What other meds can I try?

[Dmcquate88]

I’m currently taking Actemra and Otrexup both by injection once a week and have been doing so for about 2 years now. I have been having severe pain and extreme swelling in both of my knees for the past two months ever since I had to discontinue temporarily due to having a full right hip replacement as a result of joint damage from THE RA and my doctor gave me a prednisone taper to “get it under control” however when I finished the taper, within 24 hours the pain and swelling is back. I’ve already taken Humira and Enbrel in combination with the Otrexup and didn’t have good results with either of those after a few months. I feel like I’m running out of options of medications that could potentially help. Any suggestions? PS I’m not crazy about the Actemra in general because I feel like when I take my injection I spend the next day or so feeling very fatigued and just really crappy in general. Wondering if that is a normal side effect anyone else experiences when they take it.

[helixhelix]

Humira and Enbrel are drugs that inhibit anti-TNF, Actemra inhibits IL-6. There are other biologic drugs that inhibit B cells, ones that inhibit T cells and the newest kids on the block are JAK inhibitors. So you have three different groups of biologic drugs still to try. Talk to your doctors about whether a change might help you.

Hope the hip is settling in well so at least that's a positive result.

[wishbone in reply to helixhelix]

helix,

I'm seeing my rheumy on thursday and need to let her know whether or not I am going to start taking baricitinib. Thought I'd made my mind up and was going ahead with it, but since seeing my chest consultant a couple of weeks back I'm not so sure.

The thing is I have a serious lung condition, which you're probably aware of as I've posted about it enough. Anyway, recently saw my chest consultant who told me there's promising research going on that JAK Inhibitors may help people with COPD and other lung conditions, but as yet no clinical trials have taken place. I've done some research, and though it's very early days, JAK Inhibitors do seem to show some promise, although much of what I googled up is too tech for me to grasp. I'd go ahead with the BARI but, and this time there's a very big BUT, my consultant also told me it's possible that baricitinib could cause my lungs to further deteriorate.

As you seem to be pretty up to date regarding RA meds, I was wondering if you've heard anything with regards to the above research?

Apologies to Dm for wandering off topic.

[helixhelix in reply to wishbone]

The one thing I do know is that you are stuck between a rock & a hard place..... tough choices. Sadly, the type of JAK inhibitors that are being developed for COPD are not the same as the ones for RA. So unlikely that it will get to a point that you can take one pill for both.

I can't really help you with the choice. These drugs do have short half lives, so leave your body quickly, which is a positive if things start to go awry. Perhaps you need to question your RA consultant more about the probability of this happening, the monitoring they will give you to detect changes early, and what other choices there might be? One of my favorite questions is "would you recommend this to your mother if she were in my position"

[wishbone in reply to helixhelix]

Thanks for that helix.

Yes, I'll definitely be having a serious talk with my rheumy when I see her on thursday. I thought it best to try and get as much accurate info as I can beforehand. Just hope she's done her homework.

I did read they are trying to develop a JAK asthma type pump for COPD. Apparently this lowers the risk of side effects compared to oral tablets.

Not sure I put much faith in what my chest consultant told me. It was all a bit weird...when I first mentioned I might be starting JAKs he didn't seem too keen and mentioned issues with another similar drug, and said they could further damage my lungs. A few minutes later something seemed to click with him, I think he probably remembered about the research going on, and he became quite excited at the thought of me starting JAKs and was suddenly all in favour of me taking them. He was going to discharge me but because he thinks I'll be going on JAKs he wants to see me again in a year's time. When I asked him again about the chance of JAKs causing further lung damage he again said yes it is possible though it seemed slightly less relevant this time.

I'm a fairly level headed bloke so don't think I'm being paranoid here, but it seemed as If he was more interested in me being a guinea pig than my well being. Just hope I can get more solid advice off my rheumy.

I know it's entirely up to me, but I really need more reliable information before I can make a proper decision. You're probably aware of my increased sepsis risk if do start immune suppressants but I'd be willing to take my chances with that, it's my lungs are the big worry, which I know could deteriorate in any case. That said, I certainly don't want to speed things up if I can help it! Being stuck between a rock and a hard place pretty much sums things up. At the minute, unless my rheumy can dissuade me then I think I'll be passing on the JAKs and taking my chances with how things are.

Thanks again

[AgedCrone]

You must ask your rheumatologist....what helps one person can be useless to another, so it's back to the Doc I'm afraid!

[Dmcquate88]

Thanks for replies everyone! Luckily I go to specialist this week so will be discussing options for the future! The replies will be very helpful. It’s been a tough road these last couple of years and I have two little ones so I don’t have time to rest I need to stay active and enjoy these years with them! Hoping I can find something that will work better for me! Glad I found this app as most people I socialize with do show empathy but can’t truly understand the difficulties we face just trying to function through an entire day!