Need some advice: Switching Biologics

[missjme]

Need some advice: switching biologics

I was diagnosed with RA in November of last year and started on sulfasalazine, prednisone and humira in December. I have had reoccurring flares since then, but now I'm on a 15-day streak of being relatively pain-free, this is the longest I've gone and I'm so thankful and enjoy feeling somewhat back to normal but unfortunately, my rheumatologist wants to switch me from Humira to Orencia because she is concerned that my swelling has not gone down in my wrists, hands, and knees. I am so worried to do anything right now that will end my pain-free streak. I'm sure my rheumatologist knows best but I'm just wondering if maybe it took 6 months for Humira to start working and now that it is, maybe my swelling will go down too. Unless that should've have happened long before now. I'm just really confused about what I should do, any advice or comments would be greatly appreciated. Thank you so much for taking the time to listen.

[Beckywood89]

You might it’s not as bad as you think. The sulfasazine will be working and will continue rondo so while you make the switch. The swelling should have gone down after 6 months

[ruth_p]

The problem is that it’s the swelling that causes the damage to the joints so they need to get that sorted to help in the long term. It shouldn’t have taken 6 months for the humira to work. Remember your rheumatologist knows what’s medically best and wouldn’t be swapping you without a reason. 🙂

[Brushwork]

If you still have swelling, pain or not, your disease is very active. The goal is to put RA into remission, where you would have no swelling or disease activity, but sometimes we still get pain.

I would, on this occasion trust your Rheumatologist.

[dwsurquhart]

I would start asking your rheumy on why they are saying orencia. I started out on all the dmards, then humira, had chicken reaction to humira, then went on Anakinra (kineret), it did nothing, then I got onto Tocilizumab. It has been a gam changer for me for over 3 years now. Took all my swelling and inflammation down. My crp was up at 157 supposed to be less than 3, in 3 weeks and has kept it down. Only up to 5 when I had the flu. This even got my bakers cysts to go away.

Scott

[ruth_p in reply to dwsurquhart]

That sounds just like me with the toc, I had had varying degrees of effectiveness from enbrel then humira until the humira was no longer working at all. Like you my CRP went up to 178 I went on the tocilizumab and it went back down to less than 1, it literally worked within 24 hours of starting.

[charisma]

Sorry to hear you have RA. Swelling should certainly be addressed, and if disease activity is adequately subdued, swelling will be absent.

It’s good that you have noticed some improvement though, and I can’t blame you for wanting to hang on to it! It is such a relief. Humira was ineffective for me, changed within three months since the longer active disease goes uncontrolled, the more damage is done to joints.

It sounds as if your Rheumatologist is a good one; do discuss your treatment options and ensure it is a joint decision made from informed viewpoints shared with you.

No idea what doses of Sulphasalazine or Pred you are on but those may need adjusted too. Steroid should be short term only, by mouth. Injections are less risky if they work for you.

I was first diagnosed in Dec 2015, finally began to feel a lot better by late June/early July 2016, having tapered off steroid to see if DMARDs were working. It was indeed difficult. Early, aggressive treatment is the way to go, and it seems you have received this.

It can take time to find each person the way forward that best suits them. Best of luck when you talk to and see your Rheumatologist. 🙂

[Silverpixie]

Take your rheumatologists advice. I had 5 different biologics before they hit on tocilizumab which has been life changing for me. That took 4 months to work.

[missjme]

Thank you all tremendously for your feedback and for taking the time to reply to my concerns. I sincerely appreciate your insight because it really reassured me and pointed me in the right direction. You all were a breath of fresh air with your comments and cleared up any uncertainties I had. Thanks to all you, trustworthy sources I am a lot more relieved with making the decision to switch biologics.

I did believe my rheumatologist probably knew best but was still a little hesitant but what do I know, really? I am very new to all of this. I have never even heard of tocilizumab but see that it has helped quite a few and you have also made me realize that I do in fact, have some say in the matter, so I will definitely mention it to my rheumy.

Once again, I am so thankful for all your wisdom, support, and helpful advice, it has really alleviated my worries.