Hello All.

Had my appointment with RA nurse yesterday. Got weighed (far too heavy), DAS score 6.5,
chest x/ray, and brushed slightly on 2 possible TNFs - Humira and Cimzia.? ? ? ? ?

I was told my joints were less swollen than painful, so thinking to myself 'oh no, does
this mean I can't have medication' does she think I am a fraud? I know I do not have
severe RA like some of my friends on this site, but I do suffer and I know that I am not
putting my pain on.

I now need to wait for my next appointment in a month apparantly, and I need to think
which TNF I would like to try.

The leaflets for both look near identical. Can anyone advise me good / bad ?

Rose

Hi Rose,

When I was assessed, and then passed, the criteria for anti-TNF therapy, it was my consultant who decided which one I would have, based on the progression of my RA, my metabolism etc. I`m not sure Cimzia was an option then, as the three that were mentioned were enbrel, humira and infliximab. I was put on humira, and as with Doreen, it made a huge difference to me in terms of mobility and quality of life.

I had already tried - and failed on - various DMARDs and combinations of drugs, but before humira I was struggling to do anything and everything, and couldn`t even dry myself after a shower. I have been on it for over three years now, and I dread the time it stops working. I try not to dwell on the possible side effects, as for me it was literally " Hobson`s choice." I haven`t suffered any ill effects so far, not even injection site soreness, and as Doreen says, the epi-pen is so simple to use.

It`s worth remembering that what works for one person won`t necessarily work for another, and no two cases are the same. If the consultant has left the decision to you, then ultimately it will come down to personal choice, in which case I would gather as much info as possible before making that choice.

Take care,

Kathleen x

Hi Rose

We have spoken before when I had to see a consultant privately because I had tried and failed on methotrexate & leflunomide and had been on steroids since last May ! The steroids were not helping my RA and I could neither walk or use my wrists, hands and feet and my shoulders were so painful. I had reached the depths of despair. My GP suggested the private route to get new treatment and I was prescribed CIMZIA. The consultant picked this for me as my DAS score was 7.9 and my ESR 93 and she said that although CIMZIA had only just been OK'd by NICE the results so far were positive and very quick. The initial wait for the paperwork to be done was 3 weeks and I started my first injections on October 14th. It's not as easy as an epipen as it is manufactured in a syringe but it is designed to be held easily with bad fingers/hands. You have to take 3 loading doses of 2 injections for week 0, 2 & 4 and then it is only one injection every 2 weeks. You inject into your tummy or thigh and they recommend you alternate but I have managed OK. I did have swelling around the injection site the second time but nothing too alarming. The results seem to be good so far. I think I expected too much and I am keeping a diary of any oddities as I do get excessive bruising, breathlessness and am still tired but nothing like I was suffering before. I can now get out of bed in the morning unaided and manage to wash & dress myself without too much discomfort. The aches I had throughout my body have certainmly improved and I only feel really bad when I have overdone it - my own fault. I am now able to walk with my stick outdoors although I still am building this up.
I have only taken 4 doses and am being re assessed at 10 weeks but I am definiately feeling far better in myself. My family have noticed that I am no longer weepy all the time and yesterday I had the strength to bake some cakes !!
CIMZIA is new but I would certainly recommend that it is worth trying. I was at the stage where I would have eaten an old shoe if they told me that would help .....

Hope you get the treatment as it has made a huge difference to me in a relatively short time ( I'm keeping my fingers crossed as I don't want to go back to where I was)

I have had to keep taking all my old meds , including the steroids, at the moment as the consultant didn't want to risk any further flares but I'm hoping after 10 weeks they can be reduced slowly - I'll let you know how it goes.

Hope this helps & good luck .

Love Sue x

Thank you all for your replies - need to do a bit of reading up

Rose

Hi Rose - hope you are feeling a bit better by now and have begun to make your mind up. I had my appointment todayfor 2nd screening and have come away with info on cimzia, humira and embrel but no real idea which is best. I think I would prefer something to take once a week rather than 2 weekly as there is more chance of me remembering to take it with the MTX. Only trouble is I can't remember which is once a week and which is 2 weekly! I will have to get back to my reading ...

Let me know when you have decided Rose. XX Ailsa

Hello Rose, I donte want to confuse you now that you have decided to go with Humira, but I have been on Cimzia for about 6mths now with great results, very little morning stiffness & all swelling &pain gone in my hands, mobility & strength have increased also day to day stamina is100% improved. Injecting is fine & doesn,t sting . I havn,t tried any other anti TNF,s so cannot compare. I thought I,d let you know as if you don,t get on with Humira you should be confidant in trying the Cimzia option. Best of luck I am sure whichever you chose will show you a big imrovement. Rosex

Hello

Say RA nurse for 2nd councelling and I have chosen Humira purely as more widely
used as been about longer.

.Had blood tests and subject to them being ok Im will prob start mid Jan. Fingers crossed.

I chose a pen type rather than a sryinge as it appears easier,

Cant wait to get on with it now.

Rose


Footnote we have had 2 / 3 inches snow today and snowing still - yes - Somerset ! ! unusual

Hello Rose

It's good that you've made your decision of which one to take, even better that you can't wait to get started on it.

When I was given the choice of two DMARD's my daughter couldn't understand why it was up to me to decided which one to take. She kept saying 'The doctor should decided and not you'. I understand what she meant, but its our bodies and if there is a choice of two then we should be given the option of doing our own research about the drugs and then making our minds up which one. After all, its our bodies that these drugs go in to and not theirs.

Hope that this one is a success for you and things start to improve........just think this time next year you might be a 'New Woman'

Take Care

Paula x

Hi Rose

Pleased to hear all went well, like you I couldn t wait to get going on the news meds - just want to start to feel better !

Take care Julia x

Hello Rose, it's great to here your good news. It does still seem a long way off but it may be a good thing that you are not sarting this week just in case you have any strange reactions. I do hope it goes well for you Rose, it's exciting to think you will be getting some relief at last. Take care. Glenys. x