To all my NRAS friends I would like to wish you all a Merry Christmas & a Pain free New year x
I was wondering if you all could give me advice & if you have been in the same postion as me.
I've had RA for 3 years & now under a wonderful Rheumatology team the trouble I am having is I've tried Enbrel got a bad reaction had to come off it & since Sep I've been on Cimzia but I keep on getting Very bad Flu-Like symptoms so they stopped that what is the next step another Ant Biologic ? I am on Methotrexate 25mg & Hydroxychloroquine 200mg but I am getting serve pain had both Thumbs fused Left Knee fused & left wrist being Fused on the 2nd of Jan 014.
I be ever so grateful with any help going crazy with the pain.
Thanks
Graham merry xmas xxx

Hi Graham

Sorry to hear you are not having much luck with the drugs. Have you got an appointment with your specialist soon? It sounds like you will be offered Rituximab if you have failed two anti-tnf drugs. You can read all about it on the link below

Rituximab

I hope the fusion in the wrist goes ok. Just out of interest, were you offered a knee replacement instead of fusing the knee?

Hope you can have an enjoyable Xmas and all the best for 2014.

Best wishes
Rebecca

Thank you all for your replys, I am due to see my brilliant rheumatologist next month, I am having surgery on the 2nd so can't go on Anti Biologic drug due to having surgery, rheumatology nurse said I will be put on another just wondering what it will be hopefully its a infusion I think that will suit me better.
The reason why I had my knee fused Rebecca my knee was so bad had a number of operation but in the end the knee wouldn't bend they offered me above me knee ambutation but I decided to have my fused I've got used to it now!!.
Thanks once again
Graham

Hi Graham,

By your own words you have in a previous posting said you have a brilliant consultant - so why would he want to give up on you?

They're not in the business of giving up on patients. You've been unlucky. Like you, I and many others have tried various
forms of treatment that hasn't suited us. I always find it very unhelpful when a clinician (the nurse) compares me with 'other patients'
and their responses. It immediately puts us in a no win situation which is not of our making. You are a individual with your own individual
responses to all things. The drugs we are all taking are extremely toxic, your average man in the street wouldn't be happy to take them,
we unfortunately do not have the luxury of saying no thanks!

You need to have the faith to continue believing in your 'brilliant consultant', he wont let you down. They will find you something that your body wont
react to - they did for me!

Best of luck

Gogs

Most RAS teams have regular meetings to discuss specific patient therapies in the round and to sign off on the fact that each has met the clinical criteria for a specific medication. In some ways you have cleared the highest hurdle - that of getting onto a biologic. Now it's more a question of which one. I think you're right to hang on in there with this consultant and hope for the right outcomes - which is what he wants for you I suspect.

Hi Graham,
When I had rituximab, I had what my consultant later described in a letter as a "severe" infusion reaction. Sounds very dramatic, but really wasn't and an hour later I was going home on the bus!
When you have your infusion, there's a nurse with you all the time - if she goes on a break, another nurse takes her place. She asks whether anyone is having their first infusion, and takes note. You have Piriton and steroids to damp down any reactions, then they start the infusion at a very slow rate. If all goes well, they turn up the rate. That's when I started to get very itchy. At first, I thought I'd put up with it but then it got worse - very itchy scalp, chest and back, face felt hot and throat was starting to prickle. Asked the nurse if this was normal, and she took one look and turned off the infusion, then took my blood pressure, temperature etc., A doctor was summoned to put Piriton into the line, and the nurse phoned the consultant for advice.
When I went to the ladies, I could see that my face was red, and apparently my temperature was up. My blood pressure was still fine and pretty soon after the infusion stopped, with the help of the Piriton, the other symptoms resolved.
Half an hour after that, I was able to go home. Felt dreadful about the fact that they were going to pour all this expensive drug down the drain!
After this, I had no drugs for a month. Then at my request I went back on Enbrel for three months, which didn't work. Then I started Humira which I 've been taking for 5 months, and yesterday saw consultant who is adding methotrexate to the Humira. Can't ever have Rituximab again, obviously.
So you can see that you will be well looked after and monitored. There will be someone close by the whole time. You are very unlikely to get any symptoms but if you do feel anything unusual, mention it straight away, and the nurse will stop the infusion while she checks you out. There was another lady having her first infusion, who was at the end of the process and had felt fine all the way through, and that is much more usual.
Have courage - you will be well looked after, and Rituximab is supposed to be the best drug for severe rheumaotid arthritis like yours. There was a woman next to me who had had severe RA all her life, who had had several infusions, and it had changed her life.
Good luck
Helen