF scoring tomorrow and am nervous as it is because its not the sort of thing anyone actually wants to go on! I just feel right now, at this point in my life, I have no choice but to try. I could risk the side effects and the scare stories and it possibly go well or I could be in a wheelchair by the age of 30. Sometimes its just a last resort.
Thanks
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Date: 23.12.2009
From: Liz

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

Well I had my appointment and have been approved - but it has really knocked me for six - feel very fed up ! The consultant was really nice and said it will take up to 8 weeks before I can start so if change my mind I can so will carry on with research. The annoying thing is I was hoping to come off the methotrexate as its causing all sorts of problems but they won't agree to me me coming off as they think it is helping my arthritis a little bit - I just feel at what cost - I feel sick all time, loss of appetite and have bad reflux on both tablets and injections. My biggest annoyance is not being able to come off steroids I have been on them now for year and half and gone up a dress size - I know its vain and I shouldnt worry about weight but I have never had to worry about my weight before and when you are feeling like this any little thing makes you feel better. And with all the information about affects of all these drugs on preganacy and limiting where to go on holiday (i was hoping to go to Thailand this year but not allowed injections) feel like my choices are being taken away. But then at same time I need to get this under control for my daughters sake who is only 3 x
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Date: 23.12.2009
From: jill

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

Hi All that posted above, Verity I totally agree with u, Helena I do understand what u r saying, and yes we dont get told all the side affects of the drugs, However, my sister works in a hospice and most if not all of the poor souls in there suffer from cancer, tumours, strokes, u name it, but no one has died to to the affects of Arthritis Meds.......... anyway I take MTX along with Enbrel......Had NO side affects with Enbrel at all.....MTX yes i have, sicky feeling etc..... Helena the Enbrel cost ten grand per sperson a year....... do U think u were told people die from the meds early becos of the costs?? u say the consultants(two) of them told u? mb there particualr hospital mamagement didnt want anyone on them due to the cost and their budgets run riot over the year, so they try and rein in the cost a bit?? just a thought..... also for me, its the NOW that matters, the quality of My life now!...think many of us think that way, its about now and the pain etc.... I personally dont care if the meds cut my life off a few years short, IF the meds i take now, control my condition....Also it mite be worth a try say short term and c if their id a difference to R.A. or any other type we have(I have Inflamatory arthritis, 7 ops to date, and need there more)..I have added complications which everyone in here knows about, lol so wont bore u with it, But I personally will give UP my Enbrel if I do not see a HUGE difference in my health in say two years, after my horrible ops, Need fusion of spine(already had spine op) DDD, Reiters etc, so they r the complications I have, so Need to try these Meds...But I hear what U r saying.......

Liz, Enbrel has been gr8 for lots of people in this forum(ive been coming in here most days since year ago ish, so read all posts re Enbrel!).....
Enbrel in its self I dont beleive causes obvious side affects like MTX does, i.e. sickness, tiredness.......infact in terms of side affects, I beleive the Enbrel pen im taking has helped my MTX side affects lessen!! so good luckl and let me know how u get on with it....does take about 8 weeks to Kick in....

hope this has kinda been helpful, but dont think there is an illness out there, and with the Meds we need to take, dont go without risk.....like Verity said, wheelchair verus Meds..... Meds is my last resort at mo....... but i get checked every month, blood tests etc.... reviews wvery three months with Bio nurse, been on Enbrel way over 18months, and MTX 3 years(sulfasalzine made me very ill) anyway, I agree with Verity, try the last resort, But I must admit, dont stay on them forever, mb they cld knock some of us into Remission, and mb some lucky ones wont need to go back on them....... I will c how I am after my ops, and give it two years as of now....... I think if people have been on the Meds, say, almost all there life, mb sadly, they r the ones that might suffer later on in life, I do think its how long we take them for will be the prob ?? anyway...Goona Cheer us all up now and say LOOK FORWARD TO CHRISTMAS...POSITIVITY IS EVERYTHING....Merrry Christmas all xxxx ps sorry for rambling xx
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Date: 23.12.2009
From: Liz

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

Its Enbrel I am going to start on, it is a big decision but I can't think about future too much as its the here and now I am worried about I want to be pain free as can be and be able to do things with my daughter whilst she is young without being knocked for six just for going swimming. Thats the biggest thing for me I don't want my daughter to only know me as someone who can't always pick her up, or do things with her, who is always tired. And now I am grateful I had her when I did. Like with any drug know one really knows the real affects and its different for different people. I am trying to look on positive like that I was persistant enough with my gp to have it diagnosed before it done permanent damage to joints, I've been lucky in that respect not had any ops and yeah they are causing some digestion problems(being tested now for H-Pyroli) but a year ago I could hardly walk, couldn't lift duvet let alone my daughter out of her cot and getting down on floor to change nappy was a challenge - thank god she is toilet trained now and in a proper bed. Now I just have to be firm and not carry her as much as she'd like - which makes me feel so guilty but in a way it means she is learning to be independent x
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Date: 23.12.2009
From: Verity

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

Hi Liz, I had my second anti TNF scoring today! My consultant is on hols though so gotta wait til next week lol. Personally, I think, everything is worth a go. I tend to think of now more than the future. It must be awful struggling with your little girl. If you go for the Anti TNF you can always come off them if you change your mind.

Also, to reiterate what Jill said...... Happy Christmas everyone! Only another full day and its snowing here!!! Woohooo!
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Date: 28.12.2009
From: sandra lowe

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

hi everyone just found this site and was reading all your comments on anti-TNF drugs and felt i had to put my pennies worth in i have had RA for 32 years tried mxt and it made me so sick went on the injection to see if that would help didnt work then finally went on enbrel and mxt about 20 months ago but stil got sickness but came off mxt myself 12 months ago and havnt looked back havnt taken many painkillers either so im just glad to be on enbrel
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Date: 28.12.2009
From: Verity

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

Hi Sandra, its nice to hear more positive info on Anti TNF as Im awaiting a decision from my consultant as we speak!
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Date: 29.12.2009
From: sandra lowe

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

hi Verity glad i can be of help i forgot to mention i did try the one that you inject every 2 weeks but within 6 weeks but had a bad flare up so went on the enbrel, but was talking to a friend the other week and she is on that one and its working for her so it works different for everyone so hope it went well
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Date: 30.12.2009
From: Verity

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

I think thats the frustration isn't it. Theres no definate medicine that 'works'. Just have to try them all!
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Date: 01.01.2010
From: jill

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

Hi Sandra, ive been thinking of coming off the MTX and c how i get on with just Enbrel, I always new it is the MTX that makes us feel sicky feeling, jsut hate that, its like morning sickness!...mite talk to nurse, see what she thinks.....btw snadra, i sent a post to you asking how long u had artha etc...so now i know, cos i found this postin g lol..... no need to reply to other one if u find it , glad u r in the forum, we need lots new people to keep it going, so welcome tc Jill
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Date: 07.01.2010
From: Howard

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

The cheapest and qualitative preparations here http://canadianrx-drugs.com/?ref_id=3327
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Date: 07.01.2010
From: Verity

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

I could never take anything I wasn't prescribed or from the chemist. Id get incredibly paranoid!
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Date: 07.01.2010
From: Lynn B

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

Who is Howard, I WOULD NEVER TAKE ANY DRUG unless it was prescribed by A DOCTOR. lynn B.
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Date: 08.01.2010
From: jill

Subject: Re: Anti-TNF Drugs - Assessment Tomorrow

LOL Lynn,,,Howard ? Nutta mb lol we get lots in ere......
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