Baricitinib anyone?

[wishbone]

All being well with my bloods I will be starting azathioprine, hopefully in the not too distant future. Was also offered baricitinib, which I think my rheumy would have preferred to start me on as she doesn't seem to have much confidence in azathioprine doing the trick. I'm a bit wary of it though so will wait to see if the azathioprine works first. Interested to hear any ones thoughts, especially from those who are taking baricitinib?

[bernese1225]

Hi, I’ve been on Baricitinib since 14th December. I’ve kept a brief diary on my profile page, if you’d like to have a read. I know we’re all different but I’m pleased to say it’s working for me. I feel as if I’m getting my life back. I’ve had adverse reactions to all DMARDs and 5 biologics in the past. Can I ask why you feel wary of taking it?

[wishbone in reply to bernese1225]

Interesting read there bernice, thanks for logging your progress, and glad that baricitinib seems to be working for you.

Except for hydroxychloroquine, I haven't been able to take any of the regular meds for my RA. It's not due to side effects as such with me, but because I run a significant risk of getting a serious infection if I take any type of immune suppressor. Although I've been infection free since stopping meds my RA has inevitably got a lot worse and has caused some lung damage too. So it's a toss up whether to risk further damage to my organs or risk getting another serious infection. Anyway, I saw my rheumy yesterday and we've decided to go with the latter route, but as DMARDs such as azathioprine have a lesser effect on the immune system - apparently anyway, then I'd prefer to try that first.

[carol555]

Hi Wishbone, I have been and still am on the trial for Baricitinib and have been taking it for over 4 years. Was probably on placebo to begin with as nothing changed for sometime and my joints got worse but once I went on the "rescue " therapy things gradually got better. For me I have always needed top ups but if you are newly diagnosed then this would do the trick. The trial is ending at the end of this year but as I am struggling with other meds I will probably be off it sooner. I have not had any side effects from this drug which is great but for me it's not quite enough. Hope this helps in your decision and good luck on azathioprine.

Carol

[wishbone in reply to carol555]

Thanks Carol,

I'm not concerned about taking a med that will get me into remission, I just want something to reduce this inflammation enough for it not to affect my heart & lungs, as explained in my reply to bernice. A little less pain wouldn't go amiss either but that's a lesser concern for me. You say that you need a top-up med along with the baricitinib (how the heck do you pronounce that daft name?!) so maybe it's not as potent a drug as say enbrel, which caused me big problems infection wise, but we are all different so who knows how it will react with me?

I am going to hold off starting it until after I've tried azathioprine. The reason my rheumy is so keen for me to start baricitinib is because my joints are deteriorating, my hands especially so. Obviously I'm not happy about the state of my joints, plus I feel and look like a dead dog most of the time, but am more concerned about infections and damage to my organs. Can't say I'm over the moon about starting azathioprine or any immune suppressant, but I need to do something about this darned inflammation so here's hoping it works.

[Hidden]

Baricitinib got a good press from rheumatologists at recent patients meeting i went to but have no personal experience: am i right in thinking it's the one that can be taken in tablet form? Anyway they said we'll all be hearing a lot more of it in future. Hope that's helpful: what is so frustrating about RD is we all seem to respond differently to different drugs, no idea why? Hope you find some respite soon, good luck x

[wishbone in reply to Hidden]

Thanks Kerena,

Yes, it is taken in tablet form.

Thought the blood samples my GP sent to immunology approx 6 months ago may have gone AWOL? So phoned immunology this morning to check. Was told that I am on the waiting list but the waiting time for non urgent cases is around 32 weeks and I've been on the list for just 25. My rheumy needs the results to make sure there's nothing underlying that may have been causing my infections, and could mean that I can't start azathioprine or possibly some other meds. No big problem though as I've been 18 months without meds so another month or two won't hurt.......I hope!

.

I

[Hidden]

32 weeks! For goodness sake; do feel for you, everything to do with this, drugs etc. all seem to take so long as it is. Feels like yr throwing chunks of yr life out of the window just waiting sometimes. Really wish you the best & hope one of them works x

[wishbone in reply to Hidden]

Politics and money are to blame..no more, no less!

Thanks for the kind words.