Change in drug

[Piglet007]

Hello to all

I wondered if anyone could give me some words from changing drugs. I currently take hydroxy sulphasalazine methotrexate and amjevita biological. My team now want to stop the sulphasalazine and replace it with leflunomide as my inflammation CRP is on the rise again - I just hoped someone who was on this drug could give me some advice?. I’m delighted I won’t have to pop 4 sulphasalazine every day but looking at the info on leflunomide it looks quite daunting?

[KittyJ]

If you put that into the search box and filter for NRAS then all posts about it will come up 😊 Bear in mind all drugs will have a horrible list of possible side effects etc (even paracetamol ) but that doesn’t mean they will happen to you. Plenty of people take it and are fine on it.

[Hidden]

All drugs have side effects . I’ve never taken this one. I always say I will never know until I try. It might just be the one if not I stop and on to the next .x

[medway-lady]

I was on it until I got kidney failure NOTHING to do with LEF though. It was brilliant for many years. I never knew I had RA but it didn't work for 12/14 weeks and after about a week or so it made the RA in my hands and wrists worse a lot more painful ! But as advised I stuck with it and then one day woke up feeling great. If I could take it agin I would it just takes some time to work and the best way of describing is is that world got its colour back. From due gray and miserable to normal its well worth sticking with and giving it a good go. Best of luck.

[Mmrr]

I take a half dose leflunomide along with my JAK inhibitor, I've had no problems at all with it.

[Wyaatch in reply to Mmrr]

I was wondering what jak inhibitor as Xeljanz got flagged 2-3 months ago—& I just read in Pub Health that the other two Jaks got an FDA warning for the same thing—I was on Xeljanz & didn’t have major issues—& I asked the doc about using another Jak but she said they’re all in the same class —the doc asked me to study the Dmards and pick one but I’m kinda overwhelmed—I don’t know if they ask patients to choose as they don’t want to be sued?….I wrote that I prefer a teamwork approach if possible as I don’t think I can study all the drugs available in time—I’m without any & feel incapable of knowing what to do——I asked if there are any meds with less impact on the lungs—as I’m weak in that area—she said we don’t have info on that and we can’t tailor anything to particular people.Any advice?

[Mmrr in reply to Wyaatch]

I'm sorry to hear that and what a position to put a patient in...decide your own treatment....I've had no issues with toficinitib (Xeljanz) it's by far the best medication that I have bee on, but could not offer drug advice to anyone, that is the rheumatologist job.

[Wyaatch in reply to Mmrr]

Thanks for the sympathies—I agree it is their jobs to know the meds—& recommend I will meet with her nurse tomorrow & she is much more talkative & not defensive about questions— —but I find most of my RA docs do not try to see each patients variables ( weak lungs or asthma) Question: I got pneumonia while on MTX for first time. Previous RA Doc took me off MTX when I got pneumonia & after asking 3 times, at 3 diff visits, he finally confirmed it was likely due to MTXWITH NO follow up ideas—I have one tho—Since MTX is known as the most “gold star” RA treatment—has anyone went on to try MTX again—

( after pneumonia) maybe w/ MTX injections? I read that injections have fewer side effects—true for anyone? Thanks.

[Mmrr in reply to Wyaatch]

My understanding is that the less side effects by injection are less mouth ulcers, less nausea, les fatigue and so on. I don't think the injections necessarily reduce pneumonia and other infections.

[bpeal1]

I take sulphasalazine and leflunomide with no problems with either. Leflunomide is probably the drug which made the most difference when added.

[Piglet007 in reply to bpeal1]

Thanks to all for taking the time to respond, much appreciated 😊

[rounder]

I took it for a couple of years with far fewer side effects than methotrexate. Eventually moved on to abatacept because of a worsening of my RA. I always say that they have to list every possible side effect ever mentioned, but for the majority of users they don't happen. Whatever you move on to, I hope it works for you.

[Blodynhaul]

Hi Piglet007, I was on DMARDS for 20 years, until this year. MTX firstly for about 13 years , then Leflunamide for the last roughly 7 years. (Originally I'd been given suphasalazine and reacted horribly to it, so stopped quickly). I haven't taken a DMARD together with a Biologic, but my experience of Leflunamide on tis own was brilliant. I never had bad side effects like I did on MTX and the RA was controlled very well. It was only at the beginning of this year for some reason it stopped working, which was a great pity. (I started on Adalimumab 2 months ago and unfortunately it's not working yet). So, I would recommend Leflunamide following my experience anyway! Good Luck