cimzia

[jillyham]

Hi,

Long time no write,hands have not been up to typing and my body too shattered to cope with anything other than getting through the day.

Am having to cope with the DWP and the DLA who are both being horrid and saying that ra is not that bad and i can still go to work,ha what a laugh,would love them to live in my painful shoes for one day and see if they say the same.

The main reason for writing is that I have recently started cimzia,the drug you have to inject yourself,and am still taking leflunomide with it.

The first dose gave me my first relief from some pain in years.a wonderful feeling that I want to continue.Though all my symptoms have certainly not gone and I do still have pain I am worried that this first feeling is just a reaction to the new drug and will wear off.Does any one else have experience of this drug and is just a 'flash in the pan,' so to speak.

I have read some of the blogs and they seem to be saying that this drug is great,but I have felt better so many times on other only for my RA and OA to come back worse than ever and then have to stop,wait 3/6 months to get them out my system and then start again.

[diane_83]

Hi,

I started Cimzia in Oct last year and for the first two times I had double doses - don't know if you are the same?

Well after the first double dose I felt really good and the same after the next double dose but when I dropped to single doses it stopped having the same effect.

Please don't feel disheartened though, there are a few people who attend my clinic and started on it at the same as me and it has done wonders for them! I arrive there and look at them with a bit of the green eye!!

It seems to be like everything else, its simply your luck whether it works or not. I will keep my fingers crossed for you, but not physically you understand!!

Good luck!!

[jillyham]

Thanks so much for writing back.My clinic are making me have 3 'loading doses,' and yes I am feeling better,but was worried that when it goes down to 1 I wont feel so good.From the looks of the blogs it seems that this is pretty normal and we have to accept that any pain relief is better than none,am so fed up with having this and people around not realising the agony your in,know the green eyed look,do that to most people these days lol.

[diane_83]

Lol I know its a bad day when I look at women in her 70s and think - I want to do what she is doing!!!!

It can be difficult, I am only 29 and at times I feel like if another person says to me "you're too young to have arthritits" I am going to bash them with my stick!

Persevere with the cimzia - hopefully its the magic potion that will work for you!

[Vonnie55]

Hi there,

Iv'e just caught your blog and thought i would pass on some info to help.

It's not in relation to your drugs, but referring to the comment made to you by the DWP re your DLA, it made my blood boil.

They really havn't got a clue, well lets face it, they just want to target vulnerable people and take their much needed benefits away, in the name of catching malingerers and supposed to be helping those that need it most, Yeah right!!!

You may wish to have a look at an excellent wesite benefitsandwork.co.uk

They are nothing to do with DWP and have guides and help related to DLA/PIP.

I have had terrific help from it, have a look and hope you get some help.

Good luck.

Vonnie

[samjam]

I am also on Cimzia and feel that it has made a difference. I take the injections two weekly but must admit I always know when I am due to take another dose as my hands begin to swell and become very painful. However, once I have had my Cimzia jab the swelling starts to go down.

I am on triple therapy - Methetrexate and Sulfasalazine.

Good luck and I hope it works for you.

[joan_w]

I have been on Cimzia for a few years now and yes, I still have a lot of pain. My consultant has also told me to continue taking MTX and leflunomide. Before taking Cimzia I was having a flare every 6-8 weeks which put me in bed for about a week. I felt as though all I did was try to get through a day at work and then go to bed.

Since taking Cimzia the only flares I have had have been when I had to stop taking it before and after surgery. I have had 3 major operations in the last year and after each one, about 4-5 days after surgery, I get a flare and if that is not treated with steroids then about 1 week later I get a major flare.

So although I am still in some pain, Cimzia has been a lifesaver. I now have a social life and can continue with my hobbies.

I did read about someone feeling quite unwell a few days before they were due for an injection and their consultant let them take it every 10 days. Not sure whether that could happen now with all the financial constraints.

I hope you have lots of success with Cimzia. Do let us know how you get on.

Jo