When I was prescribed the Leflunomide, my doc sort of downplayed it, saying it was just a mandated step on the road to the biologics. He thought i probably wouldn’t tolerate it. I wasn’t happy about the high cost of the biologics, but was resigned to anything that would help me!
However, I ended up having no problems with the Leflunomide, it helped me a lot, and the cost stayed within the limits of my drug plan! It’s been a couple of years now, I’m creeping towards age 65 when the government covers drugs free of charge, and I kind of like having the biologics “in my pocket” should things worsen!
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Hi Susan2… Thank you so much for letting me know… I’m really pleased to hear it has helped you… I did start the Lef. have had 3 days on it so far, too early to tell if it will help, I guess, but no nasty side effects, as yet… am keeping fingers crossed that it will be a positive experience 
Although the relief available from a biologic would be most welcome about now (assuming they work well for me), I’ve also read where the benefit from them seems to wear off fairly quickly for some folk, and I don’t like the idea of using up all of my options and being left with potentially many years ahead of me to live with untreatable disease (because I’d already tried all of the options).
Thanks again for your input!! Most appreciated!!
Have a safe and happy holiday season!!
@Susan2, a quick question, if I may… I am wondering if you remember how long it took for you start noticing any improvement from the Leflunomide? From what I read it takes about a month to build up in the system… but I haven’t been able to find yet how quickly it may show signs of improvement.
Why I ask is I’ve only taken 3 10mgs (over 3 days) and my spine seems to be feeling just a little better than it has been… I’m guessing that it’s probably coincidental and not the Lef… but… if the Lef is already showing signs of improvement I’d be really excited at the possibilities with it for me, my back has been a problem for 17 years, and has to date never responded to any medication.
Probably just wishful thinking on my part 
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I was told all three of the trad DMARDS that’s mxt, sulfasalazine and Lef can take at least a couple of months and indeed up to 6 months. However when I finally hit the right dose of sulfasalazine, it happened within a week or less. Are you on a loading dose of Lef as in you have to build it up or is the 10mgs the dose and you just repeat it daily?
Whatever @janson - isn’t it lovely your spine is just a little better?
Hi ya @Poo_therapy, yes, mostly from what I read it would suggest 3-6 months… but that it does take a month for the Lef to build up in your system, so I’d sort of though that if I got lucky I might start to notice minor improvement around that time.
There was no loading dose for me, partly for a fear of BP hitting the roof (it’s been doing funny things for a few months now), possibly too because of already being on Mtx (not sure if that makes any difference to starting with loading dose or not, but suspect it might)… also because of BP, I’ve just started off on 10mgs daily.
I definitely wasn’t expecting any quick improvement (and as I say it might just be coincidence or my wishful thinking lol)… but… just found a video online of a guy who 4 days in started to notice improvement… so… maybe… maybe not…
But… Oh YES… it has kinda left me feeling a little shocked and stunned… my back has been a problem most of my life, but since 2000 has only shuffled from moderate to “when do I moan and groan with this?” … but I noticed yesterday this kinda change in it, like a release/relief… it’s still far from great… but none-the-less it is awesome to note any change for the positive in it (also BP dropped considerably and suddenly yesterday, to what I would say would have been normal for me 20 years ago, definitely wasn’t expecting that!! lol)…
I guess only time will tell… hmmm… what will be most interesting will be if the Lef does improve the spine any, then I guess that rules out the chronic pain/osteo diagnoses I’ve had thrown at me for years 
then “shocked and stunned” would be an understatement
Trying not to get too excited… but 2018 could prove to be an interesting year indeed 
I’m sorry, butI really can’t remember. I was focused on the anticipated stomach issues! Feeling even a little bit better on your part should be celebrated, though. It’s a powerful drug and having no side effects is a great start. I know all too well how miserable the waiting for relief can be. If I were you, I’d allow myself to believe in any improvement, even a small one!
Merry Christmas!
Susan
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I was started on MTX, which did nothing. Then hydroxychloroquine was added, along with sulfasalazine. Did nothing. HCQ and SSZ discontinued. Leflunomide, a low 10mg, started.
The good: I didn’t notice any side effects
The bad: I didn’t notice any good effects
The downright ugly: went on a cruise, and went wild each evening with 1/2 glass of carefully-chosen table wine. On my return, my blood work showed that my liver was protesting. Loudly. I promised not to have even a sip of alcohol.
Then I went to a PsA specialist who said “the only answer is a biologic, and let’s hope it slows the damage down”. Mission accomplished, I’m still on a biologic three years later. I feel well, and I have no more damage than I had when I started.
It’s probably worth a try, but if it really doesn’t help, don’t waste your time. Move on.
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No worries at all @Susan2, just curious… awww, I can soo relate to the focusing on anticipated stomach issues… I had an out of town appt. yesterday and was sooo hoping stomach issues would hold off at least till after then… I had visions of having to get the health shuttle driver to stop at every public convenience along the way of the hour and a half each way drive, and then ending up late for my appt… or perhaps not even being able to “hang on” till the next public loo Oh… how very awkward and embarrassing that might have turned out to be I had to pull myself up, and put my rampant imagination in it’s place with a quick reminder that side effects were unlikely to kick in big time that quickly
I absolutely do believe there is a possibility the Lef could be the answer for me, and even though I know it’s not effective for everyone there’s no reason to believe that my system won’t do it’s usual and react in a completely odd way for the Lef and throw the PsA into complete remission… my body usually does react oddly to most things (often completely opposite to the expected “norm”)
I am trying desperately to keep my feet on the ground, though… I don’t do so well with prolonged roller coaster rides of hope and anticipation, ending up in disappointment and despair… absolutely will (and do) celebrate any improvement, anywhere, even if only short lived…
But… Oh… yes… that waiting does get to me at times… I can have an extraordinary level of patience for some things… but only some things
Thank you soo much for responding again, most appreciated!!
Thanks for the response @Seenie!!! Sorry to hear that the Lef didn’t do a lot for you, good to hear you weren’t plagued with nasty side effects… it’s awesome though that trialing it paved the way to getting a biologic. When I was handed the prescription I kinda thought “Oh, well, that’s another step closer to a biologic (and hopefully some real results)” with a rather ho-hum attitude about the Leflunomide, didn’t really expect it to do an awful lot of good to be honest. By the time I got home I started to feel a little reluctant to even try it, but, couldn’t really rationalise feeling like that.
It would be kinda awesome if the Lef does give significant improvement though, as apart from being able to enjoy some relief, it might convince the docs that this is definitely an inflammatory issue they are dealing with… although I do think they have “got that” now The rheumy exclaiming to his registrar that it was tenosynovitis he found in my hand and his comment “you ONLY get that in inflammatory arthritis, usually RA” would suggest he can no longer doubt it
Not being able to drink won’t be an issue for me… I rarely touch a drop anyways
I do agree about not wasting time with things that don’t work… I did that for long enough with the low 10mg dose of Mtx for about 6 months… I’ve had enough now (actually, I’d had enough years ago lol) and am soo looking forward to finding something that gives some decent and sustained relief… what ever that takes.
Thanks again for your input!! It’s great to get the whole realm of responses (even the null responses), helps to keep it all in balance
A safe and happy Christmas to you and yours!!!
I remember that roller coaster ride so well, and live in constant worry that I will, once again, plummet down a steep slope! But, I try to also remember that I have improved so, so much from my lowest point three years ago! I do credit the Leflunomide - although, as I have a long list of co-morbid “malfunctions”, I take a ridiculous handful of pills every day - and I figure the whole combo is fortuitous!
For me, the waiting is horrible because there is no anticipated end date! I, too, can be very patient, but have never been good with open-ended waiting; in a traffic jam, for a friend who habitually arrives late. The uncertainty of PSA makes me crazy!
Here’s to the slight improvement continuing every day! My rheumy led me to believe that a stomach reaction to the Leflunomide would be very quickly apparent, so I hope that non-reaction continues.
Susan
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Awww… thanks again Susan It’s always good to know I’m not the only who feels like this at times… you may be right about the combo of meds all working together for you!!
Here’s to a very long and continued remission/near remission for you!! I’ll even go as far as raising my cuppa for a long term/permanent remission for all with PsA (and any other long term progressive disease)!!!
It’s great to hear that Lef stomach reactions tend to happen very quickly… keeping fingers crossed that I missed out on that one
Cheers!!
Anyone who knows me knows I’m not the waiting type, and I so get that notion that waiting is actually doable only once you know you have an end date. In our world of trying drugs that end date is rarely told to you and anyway it’s pushed around too.
However I didn’t think sulfasalazine would work for me either and it helped just a bit from June to October but all that was complicated by spending June, July and August waiting for pelvic fractures to heal. However come October and increasing it, whoosh within a week I truly was feeling loads better. So I do hope @janson Lef just gets on and does something properly worthwhile for you too!
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@Poo_therapy, yes, it is an unpredictable realm we live in… it sure would be nice if someone could say “this is what will happen next, and this is when it will happen” unfortunately, that doesn’t happen with many things in life I guess.
I must have first logged in to LWPSA when things were really rough for you with your pelvis… it was a long drawn out process for you, and required an incredible amount of patience for you to get through it… my heart went out to you when I read your posts during that time… I am soo very thrilled to hear that the sulfasalazine has made such a difference for you… it’s awesome to hear that you are feeling so much better these days!!!
I keep faith that something will work for me… whether it be the Lef, or the next, or maybe the next med… I will keep trying until we find the right thing, I just know there is something out there… it may prove the Lef will be the one… or not… at least it will be one step closer to the “right thing” for me.
Today I think I have noticed a subtle shift in my mood too… kinda of a lighter spirit (that’s the best way I can describe it), despite being tired from a few busy days… again, maybe just wishful thinking… but, just maybe, it is the Lef, maybe already having been on the Mtx for a little over a year has meant that all that was needed was a little boost of the Lef… I have no idea… but… whatever has done it, I’m sure grateful for it!!! Here’s hoping it is the start of better to come
Thanks for your kind thoughts Poo!! They are most appreciated!! Wouldn’t it just be awesome if we could all genuinely get some successful treatment for 2018!!! 
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