From Cimzia to ....what?: Greetings, fellow travellers... - NRAS

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From Cimzia to ....what?

Mostmoses profile image
11 Replies

Greetings, fellow travellers! I've been on Cimzia for nearly 3 years now and, while I'm not in remission, I have generally only relatively minor issues stemming from the rheumatoid arthritis. However, I am constantly plagued with these "relatively minor" problems, including eye inflammation, sinus issues, eczema, and joint pain in my feet. Each of these can be serious enough to significantly disturb my sleep 3-4 nights in 14 days and require ongoing doctor visits and ongoing cortisone treatments for the eye issues and eczema.

My rheumatologist thinks the Cimzia isn't quite doing the job and we are contemplating a change of biologic. DMARDS nearly killed me, so those are not an option.

Has anyone made such a change, and if so, to what? How'd it go? I know that we are each very different (there is no 'by the book' autoimmune disease) but I'd be very interested in what options are out there and what experiences people have had.

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Mostmoses
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11 Replies
helenlw7 profile image
helenlw7

I’ve been on Cimzia for 12 months. It’s my 3rd biologic. The first one, Etaneracept, worked for more than 10 years. After that I tried Adalimumab but it didn’t work at all. I inject Cimzia every 10 days. I don’t get any side effects from the Cimzia. I also take 15mg of methotrexate a week

Mostmoses profile image
Mostmoses in reply tohelenlw7

I didn't know every 10 days was an option; that might help me! Methotrexate landed me in the neurological ward for 72 hours with a spike migraine and potential stroke risk, so definitely out for me. Many thanks for the reply - I can ask my rheumatologist about a 10-day timeframe.

allanah profile image
allanah

Hi your rheumy decides which drug based on which art of the inflammatory cycle he wants to block according to your bloods and history . Have a look at nras website about biologics , it tells you what they are but at the end the medics will discuss the best option without xx good luck!

Mostmoses profile image
Mostmoses

Well, I'm not in the UK and not under the care of the NRA, but I will check their website (if it allows me to).

Green230461 profile image
Green230461

I had same issue as you! Even eye issues. I was moved from leflunomide to humira and then baricitinib which has solved the eye joint feet issues. Fortunately there have been great improvements in science over the past 20 years. So be brave and go boldly into 2025. RA WARRIOR 👍

MJSlide1958 profile image
MJSlide1958 in reply toGreen230461

Hi I would love to know a bit more about baricitinib. Is it used as a biologic but in tablet form? Does one have to take Baricitinib with another drug?

Green230461 profile image
Green230461 in reply toMJSlide1958

My baricitinib is a little red tablet I take one daily. I take omeprazole to protect my stomach and sulphasalazine two tablets these are NSAIDS My pain level went from 139 to 34 within six months and has remain low. I had to have a shoulder replacement because of RAdamage but regular X-rays have shown this has decreased considerably.

I was on humira jab for over ten years, caught shingles and it just stopped working so I was put on baricitinib because my bones were being attacked.

It has been good for me I still get fatigue and need a stick to walk but bones are good. Hope you are well on it I have had no reactions to it.

MJSlide1958 profile image
MJSlide1958 in reply toGreen230461

Thank you very much. The advice is for my 32 year old daughter who has been on Enbrel since 2010 and added MTX after lockdown.

dwsurquhart profile image
dwsurquhart

I started out on all the DMARDS and they almost killed me as well. First biologic was Adalimumab (had very concerning donut shaped hard blisters for with that one) and the anti-tnf did not work for me, went from that to Kineret (daily sub q injections at home. Tried it for 49days with no symptoms relief. Started on Tocilizumab over 9 years ago now and it is still working for me. This one I get as an infusion once per month, which also means I can see my rheumatologist or his nurse every month so they monitor everything.

Mostmoses profile image
Mostmoses

I'm interested to hear that someone else reacted badly to DMARDs. I know they work well for many (maybe even most)!

Whezziewhoozie profile image
Whezziewhoozie

hey I changed from Cimzia to Tocilizumab and it’s the best thing I have ever done. Cimzia was good but like you say I kept having sinus things and itching .. I stayed on it because it kept my RA at bay. I am now on Tocilizumab and I have little side effects and it’s really helped my RA too. Hope that helps

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