Arthritis Forum
Home.

News.

Personal Stories. Links. Message Board.  
Arthritis Forum  
Add your comments to this topic Start a new topic
Date: 07.12.2009
From: Verity

Subject: Anti TNF

Hi everyone,
Ive only come across this site today and already have found loads of people in the same boat as me. Im 24 and have had arthritis since I was 6. Initially it was juvenile Arthritis and now its RA. Ive had loads of drugs that havent agreed with me eg. Sulphazalazine. Im currently on 25mg of Methatrexate and am finding it less helpful than it was to begin with.
The consultant is in the process or doing my DAZ/DAS score to see if Im eligible for Anti TNF treatment. Does anyone out there have Anti TNF? And if so, what do you make of it? Good/bad?
Im just very aware there is no long term knowledge with it.
reply | back to forum

Date: 07.12.2009
From: Denny

Subject: Re: Anti TNF

Hi Verity, I have been on humira (Adalimumab) since July and have found its helping quite a bit and it has calmed the pain down to a more tolerable level, I am using the self administered pens which I have found quite easy to use with no side effects to date so I am quite pleased with the results so far, the majority of users do experiance good results, so I hope you qualify and find it helps you too.
reply | back to forum

Date: 16.12.2009
From: Julie

Subject: Re: Anti TNF

Hi verity I've ben on enbrel injections 50mg once a week for over five years now and it's the best thing I've ever been on. I like yourself have been on most of the drugs you have listed but their theraputic effects did not last foe me.
Don't get me wrong it is not a cureall but it works well with me. My flareups are light in comparison to what they used to be like. It does not stop all the pain but it significantly reduces it for me. There are three main types of TNF's so ask your specialist about them so you can choose the one best suited to your condition. Good Luck
reply | back to forum

Date: 17.12.2009
From: jill

Subject: Re: Anti TNF

Hi Verity, I totally agree with Denny and Julie, cant really add to that, mind you, b4 I began the Enbrel, ive gotta say, I truly thought it was going to be my Miracle cure!!After all, it is a big decision to begin those meds, I thought that Methtrexate was also going to be a miracle, found out it wasnt, but new about Enbrel and last resort etc, but ive come down to earth and like Jule said, it does dampen down the affects of this nasty disease signifiantly, less flare up,...so goood luck and stay positive.

Jill x
reply | back to forum

Date: 17.12.2009
From: Verity

Subject: Re: Anti TNF

Ive kinda goven up on the idea of a miracle cure now. There was a time..... lol
It all just takes so flamin long! First to decide, then to kick in after youve taken it, then to get to the correct dose. Its really frustrating! Every now and again I also get a pang of guilt that im putting all these toxic chemicals into my body but hey, none of us really have any another options do we! I suppose its a choice of being in a wheelchair by the time Im thirty or becoming some sort of radio active glowing toxic mass lol.
............Toxic mass it is then!
reply | back to forum

Date: 22.12.2009
From: Helena

Subject: Re: Anti TNF

No way on to TNF and good luck to those who are on it... I was told by my hospital that its only 80% effective and strangley has killed people in the US...

Has anyone tried changing their diet and stress levels? I was on 500 tabs a month when I was 18. I'm 49 and have spent 26 years eating whole natural foods (no manufactured rubbish and additives) and have only taken 28 tabs a month in all those years .... better than TNF.. no more DMARDS or NSAIDs. The diet has dampened the pain and I 'bounce' out of bed every day when 30 years ago it took me five hours to flex each painful joint and get up... in the long term this has obviously kept my other joints healthy ...

Anyone else had this?
reply | back to forum

Date: 23.12.2009
From: Jill

Subject: Re: Anti TNF

Helena, Im truly pleased that u arnt suffering like u use to...thats fab news, said with sincerity x...I began having probs after first baby in 86, was 26 then, was told then that it was NON Progressive artha....struggled thru the years like ya do....Must admit, being occupied with more babies, didnt even occur to me that diet wld be associated with the type they diagnosed me with, always had a good diet tho, plent veg and fresh fruit, meat etc...never drank back then.....anyway, wasnt until 2002 that I got rushed into hospital with acute pain everywhere, not just joints but thru the tendons and ligaments, they said I was Misdiagnosed back in 86, that I had Reiters syndrome(defective Gene HLA B27 Pos) has now left me with chronic Inflamatory artha! If I had been given correct meds way back, I might not be as physically damagaged as I am now...... However, the Reiters constantly attacks my soft tissues, and the TNFS do NOT help that side of my disease, only the degeneration of the bone........ I still eat very good, Not Organic, but since 2002, seems like ive had a constant flare up of this nasty inflam artha..... been told my condition isnt straight forward like just arthritis, only 3 discs in my neck, three discs in my lumber region have gone, hence the prior spine op, but another has gone and need fusion.....that is the only reason I now take Enbrel to stop the Bone degeneration that will get worse without the Enbrel....as I battle with one other disease, Im also battling with Inflam artha....I was so scared to begin all thses meds, did not take the decision lightly at all, I thought that Methtrexate wld be My little Wonder Drug, and stop all pain etc...i was sadly mistaken, got worse and had No choice but brgin Enbrel.......as I said in my other posting, wont repeat all that to u again, but some of us, simply dont have the choice......maybe U were going to go into remission anyway, without offending u, mb U have been one of the Luckier ones(notice I said Luckier ones) becos Im not belittling what U have had to endure at all.... obviously U suffered bad, However, if U truly did, U wld understand that lots of us have No choice, and dont have the time to see if the Foods we eat may work, that can take years b4 any results show we get better.

Acute/chronic pain, sleep depravity,pain 24/7, corrective surgeries, depression,no social life, sucidal thoughts, the burden on ourfamilies, the Guilt and failure I felt was unbeleiveable, to the point where I contemplated suicide, for the better of my family!!..... so althought I appreciate your comments about the Meds, becasue after all, this is an informative forum, advise etc, and all of us take on board peoples personal experiences....... However, I can only truly go by how this disease had affected my life, and taking the Toxic killing meds as u say, for me was last resort, It gave me Hope, Hope....and i only have a young family (5 kids) youngest ten, all hes known is me being ill and in pain, surgery after surgery......Im a strong person mentally, and I use to be physically, did gym, swim, weight trained, I had an athletic body, very defined, and at 5ft9, people comlimented me how athletic and healthy I looked.... ive Lost all of that......in 7 short Years(felt like a lifetime tho). what wld be good is altho U have given good advice, some of it will Scare some of the ones about to begin these meds.....and some may decide to NOt take the meds, on what u have posted!....this truly isnt an insult to your info u gave, but please also understand in depth, how most of us, if not all will feel after your post..... No one, not even my bio nurse has ever told me that these meds can Kill, literally Kill us, of course I know they r toxic, thats y we have Blood tests done every 4 weeks, if there is the slightest prob on the tests, we get taken off them Immed........I will be truly honest, others in here will understand what I mean, becos they know me, and my ways on this forum.....I do my Utmost to support others, even when im in pain, and can barely type, but i couldnt ever post what U posted becos I couldnt Instill in the people that visit this forum fear!....I wld suggest , like U did say, look into it properly...... I feel I did, I asked so many questions to my Top Rhumy who is very revered in his work, i asked about ALL side affects....he knows I have a young family,he Never once told me that it cld Kill me....! its no skin offff his nose whether I take the meds or not, so if he knew that taking my Meds wld Kill me, I know he wldnt want me to have them! and if its tru, and your consultants know this, then surely my Rhummy wld too!....... anyway, pls do not take offence at this posting to u, not intended, in a nut shell, m y point is, mb say what U heard, which u did of course, but follow it thru with a fab Positivity bit at the end of that pariticular post....... I also have to say, in a year that ive been on here, that is the first time ive ever heard that those meds directly Kill people, and Hospices have people like ourselves in the hospice with related meds, and that they r dying directly becos of arthritis and the DMARDS and Tnfs and the like.......anyway, Im NOT saying u r wrong waht U posted, all im saying is, for recent diagnosed people that havnt Yet lived thru the pain like u did/are for years, they need support and positivity, yes we give out advise and suppoort people that worry, primarily that is what I try and do, but I couldnt say what U said, I mite enquire thru a new topic about that...... anyway, im rambling on here......I Prefer to give Hope, Help, Support, Hugs, good advicem and more importantly, to help them thru their pain at this time...... there must be a hundred people over the year that have been on Enbrel amd NTX, not one consultant told them what U were told....has it occured to u, tht your consultants might have been lying to u?? just a thought......happy crimbo to You and Welcome to the forum also

regards Jill
reply | back to forum

Date: 23.12.2009
From: Liz

Subject: Re: Anti TNF

Hi Verity

After everything I have read, weighing up pros / cons of it all for my personal circumstances - as we are all different - I agreed yesterday to start anti-tnf as I qualified and they are in the process of starting me on Enbrel as well as staying on Methotrexate, Sulfazalines(sp?), Steroids, Diclofenic, Folic Acid and a gaestro resistant drug. So Ill keep you posted but was told i can't start for another 8-10 weeks. Plus I have now got to be tested and treated for what they think is H-Pyroli(sp) as the combination of drugs affected my digestion which is why methotrexate not working as well as should x
reply | back to forum

Date: 23.12.2009
From: Verity

Subject: Re: Anti TNF

Hi Liz I posted to you on the other TNF link so wont write it all again! Just had a little look at H.Pylori on google and it looks very painful. I hope you and your consultant can find a way to deal with it. x

Jill, I have to agree with everything youve said. We need to stay as positive as possible because the negative is a very dark place. Ive been through/am going through the guilt, depression and feeling of failure and its a really viscious place to be in your head. Positivity is definately one of the most important things to have.
reply | back to forum

Date: 24.12.2009
From: Lucy29

Subject: Re: Anti TNF

Hi

I'm just wondering why they have never offered me TNF drugs as I have just been reading up on them and they seem to offer good effects. I have suffered with this disease now for 27 years and as they are now on about hip replacements why wouldnt they try me on the TNF drugs?

i am going to be asking my rheumy when I see her next in Feb as the other drugs I have been trying recently have been doing naff all!!!!
reply | back to forum

Date: 24.12.2009
From: Verity

Subject: Re: Anti TNF

They tend to offer them when all else fails. Does the Methatrexate work for you? What othermeds are you on?
reply | back to forum

Date: 29.12.2009
From: lucy29

Subject: Re: Anti TNF

Hi Verity,

Ive tried all sorts so far....steroids oral as well as injections in the joints all kinds of anti inflamatory and am on Indometacin at the min I think thats how you spell it. I'm on mthx but I havnt noticed a difference and have been taking it for almost 18 months now....really want to come off it but as my condition is active at the moment they my consultant says I should stay on it.

I'm going to mention the Anti TNF treatment when i'm back in Feb as they also injected synvis into both hips two months agao and that did nothing. I'm also now having to decide about hip replacements and I really dont want to go ahead with those but at my age I want to try and have less pain so I can enoy my time with mys son when hes growing up.

Lucy x
reply | back to forum

Date: 30.12.2009
From: Verity

Subject: Re: Anti TNF

Hi Lucy,
Im currently thinking about having my right hip replaced. Ive been thinking that Id rather have painfree time now and accept that it would have to be replaced in the future rather than holding out and being miserable. Surely being young youd be better with the stress of the op etc. The more I think about it and hear others success with it the more Im thinking positively about it. We need to make the most of our young years as its only gonna get worse I guess. You know what I mean? Im 24 by the way : )
reply | back to forum

Date: 31.12.2009
From: jill

Subject: Re: Anti TNF

this diseae is like Premature ageing....like being 95, when im er in my 40s....lol....mind u had this crap disease since 25ish. back probs began when just 15......so im ANGRY now....cos soon i will be frigging 95!!! my life is running away with me... and regards to sex drive gals.... think we all feel same, its the pain thats y, mixed up with tiredness/fatigue....im on Enbrel and this year im worse!!! cant understand it all.....
reply | back to forum

Date: 31.12.2009
From: Verity

Subject: Re: Anti TNF

I think sometimes the anger and frustration can be worse than the actual pain. Im hearing ya Jill! Try not to understand. It will NEVER make sense! x
reply | back to forum

 

Add your comments to this topic
Subject:
Please type your comment here:

Your name:
email:

3+10=
(This sum is to help prevent automatic spamming through this page - thank-you)


top

Site design: T - Creative Home | News | Personal Stories | Links | Message Board