Hi Rose,

Sorry the humira hasn`t worked for you - it`s so very hard when you pin your hopes on a new drug only to have them dashed again.

There are others on here who have tried/are trying Riruximab, but it`s not something I know much about myself, so no doubt someone will come along to advise.

As far as work is concerned, see how you feel over the weekend. I know what you mean about wanting something to distract you, but see how things go, and don`t rush back until you are ready.

Take care,

Kathleen C x

hi Rose,

i'm so sorry to hear Humira isn't working for you .. no wonder you're feeling a little depressed.

only you really know if you feel ready to return to work, i do see your point though.

and the thought of starting yet another drug adds to the mix doesn't it. i know i am feeling anxious about D Day next week for Humira ... i was exactly the same when i started Methotrexate. but i know it's a case of needs must for me now.

let's hope Rituximab turns out to be the one that works well for you, we have to remember that what works for one doesn't work for another with this dreaded condition.

try and keep positive and maybe give NRAS Helpline a call, they might be able to put you in touch with someone on it.

thinking of you,

Suzanne x

Hi Rose,

So sorry that the humira did not work for you, it's no wonder you feel down. I can't say I've heard about having to flush humira out of the system before starting another drug though, I'm sure people on here have gone onto other drugs from humira without that.

Lets hope you can start on the Rituximab soon and it works for you.

Love, Doreen xx

Hi Rose,
I've been reading your Humira, story for a while, so sorry you've had all the itching and bad reactions and things. I have rituximab and am going for my fourth round in September. The good side to it is that although my first round did nothing for the RA, the second round of infusions, helped slightly, and the third round gave better results still. I usually have them six monthly but some people go a year without needing another one.

I too had failed on Humira and Enbrel. I haven't had any bad reactions to the infusion other than a drop in blood pressure at the time its given and a very slight itchy throat, but that usually goes after half an hour or so. I'm a bit woosy that evening, but that's probably de to the piriton, then I'm wide awake for three days due to the steroid they put in at the same time.

I remember I had to wait 4 weeks for the Enbrel to leave my body before I could have the rituximab, but the waiting list at the day unit here is that long anyway. For me the day of the infusion is just a day to curl up in their reclining chair in the day unit, take a couple of rubbishy magazines, listen to some music, take a nice lunch, maybe meet other people who are also being infused and chat with them and generally have a lazy day with on tap tea and coffee - Much easier than jabbing yourself with that Humiria pen. Don't be put off as bad reactions to it are qute rare, and the staff are very well trained in how to deal with it, that's why they do it in hospital.

Another advantage of Rituximab is that you will now have room for food in your fridge rather than it being full of injector pens.

Good luck with it Rose and don't go back to work until you are fully better.

With best wishes
Sheila

So sorry to hear this Rose - after waiting so long to get started you must be disappointed. I had to change to Cimzia and have had no adverse effects (though little improvement either) - it is all very unsettling and I'm not surprised you are feeling low. Just wanted to let you know I'm thinking of you and hope you feel better soon xx Ailsa

Dear All

Thank you all for your good wishes, I really do appreciate them it jollies me along. Thanks

Seen Doc again he wants me to have another 10 days off, so that is from today.

Weather been beautiful in Somerset today, had my Granddaughter and went for stroll on the
beach and she had a donkey ride. Shattered now so going to bed.

Thanks all though

Hi Rose

So sorry you have had such a bad time lately. You must be so fed up. There is nothing worse than being in pain all the time and feeling tired. I have been watching your progress with interest as my consultant has taken me off Enbrel which is not working and changed me to Humaria, I am really dreading it now having seen what you have been through, but I prefered the idea of continuing with doing my own injections rather than haveing an infusion of something else. I have been off work since November 2010 apart from a two week attempt at a phased return to work which proved unsuccessful. I have just submitted my application for ill health retirement and am sure I will feel much better when I get the results of it all, rather than being in a limbo state which I am at the moment.

I really hope that you are more successful on your infusion and that you get lots of rest.

Louise

hi Rose,

really sorry to hear the struggle you're going through,

i think the sooner you make the next step of going onto another TNF the better,

hope some one help with the Rituximab .. the only other suggestion comes to mind is giving the Helpline a call, they may know someone on it and be able to make contact with them for you.

hope the rest off work helps,

keep posting and let's know how you are doing,

Suzanne x

Hi Rose

The trouble with all these drugs is that what suits one may just not work for another there is no rhyme of reason When I was having the infliximab infusions all the " regulars " were going great guns at the infusion clinic and psychology I thought I would be just like them and ended consequently staying on it for nine months ! I kept persevering with it ( that s what we do with RA because we usually have to ) and it was when I ended up with a CRP score of 104 and felt total rubbish which was often the case like you know.I then was offered Cimzia, and from start to finish it took me only 3 weeks to get on it - couldn t believe my luck as you can imagine, thinking of you.

I hope you can get some positive news with the ritiximab.

Julia x