Benapili

[lesley57]

I have been on Benapili 8 weeks now, my last blood test showed no inflammation and rheumy nurse said it was working well, my question is why am i still in a lot of pain and my hands and feet are swollen up every morning also very stiff after sitting even for short periods, and the palms of my hands are red and burning.

[popsmith1874]

Lesley do you mind if I ask if your sero negative as i am and if so your bloods will probably show normal as mine do and I've exact same problems and have been on Benepali for nearly a year now and I'm also on Methetrexate 20mgs and sulfazalasine 500 mgs which I've been on for over a month now and my hands and feet are no different to what they were when I contracted RA 3 years ago

[lesley57 in reply to popsmith1874]

Yes i am, but they are going by esr levels which have shown high inflammation, just the thought of putting all these nasty chemicals in my body and no relief was disheartning.

[popsmith1874 in reply to lesley57]

Yes my esr levels are always in range with inflammation but the only time they go wonky is if I have an infection, but my last DAS 28 score was in the 5 or 6 range that's why they started me on Benepali and when I went to the specialist nurse last month she added Sulfazalasine to see if that works, but it hasn't so far so I'm phoning the helpline today to see if I can get an appointment to get my meds changed, if you have a helpline I would phone and see if you can get to see someone, hope you get sorted out xxx

[lesley57 in reply to popsmith1874]

Thankyou, will call them x😊

[AgedCrone in reply to lesley57]

I know 8 weeks must see forever when you are in such pain - but Hang on in there !! RA can take time to control........

Stop thinking "nasty chemicals" ......think "no more pain or joint damage".If you have RA it needs to be controlled - you will read on here how people who resisted Dmards ( those nasty chemicals) on diagnosis now regret that as they have irreversible joint damage which is causing them major problems.

Talk to your rheumy nurse about getting some extra pain relief until the Benipali kicks in....& if it doesn't your rheumy will offer you a change of drug.

Hope you are more comfortable soon.

[Nsmith13]

I was on it 3 mths bloods were ok a couple of times and then it went higher I've stopped it now like you still had lots of pain and fatigue my consultant has offered me rituximab when I get rid of infection caused by meds

[oldtimer]

blood tests don't always show the inflammation that is causing the pain. It seems to vary from person to person what is 'normal' for them. I find it difficult because it always seems as if the health professionals are going to disbelieve me when I say 'But I'm still hurting'.

You live with your body every day - they only see you occasionally, so keep your own good records of what is happening and present it to them.

[lesley57 in reply to oldtimer]

Thankyou, yes im keeping a diary x😊

[LesBev]

Just a thought, I was told if you are sero negative then Rituximab is not the best drug to try. I was led to believe it doesn’t work so well in these cases. Worth checking?

Warmest wishes

Another Lesley!