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Lorraine5
#1 Posted : Friday, February 19, 2010 12:14:31 PM Quote
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what is tnf is it tablet injection please could you tell me and anyone whos on it how youre getting on with it are there diffrent ones i might be going on it
would just like some information is there a sight on here for that information about that drug thankyou lorraine
dorat
#2 Posted : Friday, February 19, 2010 12:25:01 PM Quote
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Hi Lorraine,

There are different anti-tnf drugs.
I am on Humira, which I inject myself once every two weeks.
It has helped me a lot since I started on it, Have your docs suggested you go onto anti-tnfs?

Doreen xx
Lorraine5
#3 Posted : Friday, February 19, 2010 12:45:35 PM Quote
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yes my specialist new one said to see ra nurse and he called it something then tnf and to disguss it with nurse he also said if i get really desprate in mean time to have steroid injection but going to try to hold on i see nurse in marsh is humiria the best one i see alot of people happy on it
dorat
#4 Posted : Friday, February 19, 2010 1:28:27 PM Quote
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I think they are all very effective, I took part in a trial for Humira, that is why I ended up on that one.
Your rheumy nurse will give you information on the different drugs and usually you can decide which one to take, or they may just suggest what they think will be best for you.
She will assess your joints to make sure you fit the criteria for anti-tnf so it's best if you can hold off the steroid injection so that she gets a true picture of your joints and any inflammation.
Good luck with it Lorraine, Lots of people say the anti-tnfs give them back their lives.

Doreen xx
lyn2
#5 Posted : Friday, February 19, 2010 3:56:57 PM Quote
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Hi Lorraine

I think lots of the members of the forum are on anti-tnfs, including me. I think they are all given by injection, but don'tlet that put you off, it's easy to learn how to do it and it doesn't hurt.

I started off on humira, that didn't work too well, so I'm now on Enbrel, and that has given me a few better years.

Lyn
Sheila-R
#6 Posted : Friday, February 19, 2010 4:06:03 PM Quote
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Hi Lorraine,
I have been on two Anti TNF treatments. I was given a choice and opted for Humira which I self injected once a fortnight using an epi pen, it was very easy as you just press the end hold it there for something like 10 seconds and that's it. I had no side effects but for me it didn't help the RA. I then moved to Enbrel a pre filled syringe that again I was taught to self inject. Again no side effects but after six months rheumy and I decided it wasn't working to help the RA. However there seem to be lots of folk who've had success with one or either of these and say its changed their lives for the better.

The only disadvantage I found with Enbrel was that on days when my hands were really bad it was sometimes difficult to inject but as Humira is an epi pen that problem didn't occur. I don't know if Enbrel comes with an epi pen now maybe somebody else knows?

Thinking back I also had to have tests to check I didn't have TB before I started the treatments.

The rheumy nurse gave me a leaflet about both of these and I went for a counselling session about them to discuss any questions I had, then the health at home nurse (the company that deliver the drugs to your door) came to teach me how to inject and came back the second week to check that I could do it, so there was lots of help available.

I agree with what Doreen says about the steroids though, that if you are taking a high dose to be mobile, it masks the symptoms and sometimes the blood results which meant when it was first discussed I was only borderline for moving to anti TNF .

Hope that helps
Best wishes
Sheila
Kathleen_C
#7 Posted : Friday, February 19, 2010 4:17:31 PM Quote
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Hi Lorraine,

I`m on the anti-TNF humira, which was the one my rheumatologist thought would suit me best. I`ve been on it now for over two years, and it has made a considerable difference to my quality of life.

The epi-pen does sting, but is easy to use, and I always make a note on the calendar when my injection is due, and which bit of me I injected last time.

Good luck,

Kathleen x

LynW
#8 Posted : Saturday, February 20, 2010 1:17:58 AM Quote
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Hi Lorraine

Good to hear that you are being considered for anti tnf therapy. These drugs are now used much earlier in the disease process and therefore give a much better chance of control before joint damage occurs. I have been on Enbrel for four years now and for the main part it does exactly what it is supposed to, although I am also on methotrexate, prednisolone and naproxen, but could perhaps be better. I was previously on Infliximab, another anti-tnf drug.

My injections are twice weekly by pre-filled syringe. Very easy to use and with practise can be delivered fairly painlessly. Enbrel has been tested using the epi pen** but I understand there were quite a few problems so I don't know whether has been introduced for Enbrel.

As others have said do try to avoid the steroids if you can as they will most definitely give a false result and may just disqualify you for anti-tnf treatment. Good luck with your assessment.

Lyn x

** Things have moved forward it seems and Enbrel is now available as an Enbrel Myclic pen.
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

jenni_b
#9 Posted : Saturday, February 20, 2010 4:25:30 PM Quote
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hi

The anti- tnfs are biological treatments and the guidelines say you have to have failed 2 lots of DMARDS (mtx, sulphazalazine amongst others) to get sent for them.

They are very powerful drugs, they have side effects and this has to be weighed up alongside the benefits.

I did very well on enbrel but in the end had to stop it and was allergic to the humira. As with all the drugs the main risk is serious infection- but to be WELL (or feeling really so much better) is sometimes worth the risk. PLus- the drs know a lot more about the drugs now then when I had the enbrel 10yrs ago on the first trials.

Love

Jenni x
how to be a velvet bulldoser
smith-j
#10 Posted : Sunday, February 21, 2010 12:17:04 PM Quote
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Lorraine

I have just been approved to start on anti-tnf's after failing on three DRAMDs. I had to have two assessments one month apart. They look at your blood test results, and go through each joint with you and ask you whether they hurt. They then ask you on a scale how active you think your RA is. After my first assessment when they could see I was in a lot of pain, they did not want to give me a steriod injection until I had my 2nd assessment as this would give false results. The second assessment was on Friday and I nearly had to crawl into the appointment as I was in so much pain. It is the first time I have ever passed an examination by having bad resultsSmile. They then gave me a steriod injection and today I have started to feel slightly better.

At my first assessment I was given leaflets to go away and decided which anti-tnf I would like to try. This was quite overwhelming as it seemed such a big decision. I asked questions on this forum and looked everything up on the internet I could find. I still could not make a decision which one to go with. There are some worrying possible side effects but I have decided for me that it is worth the chance of my getting back some quality of life which has decreased beyond recognition over the last twelve months. When I got to the appointment I said to the nurse that I did not know which one to go with. She told me off the record that the Consultant preferred Enbrel but I had to be given the choice as directed by the government under patient choice. I decided to go with the Enbrel. This is available in a pen to inject so no needles visible (thank god) and a nurse is going to come out to the house to show me how it is done.

I think Rheumy's are very keen to get people onto anti-tnf's as soon as they can, as the earlier you start, the less damage is caused to your joints. I was only diagnosed in March 2009 so it has been a bit of a whirlwind with medication over the last twelve months.

I hope that you get approval and that it will work for you.

Jackie
xx
Lorraine5
#11 Posted : Sunday, February 21, 2010 5:57:29 PM Quote
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so how many tnf are threr what they called
Wolf52
#12 Posted : Sunday, February 21, 2010 6:28:50 PM Quote
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Hi all am reading this topic with interest as I have my assessment for anti tnf on 16 March.

Can't offer any advice Lorraine, but pleased to hear you have been approved for the anti tnf.

Nina x
barbara-o
#13 Posted : Sunday, February 21, 2010 6:48:57 PM Quote
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Hi Lorraine,

I started Humira at the end of January and have noticed an improvement in my RA. To answer your question, I think there are 3 main types of anti-tnf's drugs available on the NHS: Enbral, self injection with a syringe (x2 weekly?); Humira, self injected with an Epi pen fortnightly, and Rituximab which is administered by infusion as a day patient in hospital.

I was put on ANTI TNF because my liver could not cope with DRAMDS, and do not consider my RA to be that bad; however, bad enough to know that after 6 months of being on no meds apart from pain killers and one steroid jab that I had to go down the ANTI TNF route.

Good luck with your appointment,

love,

Barbara
XXXXXX
Lorraine5
#14 Posted : Sunday, February 21, 2010 7:18:19 PM Quote
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i had infusion last year was ill whilst it was being done had to come off it quick
joeyvt
#15 Posted : Sunday, February 21, 2010 7:29:30 PM Quote
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Hi Lorraine,

The three anti-TNF's are: Humira (fortnightly); Enbrel (weekly) and Infliximab (infusion every eight weeks)

Rituximab is another biological drug that destroys the B-cells in the body that are responsible for inflammation. This drug is considered when you have failed on two of the previously mentioned anti-TNF's.

Joanna
Mandy_M
#16 Posted : Monday, February 22, 2010 9:57:32 AM Quote
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Very good to be reading this thread - thanks all! The powers that be are just about to add a 4th drug (leflunomide) to the Sulpalazine, Hydroxy and MTX. If this does make a difference, then the MTX will be reduced. If not, I'll be put forward towards the Biologicals.

Whilst I don't consider myself 'bad' at the moment, the fatique is causing me more of a problem than the joints are. I guess that If I got no worse, I could live with the plateau I am on, but I really would like a little more of my life back.

It seems that the Biologicals are quite a big deal, as I was told the nurse would spend up to an hour discusssing the various drugs and possible side affects. But I am encouraged by the posters who say that they feel better on them, but how hard it is for us to balance up the benefits and draw backs of these things!
Hannah-L
#17 Posted : Tuesday, February 23, 2010 2:10:33 PM Quote
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Hi Lorraine,
I am on the Anti-TNF etanercept (embrel). taken by injection weekly.
Has managed to get everything under control, it's a fantastic drug.

good luck! x
Joy
#18 Posted : Tuesday, February 23, 2010 11:27:32 PM Quote
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Hi Lorraine

I started Enbrel last March and I have found it very effective.

When I first started Enbrel came in a pre-filled syringe and then last Sept/Oct it was changed to the MyClic Enbrel Pen. To begin with I hated the pen I found it painful but as the weeks have passed it has gotten nearly painless. The pen is very quick and easy to use. I think it varies from hospital to hospital what they stock. Mine only stocks the pen for 50 mg.
Joy
Hayley-F
#19 Posted : Tuesday, March 23, 2010 1:56:27 PM Quote
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I am 24 and have had RA since the age of 15 i have had all sorts of treatment methatrexate, sulfasalzine, Plaquiel, the usual i am now being told that i should go on THF drup Humira, umm not sure what to do?
Hayley
poppy
#20 Posted : Wednesday, March 24, 2010 1:28:15 PM Quote
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Hi Lorraine
I have just come off humira as it didn't work for me.I am now on enbrel and i had the choice of syringe or pen,i opted for the pen it is quite easy to use.

Poppyx
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