Arthritis Forum
Home.

News.

Personal Stories. Links. Message Board.  
Arthritis Forum  
Add your comments to this topic Start a new topic
Date: 07.02.2010
From: William Kates

Subject: Anti-TNF

I suffer from inflamatory arthritis and have done for the last three years - and it has steadily got worse. I have just had my fourth infusion of Infliximab and am not having too much luck!

I would just be keen to hear about any of your experiences with anti-TNF drugs and what has / hasn't worked for you.
reply | back to forum

Date: 07.02.2010
From: valh

Subject: Re: Anti-TNF

hi only just starting with this tabs am on r controling this for me so far but will follow replies you get with interest. how does it affect you and how fast did it detiriate(sorry about spelling) just wondering as for warned is for armed as they say
reply | back to forum

Date: 08.02.2010
From: julie

Subject: Re: Anti-TNF

I've been having Anti-Tnf treatment for well over a year,i started on Etanercept which i tried for a few months it didn't work also i had an allergic reation to it. Then i tried adalumumab same thing happened as before, now i am having rituximab by infusion which is better i'm not flaring up aggressivly all the time when doing nothing and my jaw dosen't flare up as much. Good luck with yours it can take months to work.
reply | back to forum

Date: 08.02.2010
From: J

Subject: Re: Anti-TNF

Hi Julie, thanks for sharing your info with us all, often the meds dont work for us, but the key is to tell the consultants and try other meds,know the infusions mean u go into hospital,but its a small price to pay if the infusion one works for u , tc Jill
reply | back to forum

Date: 10.02.2010
From: julie

Subject: Re: Anti-TNF

My mum told me a friend of hers has a daughter in her late 30s with r/a not been diagnosed long and has gone straight onto Anti-Tnf and its started working straight away.My r/a nurse said they are starting to put people on them earlier now. I am been taken of mine as its not working well enough hopefuly i will be going on another one if they can get funding for it.
reply | back to forum

Date: 11.02.2010
From: J

Subject: Re: Anti-TNF

Hi Julie, well thats goood news, how long were u on yours? been on my Enbrel over a year now, deffo made a difference to me, less flare ups, know we r all different and I hope they get u correct one very soon tc Jill
reply | back to forum

Date: 11.02.2010
From: Jill

Subject: Re: Anti-TNF

Hi William, sorry to hear that, and welcome to our brill Forum....ive got Inflam artha too...nightmare,,,,hope they get u sorted out very soon, I was told by my Bio nurse, that as all ppl are diff they get given either infusions or Anti TNFS, confuses me to be honest, but If I was U William, and U truly feel that its not working for u, I wld press them to try u on Ant TNF, I use Enbrel.....much improved.... I know some of us are all at different stages of arthritis, some not so bad, they r the lucky ones I guess, but I defffo felt improvement after 3 months op so.....will they let U go on it? no side affects from it either, have bloods done monthly, and well looked after.....tc let us know what u decide.....Jill
reply | back to forum

Date: 11.02.2010
From: julie

Subject: Re: Anti-TNF

I was on them for about 9 months i suffer from allergies and i seem to react badly to all of them, you could say i'm an awkward bugger...Just read side affects to this new one and it says it can affect your cholesterol
reply | back to forum

Date: 12.02.2010
From: Jill

Subject: Re: Anti-TNF

I was upset other day Julie, had regular bloods done monthly, and was told my cholestrol was 5.4(not high enuff to do anything yet eas told) but only 2 years ago, was told My cholestrol was text book 4.0, so really Upset....the funny thing is tho, thought we had to 'Fast' for that type test, and i didnt.....I do not eat fattty things, allergic to Dairy produce, dont eat choclate, cant understand this....anyone Help?
reply | back to forum

Date: 12.02.2010
From: Bill

Subject: Re: Anti-TNF

Hi Jill, Many thanks for your comments and advice.I had to miss my appointment with the nurse on Tuesday because I have caught the sickness bug which is going around our area at the moment. Feeling really fed up but the my GP has been very supportive. I will let you know how i get on after my next appointment, Bill
reply | back to forum

Date: 12.02.2010
From: KayJay

Subject: Re: Anti-TNF

Hi Jill. I don't think you have to fast for cholestrol but you do for a diabetes test. My chol is up at 5.1 and I've been taking statins for a few years now. However they don't like diabetics to go above 4 [ I think because it increases the chance of heart probs and stroke ] so I'm going to either increase the statins or stop eating fats. Which I don't do a lot of anyway, and you have to have "good " fats to keep healthy !! all very confusing !! . I have put weight on because of arther pain so it's a vicious circle. I would think that your chol at 5.4 is not alarmingly high - just keep a check on it with blood tests. BTW I have unsweetened Soya milk in my tea to try to bring the chol down.
reply | back to forum

Date: 12.02.2010
From: Jill

Subject: Re: Anti-TNF

Hi kayjay, will ask my Bio nurse when nxt seee her, cant understand Y it has raised, becos I hate greasy, buttery, milky dairy produce!...know its not alarmingly high, but I guess I thought to myself, here we blidddy go again, another part of my body failing me!!! makes me MADDDDDDDDDDDDDD!!!!!!.....lol feeel better now
reply | back to forum

Date: 12.02.2010
From: Lynn B

Subject: Re: Anti-TNF

Hi jill doctors like your cholestrol to be below 5 if possible. you dont just get high colesterol with dairy products, there are other foods that can raise it also alcohol, smoking, You should be able to get a booklet from your doctors surgery, telling you wot foods cause high colesterol. only now because i had a Heart Attack in 2005,i had blocked arteries, have had a stent fitted and have to watch my colesterol. Cardiologist recons i should 3, And you do have to fast for 14hrs for a colesterol test. hope this helps.take care. xx
reply | back to forum

Date: 13.02.2010
From: Jill

Subject: Re: Anti-TNF

Hi ya Lynn...blimey that must have been scary....bless u, u ok now? ya only young arnt u? yes I do smoke, but only do approx low as none aday(lol) to 5 a day, mb 3, no more than that, so daft really......re the test, they didnt ask me to fast....so I reckon that is y it was raised, but it did bother me, becos as I said, I cant see Y it was raised.... when u fast, they get the true reading right? but if they test us without fasting, could that also be a more true cholestrol view of what is really going on there? hope u get what I mean Lol.....stay well Lynn, hows the Joints etc? being nice to u? or being 'Orrible tc Jill x
reply | back to forum

Date: 13.02.2010
From: Lynn B

Subject: Re: Anti-TNF

Hi jill i was 49 wen i had the heart atack i am now 53, and will be 54 this year. yes it scared the life out of me, but it didnt stop me from smoking until last year, it was realy hard to give them up.I still crave for one sometimes. The true reading for a colesterol test is to fast, for 14hrs. But dont go worrying your GP is happy with a 5.As for my joints there stiff but the pains not to bad the steroid injection hasnt worn of yet (touch wood).Anyway i am sorry to hear about the problems the car accident has left you with... hope you get them sorted soon and take care Lynn.
reply | back to forum

Date: 13.02.2010
From: KayJay

Subject: Re: Anti-TNF

Lynn when did you have the Steroid injection ? I had mine beginning January and it's just starting to wear off DOH !! so getting the usual stiff and painful back - hips etc.

Smoking - Hmmm I've got to own up to having that particular vice. I don't drink or go out anymore so it's my only "pleasure" now. Sad ???

Well done though for you giving up the evil weed :0)
reply | back to forum

Date: 13.02.2010
From: Lynn B

Subject: Re: Anti-TNF

Kayjay hi I had my injection on the 19th January, I think mine is slowly coming back, and as for smoking ooooooh i do miss my fags. I do still have a glass or 2 or 3.hope your not in to much pain??. take care xx.
reply | back to forum

Date: 13.02.2010
From: KayJay

Subject: Re: Anti-TNF

Not too much Lynn - have had worse. I'm not keen on the return of the sausage fingers though, it was lovely to have " normal " fingers if only for a few weeks. Don't know if I'll be able to have the injection again becos it shot my blood sugar reading sky high [ I'm Diabetic ]. Worse was the Rhumie DR didn't even warn me of this.

Anyway I'll leave you to your tipple while I go out for a cup 'o tea and fag !! Take care xx
reply | back to forum

Date: 13.02.2010
From: Lynn B

Subject: Re: Anti-TNF

Ooooooh have one for me too, did you know that the injections stain your skin, thats why they give it to you in the backside, and they give you insomnia.. as if we needed anything else to stop us sleeping,Iam sorry about your blood sugar,wot helps one thing makes something else worse! Take care xx
reply | back to forum

Date: 13.02.2010
From: KayJay

Subject: Re: Anti-TNF

Yes Lynn I've had them in my ankle as well and now I've got a permanent bruise mark there. I think we can safely say that we all don't sleep that well anyway !!

Will have 1 for you if you have 1 for me ;0)
reply | back to forum

Date: 13.02.2010
From: Lynn B

Subject: Re: Anti-TNF

YOU BET I WILL.... tc xx
reply | back to forum

Date: 13.02.2010
From: julie

Subject: Re: Anti-TNF

I had my steroid injection on Tuesday and still waiting for it to take effect.
reply | back to forum

Date: 14.02.2010
From: Lynn B

Subject: Re: Anti-TNF

Hi julie my steroid injection took 7 days to start working, so dont worry it should kick in soon. everone is different.. for some people it only takes a day or two, for others a bit longer, hope it starts working soon. take care. xx
reply | back to forum

Date: 14.02.2010
From: J

Subject: Re: Anti-TNF

Hi gang, thing is the steroid injection will wear off eventualy, it isnt long terrm, far from it,also becos they dont want us being on steroids at all really, too many can casue other problems, like damage to the bones, well thats what i was tild anyway, but the injections are bound to wear off, same if u have been given a dose of tablets, they will only give u say a wek, mb two weeeks worth, and then we come offf them, so like the injection, eventually wears off, if it didnt, would mean out bodies is constantly On the steroids.....Jill
reply | back to forum

Date: 15.02.2010
From: julie

Subject: Re: Anti-TNF

Thanks Lynn i am going to see my gp this week to see if i can change my painkillers.
reply | back to forum

 

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

Your name:
email:

5+1=
(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