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Date: 14.11.2009
From: paul

Subject: enbrel

Hi,ive had RA for 13 years now.Seem to have had every drug under the sun, Indocid,prednesolone,methotrexate leflunomide etc etc etc. Im about to start enbrel and was wondering if anyone out the can let me know how they got on with it. Does it work? How long did it take to work? any side effects with you?
Although there is a lot of info online i cant seem to find a support group or forum where people are talking about it and i can get info.
thanks in advance Paul..
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Date: 14.11.2009
From: shaz

Subject: Re: enbrel

hi paul i not on enbrel but i think jill is and she will fill you in about it when she comes on she usually on a t some point everyday so watch out for her posting sorry you not had much luck with other meds hope this one has some effect on your ra, we all on different kinds of meds on here and all got differant arthur but we do try to support one and other and listen to each others moans when we having a hard time of it, we also try to have a laugh its not all doom and gloom,hope jill as some answerrs for you take care shaz
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Date: 14.11.2009
From: paul

Subject: Re: enbrel

Hi thanks for the post i will look out for her. it would be nice to talk to someone already on enbrel..
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Date: 15.11.2009
From: lisa10

Subject: Re: enbrel

hi paul

i was starting enbrel too, infact next week but had a bout of iritis so now have to start on humira, let me know how you get on, i will too good luck ive read if combined with mtx its quite effective, good luck
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Date: 15.11.2009
From: Kaz

Subject: Re: enbrel

Hi Paul, heard its meant to be good.

Keep us updated with how it works for you.

Im sure you can't get it until you have tried all the DMARDs.

Karen
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Date: 16.11.2009
From: paul

Subject: Re: enbrel

Hi Karen, you have to have tryed at least two DMARDS and have to qualify via a scoring system of your pain and infalamation.
I have the nurse coming to give me a demo of how to inject on wed evening. Will let you know how it goes
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Date: 19.11.2009
From: phil

Subject: Re: enbrel

ive been on embrel now for 10 weeks but only a slight improvment and the only side affect i get is being dizzy and disorientated for a couple of days after the injection
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Date: 19.11.2009
From: paul

Subject: Re: enbrel

Hi, thanks for the feedback, i am starting Enbrel at 11.00 tomorrow morning. A nurse is coming to talk me through the first injection and then stay with me for half hour after incase of any problems.Nervous about first injection as i will be under pressure with someone else there waiting for me to perform...
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Date: 20.11.2009
From: Jill

Subject: Re: enbrel

Hi Guys, Hi Paul....Paul ive been on Enbrel just over year and half....along with Methrexate.... the two together definately slowed up my flare ups,....where i was having flare ups every other months, since being on enbrel, i still get flare ups, but last about 4 days, and mb 3 times a year........I dont have any known side affects, I do Have side affects, but think they come from the Methtrexate!......I get absesses.....anyway, I think u will benefit from this med.... for me its the last result...... however, I have added complications, I have Reiters disease, and it has left me with Inflamotory arthritis, sl altho I have Joint probs, the Reiters still attacks my tendons, and cartledge....for some reason, the meds dont seem to be able to stop the Cartledge degeneration(I have DDD) which is im sure u know Degeneration Disc Disease on top....lol...falling apart!!...Im sure I wld be even better if say I didnt have Reiters, and was just arthritis..... hope that makes sense....... I think Enbrel is amazing, changed my life, as I said I still have probs, I do get sicky, nauseas etc....fatigued(been told by biologics Nurse, tiredness is affect of all the meds im on) im on Opiates for pain(morphine etc)....... I still need another spine op due to the DDD, but thats how it goes....... so in a Nutshell......yayyyyy for Enbrel....pls let me know how u get on, I havnt been on much as ive been ill, neck is sore..... Lisa U will be fine on it too...take care now

Love Jill
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Date: 20.11.2009
From: paul

Subject: Re: enbrel

Hi,Jill thanks for the message,,sorry to hear about your added probs as if RA isnt enough... I had a nurse visit me this morning and talked me through the first injection. Its now 4.00pm and seem to have had no instant reaction, dissiness tiredness etc. off to work at 6.30pm so hopefuly it will stay that way.I had no problems doing the injection,think it is all in the mind.All good so far...
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Date: 21.11.2009
From: jill

Subject: Re: enbrel

paul hi there, thanks fpr your reply, im so pleased.....i use to jave syringe injections, but now cahnged to Enbrel Pens....so much easier.... mind u, other day, I had my injection by bed(take mine at night) it has been in the fridge and u have to wait 20 mins to go to room temp......anyway, I was all comfy, but I couldnt be bothered to get otta bed to inject in my tum, so i decided to Jab it into my thigh........ARGHHHHHHHHHHHHHHH lolol.......my fellla said Told ya so!!! etc lol.....I went straight into the biggest Vein in my leg.....cos I didnt look lol...just jabbed it in...... well I wont be doing that again, thats for sure...... I never felt any side affects with enbrel....so well done U..... take it at night, cant remember if u r on Methtrexate too...if u r, do both on same day, but at bedtime...sleep thru any side affects..... well done Paul

take care now

Jill x
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Date: 16.12.2009
From: Julie

Subject: Re: enbrel

Hi Paul like you and the others on here i've been on most of the drugs you have listed. And have been on enbrel for over five years now. Like jill i've had no significant side effects with it. It has been the best med that i have been on so far. It does not take away all the pain but it does reduce it significantly. The swelling is far less and when I do get a flare up it is mild in comparison to what it used to be. Its not a cure all drug but I have found it to be the most effect med so far. Good luck
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Date: 17.12.2009
From: paul

Subject: Re: enbrel

Hi julie thanks for the posting. i have been on enbrel for about 3 weeks now and havnt noiced any change in my condition whatsoever.
how long did it take for you to feel the benifits?
Its a bit depressing to keep injecting myself twice a week and no difference.And i hate needles...
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Date: 17.12.2009
From: Lynne

Subject: Re: enbrel

Hi Paul

Im also on enbrel and have been for about four years too. I Think it took about six to eight weeks to kick in. Be patient and persistant. It is one of the best meds I've been on, there has been no side effects for me and its not as toxic as the other meds. so you don't need as many blood tests.Good luck let us know how you get on
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Date: 18.12.2009
From: jilll

Subject: Re: enbrel

Hi Lynne, how often do u get your bloods done? been told have to go to gp every 4 weeks.....such a bore!
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Date: 19.12.2009
From: Lynne

Subject: Re: enbrel

Hi Jilllleeyy Mine only gets done once every six months. Not on lots of meds like you Jill, and they said enbrel does not cause many side effects?
So not too bad on the whole
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Date: 23.12.2009
From: jill

Subject: Re: enbrel

Hi Lynnney......Lynne have u heard that the serious side affects of our Meds can Kill us? and shorten our lifespan? have u ever been told that? only asking as I read a posting from Helena under TNF.....I know I was never told that, had I, I wldnt be taking it....whats ya views on this? xx
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Date: 31.12.2009
From: Lynne

Subject: Re: enbrel

Bummpety Bump Bump You all seen to ask the same questions about this med so here it is again
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Date: 01.01.2010
From: sandra lowe

Subject: Re: enbrel

hi everyone im new on this forem and nice to hear peoples veiw on the enbrel im on it nearly 2years and havnt had any side effects other than the area i inject gets red and itchy for a couple of days i have to get bloods done every 2 months so im glad to be on it, all the years on different meds, best thing since sliced bread!!!
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Date: 01.01.2010
From: jill

Subject: Re: enbrel

Hi Lynne, I asked about the enbrel cos some person posted a message saying that he consultants told her it will Kill her!! ... so was aking U your personal oppionion onn that, not the enbrel as such...... know all about enbrel, cos im on it.... blimey been 13 months now...time flies, happy new year Lynney xx
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Date: 04.01.2010
From: paul

Subject: Re: enbrel

Hi been on Enbrel now for about 6 weeks. no change whatsoever.Is this normal or should i be seeing some improvement by now.....Am i being inpatient... Paul...
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Date: 04.01.2010
From: sandra lowe

Subject: Re: enbrel

hi paul whats the other injection for as you only inject once for enbrel, i would have thought you should have seen some slight improvement,but we all are different in how we respond to meds
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Date: 05.01.2010
From: jill

Subject: Re: enbrel

Hi Paul, to be honest, I think 6 weeks is still a bit early yet, hang in there ok, it might be a case that IF(and im sure it will work) but maybe u need MTX along with it? do u take Methtrexate(MTX). you mention u take two injections? whas the other injection for? MTX perhaps? can understand your frustration, been there, but u will c a difference, at end of the day, I believe it depends on how bad the disease is for a person, I know we have to be bad if taking Enbrel, but maybe it takes longer in some than others......BTW arnt all men inpatient anyway LOL....take care ok x
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Date: 05.01.2010
From: paul

Subject: Re: enbrel

Hi, thanks for the reply.
The two injections are both enbrel 25mg Tue & Fri.
I am also on Leflunomide,indometacin and Tramadol. with some paracetamol thrown in for luck.Next injection today.
Still waiting for any signs of inprovement but as you say will have to be patient....
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Date: 05.01.2010
From: Lynne

Subject: Re: enbrel

Hi Jilley No not heard that one about cutting your life shorter will ask when i see Rheumy again. Think I would rather not be in agony for all of my life even if it was a year or two shorte,r than be in agony all of my life live longer but not enjoy it for the constsnt pain.
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Date: 05.01.2010
From: Lynne

Subject: Re: enbrel

Hi All paul is correct there are two ways you can take enbrel,
one is 50mg once a week or
Two. an injections of 25mg twice a week.
I know this because Im on the 50mg at moment but am changing to 25mg injections twice a week. The 50mg injection seems to ware off by the end of the week.
Ive been on enbrel now for about four years and had no side effects apart from the welt at the injection site. The meds can take upto two months to kick in so bear with them, Hope this helps
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Date: 06.01.2010
From: Jill

Subject: Re: enbrel

Hi paul....ok understand now, im a bit thick lol, cos I use to take two injections broken down like that...now have 50mg onvce a week, find that better at the mo....give it time, u can always change if the Bio Nirse thinks u can have 50mg once a week instead of two, I also use the Enbrel Pen instead of the syringes, much better......like Lynne says, Hang in there, been on Enbrel over a year now....time tells ok TC Jill x
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Date: 06.01.2010
From: Jill

Subject: Re: enbrel

Lynney I think it was one of those one of nitwits that pop in etc, and I agree with u, mind u, having a crap time t the mo Lynne, dont know if ya read my posts, but seems gotta have two shoulder ops again, due to Impingement, already had those ops 3 years ago..pain is dfreadful, and recovery is long and rotten, plus gotta have Fusion this year.... not a happy gal....taking all the correct therpays as u know, yet shoulders need operating on again so the rhummy says, saw my xrays and said no wonder my neck is so painful.... my Bio Nurse rang me with the results! so new it wasnt good...... oh well.....seeing surgeon for shoulders this month, forgot date lol, and soine surgeon 22 this month! hope ya well xx ps u on fb now? u can find me on it if u want...ask val on fb where u can find me....dont want mad wayno knowing my full name lol....he might send me a cart load of horse manure Lololol
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Date: 06.01.2010
From: Lynne

Subject: Re: enbrel

PMSL at the manure joke.. sorry to hear about you forthcomming ops I know its not a pleasant thing to look forward too.
No not on fb tried it but didn't like it much its too busy for me.. I like things quite.
Take care you
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Date: 08.01.2010
From: jill

Subject: Re: enbrel

LOL Lynnne, lucky u dont live near my Nut house then.....tc x
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Date: 03.05.2010
From: Jeanie

Subject: Re: enbrel

Hi - wondered how Paul was getting on with the enbrel ?

I`m really down and depressed because I thought it would at least give me some relief but think I`m actually worse than before I started it :(. Used to be on a cocktail of MTX and Lef which worked for 18 months or so then suddenly I was violently sick everytime I took them so they switched me to MTX and Enbrel.

Started in Jan for 3 weeks then came down with a bad cold which stopped me injecting for 4 weeks. Started again end of Feb and now it`s the begining of May and still no improvement :(
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Date: 03.05.2010
From: Jill

Subject: Re: enbrel

Hi Jeanie,i began MTX 4 3yrs ago, and enbrel works good for me, but takes time to kick in, been on enbrel over a year now, so takes time,..have to say, I thort MTX N Enbrel was the last resort, and wld totally make me back to the way i once was.....but had a huge shock, it just dampens down the prob, does not completely take away the pain, or for me, personally, degenration is dreadful.....BUT id rather be on it than not, been off it nearly 4 weeks now, as had gb op, off it two weeks b4 and 2 weeks after op, so back on it tonight.....does make me unwell at times, but on the whole, its so much beter now side affects wise......please hang on in there ok.....it does take months to kick in,n longer , taken me long time to get to this stage, but that is a personal experience of mine, we r all different,so dont worry, but i think u do need to really try and stay positive, that helps, be positive that it will work for u, its an amazing combined therapy, given time, ther eis hope, know lots on hre on enbrel and its worked good for them, as it has me also, but ive excepted that its not a total cure. coz ther eisnt one, it just ges easier, and dampens down the symptoms.....let us know how u get on, tk Jill
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Date: 03.05.2010
From: jill

Subject: Re: enbrel

excuse the spwlling errors, typing in the dark here lolol
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Date: 04.05.2010
From: Jeanie

Subject: Re: enbrel

Hi Jill and thanks :)

I will keep trying with the Enbrel- probably me just expecting miracles and not giving it a chance. See my RA nurse on wednesday she`ll encourage me to stay with it.

Do you have RA ?
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Date: 04.05.2010
From: jill

Subject: Re: enbrel

hi jeanie, have what sally has, seron negative inflam artha, same as r.a. also have DDD, and tendon diseae....plus Reiters diseae, which gave me this in the first place .....keep with it Jeanie, it will get u thru your worse days eventually....most say it works, beren in here nearly 2 years, and havnt heard a bad word about enbrel and it not working.....tc Jill x
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Date: 05.05.2010
From: Jeanie

Subject: Re: enbrel

Gosh Jill and I thought I had problems !!

Saw RA nurse today, she says we have to allow 6 months to see if it works and gave me a steroid injection to try and ease the next month or so :)
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Date: 05.05.2010
From: jill

Subject: Re: enbrel

HI jeanie, some say 3 months, but i think air on the side of caution n have 6 months in your mind, that weay u cant get upset, remember the prob is long term, and we have to take the meds often long term, so of course u want to stop damage happening, at leat ya back on it, and dampening down the problem, but to get the beswt advantage of that med, i reckon MTX and Enbrel 6 months too.....tc Jill x
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