Since I’ve had a bit of a flare with joint issues, which started around the time the rash from being out in the sun showed up, the rhuemys I saw on Friday are starting me off on Leflunomide (added to the Mtx and tilcotil)… now, I know everyone’s experience is going to be different but I’m keen to hear “the good, the bad, and the downright ugly” of this drug… so, please, share any experience you have had with it.
I’m not expecting miracles with this med… but I think giving it a try can only be a good thing… either it will work, and I feel heaps better… or… I won’t get any benefit, or, won’t tolerate it and might be lucky enough to get offered a biologic to try… so either way, it has to be a good thing, right?
It was a registrar that wants me to try it, the rheumy didn’t look so happy about “throwing another poison” at me (his words)… My response to that was “something’s gotta give… I’ve had enough” lol
I’ve been on leflunomide for 5 or 6 years now. It helped more when I first started it, but that’s likely due to disease progression rather than the med failing. I’ve been on Enbrel for almost 4 years now with it. It did a really great job with my fatigue for a while in particular. When I started having trouble with diarrhea we just backed off on the dose for a month or two, and that problem never recurred.
You can also search the forums. Just type in leflunomide or arava in the search box.
Hi there @Stoney … thank you soo very much for your response… I have had a hunt through the forum, with brain fog I’m in at the moment it sorta all got a bit jumbled up in my head as wasn’t so easy to come to any conclusions about… me getting old and silly I guess
It’s a such a shame that PsA progressed passed Lef being able to keep it at bay for you (sorry to hear about that), but awesome to hear that you had a good response to it for so long, especially as it sounds like there wasn’t any unmanageable side effects for you.
You have given me hope, something I think I needed today , as for some reason I almost feel reluctant to try it (no rhyme nor reason for that though).
I have decided to get the Mtx bloods done before I start the Lef (a friend is taking me to town today to get bloods done and the prescription filled), just so we have a pre-Lef baseline (as the Mtx ones are overdue, just didn’t get around to getting them done )… and will decide later whether to start the Lef tonight or tomorrow morning (so at least if there are any nasty side effects it will still be in working hours if I need to call docs or anything lol).
Keep your fingers crossed that’s it’s plain sailing and quick relief… yeah… yeah… I know any relief most likely will take time
Thank you again!!
A safe and happy Christmas to you and all those you care about!!!
It’s odd sometimes why and how we sort take against certain drug suggestions. I did it totally with mxt. I sort of just knew it would hate me and that thought terrified me as well. I was right or possibly I made sure I was right. I’ve no idea which is the actual truth. I’m now marked down as intolerant to it and that’s just what it is, presently.
But despite my true phobia of throwing up, I gave sulfasalazine a shot and of course it didn’t make me throw up as it does lots of other people and moreover it’s working for me, presently. With just zilch side effects at all.
So go figure. Masses of luck with your kind of reluctant decision. I’ll be thinking of you.
As you say there’s no rhyme nor reason for much of it
Aww… thanks Poo_therapy for posting here… I’m pleased to hear the sulfasalazine is working for you and with no side effects… that has to be awesome!!! Unfortunately my system doesn’t tolerate any sulfa-based drugs, so Leflunomide is next on the list lol
Yep, we sure are odd characters sometimes… sometimes our crystal ball(s) scream at us, and that works well (like it did for you with the Mtx), but my crystal ball must be have been faulty from day one… if I get a feeling for something that will affect someone else, it’s usually bang on… if it’s for me, it often tells me a whole lot of crap … perhaps that’s just my wishful thinking, or unsubstantiated fears, interfering with my gut instinct
Aww… I don’t really think I have a phobia of throwing up as you do… but I’m one of those people who has difficulty doing so, so if I get a tummy upset I get almost catatonic, don’t throw up (usually), and to make it worse nor do I get usually get diarrhea either (mostly the opposite lol)… and it takes about 3 days in bed for me shake what would have been a 24 hour bug… it would just be soo much easier to throw the bug down the loo and get on with life
Anyway… I not long got in the door, with the new meds in hand, and have taken the first one of those tiny little white things… here’s hoping it doesn’t throw my bp out too much (it has been good the last couple of days) and does nothing more negative than some mild diarrhea (a little of that could be a could thing, might prove a way to get regular ) BUT does bash the fatigue and joint pain ASAP… then I’d be absolutely stoked!!!
Thanks for your good wishes!!
I’ll take this opportunity to wish you as safe and happy Christmas (for you and those you know)… and lets add in a pain free holiday for good measure too
Oh wow… now, that’s a first… I’m shocked and stunned… my new Rheumy (she is my Rheumy’s registrar), just phoned me at home… to check if I had got batteries for my little BP monitor… as she was a bit worried about adding in the Leflunomide given how my BP has been playing around for the last 6 months… yes, I had got batteries charged up and had checked it, and it’s down to pretty darn good But wow, that phone call has given me even more faith in her ability to get this lot all sorted out… perhaps being a registrar has her keen to prove herself in the field, and that’s just fine with me
Some doctors just have a ‘calling’. It’s so lovely then isn’t it? My rheumy is like that. Also the nurse who’s changing my leg wound bandage presently is similar.
@Poo_therapy… yep… it sure does make a difference!! I’m pleased you are finding that with your current rheumy and nurse… speaking of the nurse, how are you getting on with your leg wound? I seem to remember reading on a post somewhere that it wasn’t doing so good (sorry I didn’t have the time check in on you when I saw that) I’m sorry to hear that… I was hoping it would heal up a lot quicker than that!!!
After a certain point I was very keen to try every traditional DMARD I could get my hands on. That point was the one at which biologics had started to creep into the conversation and were being mentioned more & more frequently. I just knew I’d improved as much as I ever would on the traditional drugs and it was a case of ‘just give me the prescription and lets get this over with’.
I know there’s a million things wrong with that situation but, well, it’s the reality for many of us. Once you’ve had enough of it, it might be advisable to become a wee bit super-sensitive. A few blips in the blood pressure? A bit of weight loss, weight gain, nausea, feeling a bit ‘funny’? Log it all and report back to rheumy with suitable gravitas.
Hi Sybil… yep… I can understand that you weren’t having enough luck with the traditional DMARDS… but like most places, we have to fail two DMARDS to even get a look at biologics… When the head rheumy didn’t look so happy at the registrar’s suggestion of Leflunomide I let him (the rheumy) know that I’ve had enough, and something’s to give here
Yep, now I have access to the rheumy nurses phone number, and the registrar’s insistence to phone if anything goes amiss, I will do just that… I’m not putting up with any more than I have to again… I need to be able to function on some level and am willing to try whatever it takes to get to that point, if it is at all possible… even if that means risking some pretty heavy possible issues, I’ll take that risk in the hope that things won’t get that bad, and just maybe I might get some relief, or at least some energy… I’ve been far too long without either
Oh well… here’s hoping that proves to be the case… I’ve had an odd couple of days, lots that needed to get done before x-mas (bloods, picking up meds etc) and also gathering together a whole pile of paper work to ensure my already insufficient income isn’t reduced further (grrr… sometimes the benefit system here really sucks, I guess like everywhere), so with all that going on I would have to say stress levels have been almost maxed, and ended up having a little (fortunately private) melt-down this afternoon… It’s OK… I’m already starting to get over it (at least for the moment lol)… I doubt very much if it has anything to do with the meds, just life got a little on top of me (it happens every now and then).
Anyway the baseline bloods I had done yesterday have all come back pretty good, so any dramatic changes now I guess will be put down to the Leflunomide (or maybe not ).
As it takes time for Lef to build up in the system, I’m not expecting too much in the way of either relief or side effects to kick in straight up… so hoping for no dramas at least until the new year lol
Absolutely YES on the win win thing… either the lef works with few-no side affects, or I might get offered one of those new fandangled hotshot biologics everyone raves about so yep, it’s a win win… feeling pretty frustrated about the wait time to find out either way… I’ll get over it!!!
Leg wound happened on 22 September - so very nearly 3 months ago. Finally it’s presently looking like it will heal up, I’ll know more on Friday at the next bandage change. November it just spent most of its time infected and the rest of my skin very badly reacted to the adhesives in the bandages so we spent an age trying to find another bandage system that worked as having bandages go over my foot was a no no as it made me unable to walk. I’m now in weird compression stuff but only from ankle to knee. But at least it looks like it’s finally working!
Hang in there on the waiting - it’s incredibly tedious and sort of can bring you down too. I so know. So just strike days off the calendar as they go, even just doing that helps to see that time is passing!
I’m soo very pleased to hear that it seems to be improving… it’s been a drawn out thing for you… yep… standard type dressings are not always a good, or practical, idea, but with your new dressing we’ll have to start calling you “sexy leg” I’m glad to hear that it looks like it’s on the mend… Keeping fingers crossed for you for Friday!!!
Yep… tedious is one word for it I know you’ve had a rough time with everything, it kinda makes me feel bad feeling sorry for myself, my issues are no where near as bad as what you were going through with your pelvis etc
I think the fact that the ?flare that hit coinciding with the sun rash has me feeling I’ve taken a big step backwards (the 20mg Mtx had seemed to sorted the issues in my hands, but they are back now).
I’ve tried to be patient and positive during the necessary “wait and see” time… and will get that way again… just now I’m feeling like a spoiled little brat, wanting to throw my toys outta the cot not a common place for me to be… as I say, it’ll settle and I’ll put on some big girl pants and carry on… this is just a wee blip
But it’s always just relative isn’t it? And we never know which straw is the last straw until it happens. You’ve made me laugh though about the ‘big girl pants’. I think I’ve been looking for giant girl’s pants but sadly Amazon doesn’t seem to sell them!
Seriously blip or no blip - you really shouldn’t put yourself down in any of your reactions to trying to deal with PsA. It’s scary feeling like you’re taking a step back so temper tantrums and throwing toys out are perfectly normal reactions. Or at least they are for me … Hugs.
Pleased to give you a laugh today We all need any of those we can muster!!
Thank you for your support… you have made me smile too, I needed that tonight!!
Awww… I do my best to not play ‘spoiled brat’, as much as possible… and have a pretty warped sense of humor at times, which usually gets me through… every now and then little cracks appear though… ahh… well… try as I might… perfect just isn’t in my repertoire
@Poo_therapy, haha… I guess if we were perfect we couldn’t be considered human… so not being perfect is maybe a good thing after all The mind boggles at what perfect might look like I’m sure it would make us the MOST annoying and frustrating of people if we were… it’s all those little foibles we have that makes life interesting
)… and will decide later whether to start the Lef tonight or tomorrow morning (so at least if there are any nasty side effects it will still be in working hours if I need to call docs or anything lol).
But wow, that phone call has given me even more faith in her ability to get this lot all sorted out… perhaps being a registrar has her keen to prove herself in the field, and that’s just fine with me 
We all need any of those we can muster!!