Tacrolimus for inflammatory arthritis

[Elaine777]

Hello, I've never posted on a forum before but this is an interesting page and I'm wondering if anyone has shared my experience with arthritis and can offer advice!

I have sero-neg inflammatory arthritis, I've not been given a more specific diagnosis but with a long family history of rheumatoid arthritis I'm expecting this to be the diagnosis one day. Anyway, I've been on 25mg MTX for a couple of years now and the disease isn't fully controlled. I've tried sulfasalazine and leflunomide over the last couple of years but had to stop because of side effects. The next drug I've been offered, but haven't yet agreed to, is called Tacrolimus but I've struggled to find any info on it. What I have found just lists nasty side effects, which don't make it seem appealing! At the moment I've opted to manage on MTX alone and just live with the pain but doubt I'll be able to do that forever.

Has anyone had any experience of Tacrolimus?

Thanks

E

[helixhelix]

Only as a skin ointment for eczema! Had no idea that it was used in RA - presumably cheaper than offering you biologics but that could just be me being cynical......

Have you read this?

ncbi.nlm.nih.gov/pmc/articl...

[Elaine777 in reply to helixhelix]

Thanks for your reply helix and for the link, I will have a look at the study. I had a similar cynical view tbh! Suspect I'll have no choice but to give it a try at some point.

E 😊

[Moomin8]

crd.york.ac.uk/crdweb/ShowR...

Found this link - any good?

[Elaine777 in reply to Moomin8]

Thank you Moomin8. E 😊

[Superfloozie]

Hi there, I have Psoriatic arthritis and I was on tacrolimus for just over a year, it is an immune suppressant similar to sulphasalzine. It worked fairly well for my joints, I had some initial side effects of palpitations and high bp which sorted itself out within the first few months. It's certainly no worse than the other drugs you have tried and potentially not as damaging as biologics. I've tried most things available and this one was reasonably successful with less side effects than most others. Maybe worth a shot.

[Superfloozie in reply to Superfloozie]

Also, just as a by the by, a lot of people are very strong advocates for biologics and usually it's because they have worked really well for them and that is great. However, some people don't respond well and actually you need alternatives, some of the older transplant drugs of which tacrolimus is one have good effects of inflammatory disease and the dosage can be played with much more giving you potentially less side effects and less chemical invasion. Something like 25% of people won't get relief from biologics so always worth trying something less invasive first.

[Elaine777 in reply to Superfloozie]

Thank you Superfloozie, its so comforting to hear someone else's experience. Thanks for the extra information. 😊

[Superfloozie]

Pleasure. I hope whatever you decide to do is successful for you. If I have learnt one thing with this disease it's that you have to have patience 😀 Frustrating though that might be. I looked back on my consultants notes whilst on Tacrolimus and my inflammatory markers were pretty good, lower than they have been since and I'm now on a different biologic. I had tried biologics before tacrolimus but they really didn't work, hence going old skool😀 Good luck and fingers gently crossed.

[OctoberOrchid]

Hi Elaine. Did you ever end up taking tacrolimus and if so, how long did it take for you to see results?