Appointment advice/cimzia/pain

[Nelliekel]

Does anyone have any advice for me?

On cimzia for 11 weeks now, I have an appointment next week, so will have been on it 12 weeks. I have noticed an improvement, but it's been very gradual. I've been able to reduce steroids from 7.5mg to 5mg and I take about half of the naproxen and codiene I was taking before.

I am also on Hydroxychloroquine.

However I am definitely not pain free, I've still got pain in my wrists/hands, knees and ankles that interferes with daily living.

I understand it can take up to 6 months?? For cimzia to be at its most effective, do I agree to continue on or do I push for another drug to be added? If there is anything. I don't want to switch from Cimzia if I can help it as want to TTC end of the year.

I feel a bit disappointed that in the 12 weeks I've not gotten the result I hoped for, and I'm utterly fed up as had this 18 months now and it's been one long flare start to finish.

Appreciate any advice, or what you would do or have done! Or even just miracle stories about how cimzia worked for you 4 months in, I'd love some hope.

[Neonkittie17]

Sorry, I’ve never had Cimzia. Hopefully someone else will post a reply to help you. I hope you can discuss your blood results re your CRP/inflammation levels and let the rheumy see your joints and talk re if anything should be added in. I hope it is a slow worker and it’s going to start working more for you anytime soon. I do understand your concerns though. I would be the same. Good luck for next week at the rheumy. 🙏🏻

[Whezziewhoozie]

Hi, I was on Cimzia for two years and it worked well. It’s supposed to be one of the better Anti TNF’s. Cimzia was great for me after the first dose I certainly felt a difference and then it was a bit of a roller coaster with ups and downs for the first 6 months before I stabilised. Think it didn’t help that it was every two weeks. Did you do the loading doses? So always felt rough at the end of the two weeks. However after 6 months or so it was less of a rollercoaster

Of I could have stayed on it I would have but I got COVID and it just seemed to stop working . So I was changed on to another biologic. Again that has been a rollercoaster but I stable on that now and mainly pain free unless I really go nuts…. I am in pain today as spent yesterday moving boxes!

Hope that helps

[Jen400]

Hi there, I have been on cimzia for thr last 3 years and like u on it to conceive. For me it wormed almost instantly...It was was about 2 months when I noticed the difference and I haven't looked back. I'm also on salazapyrin . It really has sorted out my RA, I would say stick with it and if no improvement in 3 more months. Maybe try something else. I am currently pregnant and still taking it as its safe in pregnancy. Good luck and I hope that at ur appointment u have a good conversation with your consultant...and they have other suggestions at this point x

[Scottishlad]

I've been on Cimzia for some time now. For me it worked fairly quickly, within a few weeks. I hope it does work out for you. For other reasons we ended up childless and I understand some of what you are going through.

[Nelliekel]

Thanks everyone. I did have a really severe onset so maybe I am expecting too much too soon, will discuss with the nurse but expect saying on it longer to see what happens is probably sensible.

[fred42]

I have been taking Cymzia for over 2 years now and am very pleased with it. The loading dose made an instant difference and unless I go absolutely crazy it works well and seems to continue improving. I take nothing else except for the occasional Naproxen, this is my 4th biologic .I am old, 74 and had my children 40 years ago when I was RA free, I'm sorry that you have this issue too.

Cannot advise, I hope you have a good and sympathetic consultant

🤞 Ann

[dbestdeb]

My dr set me straight pretty quickly about my expectations. She said success means I have fewer and less severe flares; I will not be pain free ever. I was in Cimzia with azathioprine for several years. It was a good drug until I had to stop the azathioprine. The Cimzia didn’t last a month without the other drug. I’m on to Orencia next month.

Don’t give up too quickly on Cimzia. It’s one of the better drugs.

[Nelliekel]

I do find it wierd that everyone talks about flares, because mine seems to be permanently bad. Thanks everyone, will definitely hold on for a bit longer I think

[wilbertjellyfish]

I'm really sorry you're having such a struggle with all this, unfortunately that's the roller coaster we are on. Things will get better. Perhaps you have reduced the steroids or naproxen too quickly and need to take more of them to help.

[Nelliekel]

Hi Alex! I was on cimzia for 5 months in the end and saw no effect. I decided to change biologic and have gone for tocilizumab (actemra) whilst this isn't actually approved for TTC & bf (mainly because there's not enough research) lots of women have been on it nowadays through ttc and bf and had no issues. 6 weeks in and I'm basically jumping out of bed most mornings! I'm about to cut my steroids down and my CRP was 165 at my appointment to change to this and now in 6 weeks its dropped to 8!

It feels like a never ending uphill battle, but when you find the right one it really works. My plan is to wait until december/Jan and to TTC now 😊

Good luck x