Anti tnf

[pat66]

Been tested for compatibility with tnf treatment,a little worried about the side effects.

Does anyone have a similar treatment that doesn't cause cancer/heart failure?!?!

Open to the ideas of traditional medical practice or Chinese medicine.

[Barrister]

I have been on anti TNF (Humira - Adalimumab) since last October. I've had very few side effects and it seems to be working well. Clemmie

[pat66 in reply to Barrister]

Thanks for replying,may I ask do you still get swellings?

[Barrister in reply to pat66]

I have a little swelling around the back and side of my ankles but I never really got much swelling before. Just terrible pain and stiffness. I forgot for a while how bad it was until I got too clever and wasn't taking the Humira as regularly as I should, but was soon reminded and started taking it properly again. Clemmie

[pat66 in reply to Barrister]

My swelling is constant( I literally mean constant) my knee has been twice the size every day for the last at least a year.

But it I am very hesitant to have this humira just hoping there was something else I could try

[Hidden in reply to pat66]

I tried 3 DMARDs which helped in some ways, but my knees remained swollen for those 2 & a half years in addition to the year or so before diagnosis. Humira worked like magic on swelling.

[pat66 in reply to Hidden]

Thanks for your reply it's nice to have something other than a doctor throwing stats at you.

As a younger person I want my life and movement back for my family and I but am concerned about the side effects

[Hidden in reply to pat66]

Trouble is, inflammatory arthritis has 'side effects' especially if untreated. If it were just about joints that would be bad enough. But I suppose if that were so it would be possible to guesstimate the type of risks involved in going without drugs.

But it is so not just about joints. Rampant systemic inflammation can do a lot of damage and where / how varies from person to person.

We all want our lives back whatever our age. I think you're doing the right thing by posting and weighing up your options, it's not easy. But please, fear the disease rather more than the drugs, that's my advice anyway.

[Barrister in reply to pat66]

I was very hesitant to try any of the medication offered because I am usually so sensitive to drugs and they make. me so ill. I kept trying to put it off but have spent so much of my life in pain and finally the rheumatologist said just get on with it and try it so I did. And it had worked. Clemmie

[pat66 in reply to Barrister]

I am in my mid thirtys and VERY aware of other people seeing me hobbling along with my stick ,and thinking"oh he must be trying it on" but I am hoping that I can find something else that is not so SCARY

[Robin_Hood]

Hi, I'm 31 and have been on Simponi for 6 months now, would not look back, still have good and bad days and am still having to take the DMARD's but it really takes the swelling away from my wrists and hands and makes them at least useable again.

After the first injection, felt like I could run a marathon, no swelling or fatigue, it slowly wears off towards the end of the month and things start to swell again but at least I feel like I can do stuff with my 2 & 4 yr old boys like a 'normal' Dad for the majority of time.

[Debbiegod1]

I've been on it 8 months for ankolysing spondylitis , it as given me my life back,I think if you read all the side effects to every drug you wouldn't take anything,it depends on each individual but I'm willing to take the chance and have my life back,also I work in a hospital with poorly children and apart from the odd cold I'm fine .

[helixhelix]

Read the patient leaflet for aspirin - that's scary too! All drugs, even herbal supplements, have potential side effects that can be quite serious so you have to weigh up what's most important to you. For me it was getting my life back, and the drugs have done that. I do everything I can to make sure I take the smallest amount and give myself the best chance of avoiding side effects. So I eat very well, exercise regularly, don't smoke or drink more than the occasional glass. I don't take Humira, but the ones I take also have potential scary side effects and I've been totally fine.

Humira costs the NHS about £10,000 a year so if there was something else that worked then that would be given instead.

[burtonbradstock]

Hello I had a terrible reaction to humira and embrel with swelling and red rashes in rings around my legs and the injection site. also increased blood pressure and headaches so treatment was stopped on a plus side it deals with inflammation very quickly but but worth the side effects. I'm on rituximab infusions now still have terrible side effects ! Been on methotrexate since 2002. Running out of options now. I feel lucky that for a long time my RA has been controlled and I have been able to live a good life. Look after yourself and I hope it works for you. Stay Positve

[pat66]

Thankyou everyone as I said previously it is brilliant to speak to other people in the same boat.Your comments are very helpful,I guess I have just have to do some serious conversations with my wife . I hope you guys have a "good" day ( you know what I mean).

[PJsorefeet]

I'm 32 and I've been on Enbrel for nearly 2 years, it really head transformed my life. My fatigue is markedly better and I'm finally able to play with my little kiddies like I want to.

I too was worried about the side effect profile, but I think in the end you have to decide how much impact your symptoms have on you. Risk perception is always a funny thing, it's actually risky to life getting in the car to drive and pick up your prescription than actually taking it but we don't give that a second thought.

I know being younger and considering long term meds is tricky but after NY best friend died from a brain haemorrhage that came from no where, she had a healthy lifestyle, didn't smoke, didn't drink etc, it made me try and view life differently and enjoy what you have. If taking meds means I can enjoy life and enjoy my family that s what I decided to do, and for me it was the best decision I could have made.

Hope you feel better soon x

[Scottishlad]

Been on Cimzia for over 2 years. No problems and it has improved my condition no end.

The law requires every possible recorded side effect to be mentioned on information sheets. Often there is no scientific proof that treatment caused the symptoms.

There is as far as I know no evidence of effectiveness of any alternative medicine treatments for RA.

The longer you go without effective treatment the more permanent damage will be done to your joints.

Hope this helps

Cecil

[50something]

Morning! I've been on Enbrel for 8 years with no side effects at all. It's truly given me my life back! I average less than one flare per year. My advice? Go for it! Good luck! Teresa

[Pands]

I have been on Humira for 8 years and it has made a a massive difference to my RA. The only side effect was injection site swelling (bit like the swelling of a bee sting) for the first few months that gradually decreased to nothing at all. However what Humira doesn't help is the existing erosions, damage, joint deformity and associated pain I have from not being well managed medically. I am 44 now.

The longer your RA is not well managed the greater your chance of irreversible joint damage. If you are being assessed for biologics then It is likely you need it. Best wishes whatever you decide.

[scotslass333]

Hi - I've just started Humira, had my first injection 10 days ago. Like you, I get bad side effects from almost every drug, and even when I "stuck it out" with Methotrexate injections for the required 3 months, was getting no benefit from it. Two years on from my first symptoms, I'm no better. Was very unsure about trying a Biologic - altho grateful to have the chance - but eventually agreed to give Humira a go. I must admit from reading other people's experiences with it, that I was hoping that half an hour after doing the first injection, I'd be running round the town - alas, no! Instead I had a fair bit of nausea, but very little redness/swelling on site of injection, which they say is the most common reaction. l also found myself bursting into tears a lot for the first few days, but whether that's a true "drug reaction", or just an extra dollop of depression from the illness itself, combined with my less than ideal circumstances (I'm over 60 and live alone) - who knows? I suppose time will tell. The second injection is due this week, so fingers crossed that the pain/inflammation/swelling might actually start to improve after this.

I would say that once you've taken the advice of your consultant/rheumy team, and your family, maybe you should give Humira a go. If you need it, you need it. And as all these other folk are saying, even paracetamol has side effects. And maybe YOU will be running round the town after your first injection!! Hope so. Sheena

[pat66 in reply to scotslass333]

Fingers crossed for you hope you're not too alone as I know how hard ra is on mind as well as body

[Hidden]

Look into this i am doing it but along side all the drugs.

thepaleomom.com/the-paleo-a...