Going to be put on Cimzia anyone else taking it,I've never heard of it personally

[Mark-1411]

Hi All

My First question ever, mailny because as the question says i've never heard of this one.

I have been trialling Golumamab for the past 12 Months which worked for the first 3 months well but then i seemed to plateau, the trial finished in August, what i would say is that since then my RA has got a lot worse so it must of been helping. Anyway i had to see the trial team for the last time recently and i'm told i'm told that i will be put on cimzia.

I would simply like to know if anyone else is taking it as i have never seen it mentioned in questions before ,does it work? side effects if any? things like that...

Regards

Mark

[avjh]

Hi Mark. I ve been on cimzia for the last couple of months. Its other name is certolizumab pegol.It s one of the Anti tnf's.I have been self injecting it every two weeks and so far haven't had any dire side effects.I also take methotrexate by injection so it's sometimes diificult to know whats affecting what.It sometimes makes me feel a bit tingly in my hands and feet but this soon wears off.I did get this checked out.Also my fingers cramp sometimes.On the whole I have found that I have felt a lot better physically.Did have a bit of a wobble this week but I think that was due to the change in the weather.Nras have very good info sheets on anti Tnf drugs and the helpline is good too. Hope it works well for you x

[Mark-1411 in reply to avjh]

Hi

Thanks for the reply.

Judging from the replys i've it doesn't seem to be a popular drug as your has been the only reply. The nurse at the trials clinic said it was trialed sucessfully by them a few years ago and those patients on it are still on it so i will have to wait and see. My appointment is not until the beginning of november but the way things are going i will be seeing them in the next few days as i'm siezing up.

I hope it keeps working for you..

Mark

[joan_w]

Yes, I have been on Cimzia for 17 months now and it has changed my life. Before I was taking MTX and leflunomide (top dose of each) but still having flareups every 6-8 weeks. Since going on Cimzia I have not had one flare up and only 2 flares in my shoulder joints (1 flare in each).

I also like the syringe, it is large and designed especially for arthritic hands to be able to use easily.

I hope you have the same success, do let us know how you get on.

Jo

[Mark-1411 in reply to joan_w]

Hi

I have just over 3 weeks before i get my first appointment for cimzia, but i am going back to the trials clinic in the morning because since stopping my trial drug i have got a lot worse,i'm hoping to get a steriod injection.at the very least , something that will last me the 3 weeks..

Mark

[HarleySue]

Hi Mark, I was put on Cimzia last October as my first anti-tnf. I was in terrible pain and almost immobile at the time and the Cimzia worked very quickly whilst taking the intial three double doses. When you start you inject twice each fortnight for 3 times then reduce to one injection per fortnight. The injection is very easy to handle and Healthcare at Home, who deliver the drug, are excellent. Unfortunately for me as soon as my steroid intake reduced below 5mgs day my RA symptons began to return but I was successful on Cimzia for 11 months. I am now trying another type of B cell therapy, Rituximab. I was told by my rheumy nurse that 15 people were on Cimzia in the South West and I was the only one not to have success with it. I cannot tolerate MTX and that may well have been my downfall. I hope you have success with it

Good luck

Sue

[Mark-1411 in reply to HarleySue]

Hi

I must admit to feeling rather negative about RA drugs so far.This is because nothing seems to work for me, they help but i hear how other suffers go on drugs and do well, for me they just don't seem to work. My trial drug it now seems to me was keeping it under control to a point, but now its finished i feeel like i've been run over by a bus. Since my RA started with a bang i feel totally useless,i used to do DIY , go to football matches , walk the dog, everything you would expect to be able to do, but now i can't even hold a screwdriver.

When i was diagnosed i was put on MTX, Arcoxia, Hydroxycoroquine & folic acid.

I have no problem at all with MTX or Arcoxia or folic acid, but taken off Hydroxycloroquine due to a rash which seemed to be spreading (similar to shingles) worst was my arms.

Anyway i'm back at the trials unit in a few hours as i'm between drugs and departments and i'm hoping they stick a great big needle in me full of steroid, do care where Bum ,Knee , shoulders, as long as they do it.

Bye for now

Mark

[cherry2]

Hi, Ive been on cimzia since february and have seen my inflamation go down and down, much less stiffness, less pain, but hasnt done much for my lethargy which is still a big problem. I would say go for it and see how you get on, the improvement was gradual and maybe now has leveled out - just remember its not a cure, take care.

[Mark-1411 in reply to cherry2]

Hi

I hope it does work for me, just so i can be abit more active.

Do you know the downside to getting on a drug that works, if your getting DLA & Mobility you can lose it, the fact you still have cerian needs doesn't matter to the powers that be..

Thanks for the help and i hope it carrys on working for you...

Mark

[My123 in reply to cherry2]

how long did it take for the Cimzia to start working ??

[joan_w]

As far as losing DLA & Mobility, I expect it depends on how much damage your RA has already done. Because of RA I have many problems, no grip in my hands so am constantly dropping things, the slightest pressure on my wrists, shoulders and hands leaves me in severe pain and my feet are really painful. Arthritis has damaged my knees and spine, and some of these problems can't be fixed so I will always have difficulty and pain on mobilising and doing jobs like preparing and cooking food.

But at least I don't spend days in bed with flare ups.

Jo

[Victoria-NRAS Partner Moderator NRAS]

Dear Mark

Don't be too put off by the lack of responses to your post (though you've had a few more recently). This doesn't mean that Cimzia is not a popular drug, merely that it is one of the newer anti-TNF drugs, having only been approved by NICE last year.

As people have said, we have an article on this drug:

nras.org.uk/about_rheumatoi...

There is also a good leaflet with frequently asked questions about the drug on the Arthritis Research UK website:

arthritisresearchuk.org/art...

Kind regards

Victoria (NRAS helpline)