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Date: 18.04.2011
From: cookie

Subject: anti tnfs the reality?

Hiya folks am going for mt second assesment next week and will hopfully be starting these soon have been off work for nearly 6 months with a flare up
. I am wondering what the reality is of being on these i.e what symptoms people have how things have changed for them etc are you still taking other meds alongside them? Many thanks xx
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Date: 18.04.2011
From: louloubelle

Subject: Re: anti tnfs the reality?

Hey Cookie

For me, anti-tnf is a wonder drug. My condition improved almost straight away and I was virtually pain free within 3 months. In fact, I started in the May and by October I was hiking around the valley of the kings and the temples of Luxor, Egypt as though I was any other tourist!

I was expecting to be ill a lot as it suppresses your immune system but I was rarely ever ill - I suppose if yuor immune system is too active then it is only being supressed to a normal level.

I had no injection site infections at all.

However, since my breast cancer diagnosis I have not been able to take the anti-tnf. This is because there is very little research into the effect that the drug has on the chances of the cancer returning. The information that has been released though suggests that anti-tnf can actuallu reduce the chance of getting cancer (with the exception of a certain type of skin cancer where the risk is increased). This info was from a relatively small study though and I don't think they will no for at least another 20 or 30 years.

Hope this helps

Lou x
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Date: 19.04.2011
From: cookie

Subject: Re: anti tnfs the reality?

Oh thanks lou hope your feeling well honey xxx
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Date: 19.04.2011
From: cookie

Subject: Re: anti tnfs the reality?

Lou do you mind me asking which one you took? Ta hon
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Date: 20.04.2011
From: louloubelle

Subject: Re: anti tnfs the reality?

Hey Cookie

I'm really well ta - don't know if you know but I've been given the all clear re breast cancer!!! I was on etanercept (enbrel) which I self-injected twice weekly. Honestly, it changed my life and I am totally gutted they won't let me go back on it. I've been on Leflunomide for about 7 weeks now and haven't noticed any improvement - fingers crossed it works 'cos it's probably my last option :-(

Hope you're well.

Lou x
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Date: 20.04.2011
From: bsk

Subject: Re: anti tnfs the reality?

hi Cookie, I am taking Cimzia. Not working fully yet but I can feel a difference. Still on prednisilone but hope to come off that. Only side effect is vulnerability to infections. Had a nasty throat one and had to come off my drug for a month as my neutrophils were very low but they recovered.
Hope this helps.
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Date: 20.04.2011
From: cookie

Subject: Re: anti tnfs the reality?

Thanks bsk. Lou hope they work for you let us know how you get on xx
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Date: 23.04.2011
From: kazzie

Subject: Re: anti tnfs the reality?

hi i am on enbrel and yes it worked but am on mxt injections as well ,i feel better as couldnt even walk or move before but still have flare up .but i def see a improvment hope that helps .
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Date: 23.04.2011
From: cookie

Subject: Re: anti tnfs the reality?

Thanks kazzie x
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