Unsure about what treatment I can have after 2 biologics

[Gjbrose]

I was seen by my rheumatologist on 12th January who was reviewing my case after 4 months, I informed him that I was not feeling any benefit from my 2nd Biologic Benapali my hands, fingers, knuckles, feet especially inside of my right ankle are still painful and swollen.

I also take Methotrexate injections weekly and Naproxen, Sulfasalazine and Hydroxychloroquine with Gabapentin added in October for recent diagnosis of Fibromyalgia.

I was diagnosed with RA September 2021 after struggling with joint pain in 2019.

My issue is I need advice what to do to go forward as he has implied that as there is no active inflammation in my hands and feet following an ultrasound!!

He is questioning trying another biologic and has left me on Benapali?

He appears to be relying on the pain management team to help me but this is psychological support, feel I’ve been left to get on with it?

Visually I still see outer swelling and have pain which reaches a point in the evening and first thing in the morning,

Any advice welcome I’m getting very emotional about this 😢😫

[Runrig01]

It depends where you are. Every Trust has its own policy on how many biologics they allow you to try. My own trust only allow 2. I have AS and had a spell where my pains all intensified. He did an mri, which didn’t show “significant active inflammation”. At the same time I was having breathing issues and referred to a respiratory specialist when a CT showed pulmonary fibrosis. After starting treatment for this, my other pains all settled and I was able to continue on the same biologic, that was 3yr ago and I’m still on it. They do say to allow 6 months for biologics to work, so perhaps he wants to see if things improve over the next few months. If no inflammation is showing, then perhaps it’s mechanical pain due to the changes as a result of RA.

[wishbone in reply to Runrig01]

Do you mind if I ask what treatment you've had for pulmonary fibrosis?

I was diagnosed with PF 8 year ago and was told by my respiratory consultant that it was untreatable.

[Runrig01 in reply to wishbone]

Sorry, I didn’t word that well, it’s not the PF the treatment is for. I also have micro aspiration, which she put me on Pantoprazole, and changed my inhalers. There is a biologic you can get, can’t recall the name off the top of my head, unfortunately your only allowed 1 biologic, and I’m already on one for my AS. My PF hasn’t progressed in the 3yrs thankfully, and lung function is stable

[wishbone in reply to Runrig01]

No problem.

The med you're talking about might be Baricitinib. I've been taking it for the last 5 or 6 years to treat my RA. My chest consultant told me that they thought Baricitinib showed promise of helping treat PF when I told him I was about to start taking it. More recently, when I saw my rheumatologist last December, I asked him about it and he did say that it can help people with PF, so fingers xxxx there!

That said, after 8 years with little change, my PF has noticeably progressed over the past few months, which is obviously a worry for me. Looks like all I can do is hope it stabalises again, which it had done before I was diagnosed 8 years ago according to my rheumatologist at the time.

[Runrig01 in reply to wishbone]

Sorry to hear your struggling at the moment with it. Nintedanib was the name off the drug now being used. Hope things improve soon for you 🤗

[wishbone in reply to Runrig01]

Thanks, the Baricitinib is not working like it used to so my rheumy wants to start me on a new med. I will mention Nintedanib to him when I have a phone appointment next wednesday. I prefer to stick with JAK Inhibitors if possible as I'm prone to infections. Funny how he never mentioned Nintedanib when I asked him about Baricitinib and PF. 🤔

[Rosie-NRAS Partner NRAS]

Hi Gjbrose, Sorry to hear that you are having a tough time at the moment. Our Helpline is open Monday to Friday, 9.30am-4.30pm and we always welcome you to give us a call if you would like to talk. Our freephone number is 0800 298 7650. Kind regards, Rosie @ NRAS

[AgedCrone]

You seem to be taking a lot of medications ….& you have only been diagnosed about 2.5 years……so you have added meds quickly…..so to try to cut to the chase…why not ask to sit down with your rheumy nurse & go through what each med addresses & ask her advice as to which you might think about leaving out. Then your rheumy might set you on a different path. We often have to stick with a drug for longer than we think necessary for it to suddenly help…

Let’s hope a different set of meds could help.

[CagneysMum in reply to AgedCrone]

This is good advice from AC 👍

[Gjbrose]

thankyou for your replies I really appreciate your support and will be speaking to my rheumatology team again 🤗

[RAstruggle]

I’m in a similar situation with Adalimumab. I was in remission for 10 years and suddenly I’ve had an almighty flare. I saw my rheumatologist and he has prescribed steroids for 8 weeks and he hopes the Adalimumab kicks back in. But the thing is, I am worried it has stopped working - we can all build antibodies to these drugs over time. I asked him about this and he admitted that yes, this can happen and has agreed to review my meds in a few weeks depending on how I feel. Go armed with as much research as you can when you have an appointment. Push for an answer as to what will happen. Good luck xxx

[Gjbrose]

Thankyou 😊