Orencia

[Julieladix]

Hi. I posted about orencia a few weeks ago. My question is, I'm at four months now without any improvement at all. Actually I might be slightly worse. Is it possible that in the next month or two that I would suddenly see improvement? I'm getting very discouraged. I see my rheumy tomorrow.

[Lucy11]

Sorry to read that you’re still not seeing any improvements. When I was waiting for Orencia to kick in and feeling awful my doctor kept increasing my MTX dose which helped. I was also told taking both together works better.

I’m now having my infusions 6 weeks apart and lowered MTX to 7.5 mg

You’re in a tough place. Should you switch or wait longer? That’s hard because you’ve already invested so much time on this one. If you don’t want to add MTX then your doctor may really push you to switch.

I know you really miss Humira but the likelihood of it working again isn’t great is it? It might be a good idea to have another Biologic in mind before your appointment. Hard stuff. Good luck.

[Julieladix in reply to Lucy11]

Thanks Lucy 11. I know I have invested four months into orencia. I can't take methotrexate bc of liver issues. I just started sulfasalazine three weeks ago. Since there are a lot of people who haven't seen improvement till around the sixth month, maybe my doctor will let me try it for two more months. Who knows, maybe it will finally start working. Guess I'll wait and see what he says.

[Lucy11 in reply to Julieladix]

It took between 6-7 months for me to go into remission but I was gradually getting better the whole time. I never felt like I was getting worse on it. Not sure that helps.

[kaypiercy]

HI

It does seem to take a few months before there is any significant changes with Orencia but for me it has been worth the wait. I have been on Orencia for just over 18 months and it took just over 6 months before I began feeling better and now, since being on Orencia I had a significant improvement I have greater mobility and less fatigue, I still have flares but these are not so painful, best of all I do not suffer any side effects unlike other bio I have been on. I am now more careful of what I eat I have found that Cabbage works best and potatoes and fatty meats can often cause a flare, so I now eat lots of veg, I think I am becoming a vegetarian (never thought it would happen 🙃). So, from my own experience, I would say its worth hanging in there for a little longer and I wish you all the best in getting some improvements.

Kind regards

Kay

[Julieladix in reply to kaypiercy]

Thank you so much Kay. I do feel that I might as well wait two more months. If I don't, I will always wonder if it might have worked. That's interesting about the food connections. I noticed when I have a lot of dairy, I feel really achey the next day. Wasn't sure if it was my imagination or not.

[Beviejon1]

It was 6 months before I noticed any improvement on orencia.Sadly after 4 years it stopped working .