Cimzia - I hope it works

As5567

Me and my doctor have decided enough is enough and to officially declare Simponi as a failure, the drug DOES work but only for maybe 4-7 days at best, and then within a few days I'm back to square one. My blood results also show that on day 2 there is an improvement in my blood results but nowhere near any normal values. I am also on double the recommended dose which we was hopeful would extend it's effect to maybe 3 or 4 weeks but it hasn't done anything and I have now passed the 3 month double dose trial so its time to move onto something new.

So far I have tried Enbrel, Humira, Infliximab, Rituximab and most recently Simponi. I remember my old doctor telling me how having an injection TNF would just be going backwards in terms of treatment and I really do need the IV versions simply because they are able to alter the dose to suit my needs where an injection is just a standard dose. BUT for now my current doctor does not agree and wants me to take Cimzia which I of course accepted because anything that has the potential to work is better than nothing. I the paper work process doesn't take too long, the drug is not approved by NICE for use in AS yet so there is a lot of additional paper work to be filled out and approved by the department before anything gets started.

One question I do have for those who have been on simzia, I can't seem to get a straight answer about what type of injection is supply here in the UK - Is it a pre filled syringe or is it a pre filled pen. By pen I mean the type where you click the button and it auto injects. I always ask for the pre filled syringe but my doctor wasn't able to tell me if they do one or not

Slosh

I have no advice or information on Cimzia but just wanted to say that I hope the application for funding is successful and you hear back soon. Good luck

stickywicket

Sorry. I can't help but I hope it works for you.

Starburst

I'm sorry that Simponi wasn't the answer for you, AS. You've had such a hard time lately.

Cimzia is a pre filled syringe and it's thick and gloopy liquid but I didn't find it painful. It was the only drug that put me into clinical remission and that gave me a very good quality of life. Sadly, I was taken off it as I developed GI symptoms that were later diagnosed as a condition of the GI tract but due to red tape, I was unable to return to cimzia injections.

I wish you all the best very of luck.

tjt6768

Can't help but just wanted to wish you the best of luck. .

barbara12

Sorry I'm another that cant offer any help, but I really do wish you well on it..and will have everything crossed for you ..good luck..x

As5567

Starburst wrote:

I'm sorry that Simponi wasn't the answer for you, AS. You've had such a hard time lately.

Cimzia is a pre filled syringe and it's thick and gloopy liquid but I didn't find it painful. It was the only drug that put me into clinical remission and that gave me a very good quality of life. Sadly, I was taken off it as I developed GI symptoms that were later diagnosed as a condition of the GI tract but due to red tape, I was unable to return to cimzia injections.

I wish you all the best very of luck.

NICE guidelines can be a real pain sometimes, I hope you're able to find something that matches cimzia for you. Like youself I would like to try Infliximab again but they won't let me, at the time I didn't think it was working excellent but looking back to how I was then in comparison to now I would find that quality of life more than acceptable.

I'm glad to hear that it's a pre filled syringe, makes sense now that I know the liquid is thick which would make it difficult to be used with a pen.

merri

Sorry to hear that the other drugs haven't helped. When I was on Cimzia about 8 months ago, it was a pre filled syringe. The only suggestion I have is to let it to warm to room temperature naturally before administering it, otherwise it stings a bit.

I hope that it helps and that the funding comes through for it quickly.

As5567

The people who decide drug funding has decided to decline the funding for my medication! This has made me very frustrated and even more so frustrated now because they want me to try another 6 months on Simponi!

Simponi is more expensive than Cimzia.....where is the logic!

stickywicket

How frustrating and annoying! I guess the logic lies in the fact that simponi did work for you, albeit not as well, or for as long, as hoped whereas cimzia is not regarded as appropriate treatment for AS. I hope the simponi has a longer-lasting effect in time.