Cimzia

[HelenDalton]

Hi, I'm new here . My husband (a technophobe) has been on Cimzia for a couple of years now but it doesnt seem to be working as well as before. He is nervous about telling his Rheumy nurse this in case she stops him using it and doesnt replace it with something else. Has anyone else experienced a biologic becoming less and less effective? What happens in this situation? I am assuming that there are alternatives that she will offer him? TIA

[Phoo2]

No tell nurse immediately . I believe they can't stop you from accessing biologic if you have had one before.

The trouble was my rheumy kept telling me I was in remission when I was struggling.... when Enbrel finally failed for me it took the hospital months to organise a swop in biologic .... over 6 months of needless suffering... I can't tell you how cross i am ....

I have now found out that it is quite common for biologic to stop working and there are several they can swop you with so shout out!!

Don't let pain get too bad ..,., hope that helps ..... I have started cimzia now and it seems to be helping but why I have spent over half a year in capacitated I will never know!!!! Argh!! Cue - complaint letter to hospital. Please learn from my dreadful experience ... wishing you and your husband all the best

[HelenDalton in reply to Phoo2]

Thanks ....

[nomoreheels]

Hiya Helen, welcome. Well, if Cimzia is no longer working as well he really does need to let his team know, particularly if he doesn't have a Rheumy or nurse appointment any time soon. It will most likely be changed to another anti-TNF, they won't leave him high & dry, promise! Once you start these meds you continue on them, otherwise it allows the disease to run rampant.

Maybe it would help him to understand more about anti-TNF's & biologics & also about his options if he's under the impression if one becomes less effective that's the end of treatment? This from NRAS explains nras.org.uk/anti-tnfa-treat.... The following link goes into more detail nras.org.uk/data/files/Publ.... If he doesn't want to read them online you could always print them off for him.

If this doesn't help we're happy to answer any questions, there are lots of members here on this med & others. 🙂

[HelenDalton in reply to nomoreheels]

Thanks.... he has a Rheumy appointment tomorrow thank goodness, and after all this reassurance that he wont have his meds taken away from him, he is (at the moment) going to discuss it with her... he is a bit of an ostrich about all this - finding it hard to accept that its not going away...

[nomoreheels in reply to HelenDalton]

Oh good! Maybe with our responses being fresh in his mind will encourage him to broach the subject? The trouble is it's not something that is just going to go away & being undermedicated or incorrectly medicated as he is if it's not working as well will mean he will start having more problems. Reassure him that Rheumy nurses understand patients' reticence to change meds, especially when they've had good results & felt well on them but conversely they also recognise when they aren't doing so well.

Do you not go with him to his appointments or does he prefer to go on his own? My h always attends mine with me & I find it helpful, he remembers things I don't & I can't get away with when asked how things have been saying they've been ok when in truth things haven't been so rosy! It doesn't happen often but sometimes we don't like to admit some things!

Tell him good luck for tomorrow & would you please update us, if you don't mind? 🙂

[HelenDalton in reply to nomoreheels]

Ha I do try to go with him, but its not always possible - and this time he has reassured me that he can sort it out himself... I will update ! Thanks for your interest and support!

[Scottishlad]

I have been on Cimzia for about 3 years. I was prescribed it along with a reduced dose of Methotrexate. At about 18 months I had Hydroxchloroquine added back into the mix as I was getting flares. It is possible that the Rheumy might add some more DMARDs in the equation.

It is always possible to get flares when you are on a biologic therapy but they will be less severe than the ones you would have been experiencing before.

Best to be honest with the Rheumy.

Hope this helps

Cecil

[HelenDalton in reply to Scottishlad]

Thanks. He is also on methotrexate and has been for some considerable time. I feel its time for a change up, but he finds it extremely difficult to admit that he is in pain... He is feeling very reassured from the answers we have had on here and is (at the moment) going to speak to his nurse tomorrow about a review of his meds.

[HelenDalton]

Update: hubby went to his appointment this morning and told his rheumy nurse how he was feeling. She said that before changing him to a new biologic she would like to try upping his methotrexate first and that he should make a concerted effort to shift some weight.

So he is feeling much better just for having said how he is really feeling, and that he hasn't been taken off cimzia. And it also means that my weight loss will improve cos it's always easier when he is on board too!

Win win win! So hopefully a higher dose of methotrexate will steady things for now!

Thanks for all your support!