Hi all,
So I have been on MTX for about 8 months, and managed to reduce my pred to 5mg a day. However any stress and I flare badly. Rheumy had now prescribed Leflunomide. Has anyone tried it and can offer any comforting words? I've been looking at the packet for a week worrying about the side effects. Sadly the MTX was causing my liver to have some issues and apparently Leflunomide is slightly less toxic to the liver.
Thank you
Leflunomide has a predilection for the gut I believe! But some people take it with no trouble at all.
In a small pilot study it was claimed that 21 out of 23 patients went into remission from PMR - the other 2 had severe side effects and dropped out. I have a PMR friend in Scotland who had some effect with mtx but never felt really well so they tried leflunomide. She says she felt it "kick in" (not sure how long it took) and felt normal for the first time for years. Unfortunately she developed peripheral neuropathy with the leflunomide, including tremor, so had to stop - and was straight back to 15mg pred. She is now trying the lefunomide at half dose to see if that still causes the neuropathy and is sufficient for the PMR.
Amongst rheumies it seems to be a bit marmite-ish 
Some think mtx is the best thing ever, others think only leflunomide is worth it. You pays your money and you takes your choice! The only way to find out is to try.
gosh, that is quite encouraging.. apart from the nerve stuff!!
I'm going to start tonight!!...nappies at the ready. x
The nerve stuff was enough to put me off!! mtx was awful, I lasted 4 weeks. But I have no problems with pred and feel fine. Why mess with it I say.
I know and I do agree, but I want desperately to come off the steroids... i have put on so much weight. I'll give it a go, nothing ventured nothing gained, and all that stuff!
It's like any of these drugs , they all have their own set of side effects , advantages and sometimes quite severe drawbacks .
It does depend very much on the individual patient as to their response.
Personally , I feel , if you are not suffering too badly with the side effects from your original treatment , or have other health issues arising that mean you can't take them anymore, you are often just better sticking with it what has been working even if it is hard to be patient when you really want to get off steroids or something else.
You sound like you have been equally fortunate in your response to MTX , so this LEF may be alright too , but it's worth being aware that you put the body through quite alot with the drugs changes and that in itself can slow down your taper off other drugs too.
You do also slow down the speed that your body can respond to weight loss whenever a new drug is introduced and sometimes increase in weight dependent of the side effects associated with that medication ( unless the specific drug is known to have weight loss as a side effect).
Unless , I had put on a huge amount of weight , or had not managed to control my weight gain by lifestyle or diet changes , on any drug , if it was working successfully for me , and not causing more severe forms of side effect, I wouldn't , personally , choose to keep altering my medication and have to keep getting my body used to drug changes for weight gain reasons alone.
But , if it is seriously impacting on your mental health then it is would worth considering .
Hope that helps with your decision , it has to be a personal choice that you feel confident in and makes you happy for us all .
I have been on Leflunomide since 1st April this year 2019. Perhaps I am one of the "lucky ones", as I have had no ill effects apart from bleary eyes and some tiredness. I have to have regular blood checks and will be seeing my rheumy in August. I have had no painful episodes and apart from one month when I felt a bit under the weather (I was then on 6mg) I have felt pretty good.
Amazingly, he told me to reduce my preds by 1 mg a month and that when I get down to 1mg, at the end of that month I will stop everything completely. As you can imagine, this is such an incentive that I feel quite excited though a little incredulous that he could speak with such certainty.
Hmmm. Proof of the pudding is in the eating I fear!! But hope springs eternal.
good morning everyone and thank you for your informative and kind responses. I took the plunge last night, 20mg of Leflunomide and my 2.5mg pred. fingers crossed eh!
I joined slimming world two weeks ago and so far have lost 2lb's, not much but it is going in the right direction and of course its the beginning of the summer parties, dining out and long sunday BBQ's... in others word it's a bloody nightmare time to try and lose weight! and everyone has a new gin cocktail they want you to try!... anyway, I could just say no thanks 
enjoy your day everyone x
Please keep us updated with posts with your progress good , bad or in between .
All that information will help us all make informed decisions on what options we have and make it easier to help others when they ask questions later on .
I have fingers and toes crossed for you on the drug , and surviving the Summer of BBQ grub!😋😂😂😂
Take care and keep in touch x
I'll definitely write in and let everyone how it goes once I've magically got to the end of my medication. - that's assuming that I don't have any problem with Leflunomide in the mean time.
It will be good to hear the outcome good , but also if you have a few hiccups with it and it's takes a little longer too.
Write it in a post , and do updates if you can .All that information will help us all be more informed about what might work for us in the future , or what side effects that may come up if we try it.
Knowledge is power😋😘
I will definitely keep you posted !
A good idea. At the moment, it appears too good to be true as I have had none of the 'nasties' I used to experience when tapering.
Oh, it's one of those keep your finger over your lips and don't speak too soon moments.
I'm hoping it continues , let's face it if we keep hearing positive results it may give other people more options too , depending on their mix of conditions.
Do you also suffer from another form of arthritis as well?
I'll just remain optimistic. The only other problem I have is osteoporosis in the spine and hip - but not too serious. Many thanks for replying
If you haven't already seen them you could look through Herons posts for some links and her tips for help with the osteoporosis aches and bone health and they would make things better still.
Can't wait to hear more good news , take care x
I started leflunomide in February 2019 at half dose of 10mg. I was on 10mg pred. I’ve always had raised liver functions hence no MTX and why I started on half dose. My rheumy and I decided to start slowly and build up. She’s great and she encourages me to be involved in my treatment plan. I was keen to start something to help with ongoing knee issues. Rheumy reckons I do have PMR with something else happening in my knees hence the need to try something else. I have tolerated it well. Occasional stomach upset (urgent need for loo!) and interestingly my liver functions are now the best they’ve been in years! Knees still not completely controlled so have just increased leflunomide to 20mg early June. So far feel no different but left knee is niggling away this week. Perhaps it’s my own stupidity as played 18 holes of golf last week (first full round in a year, have played a few 9 and had been trying to build up gradually) and had my 60th birthday lunch with 25 family/friends at our house. A long, busy but fun day! Maybe my knee is now telling me to rest up 🤗
I’d recommend giving leflunomide a try. I have reduced easily to 8mg but with current niggles may remain here for few weeks. I’m taking it for the extra issues around my knees, not just to help my taper.
I was diagnosed March 2016, started on 20mg pred, have suffered a few flares and not found it easy to reduce. Good luck as it’s not an easy journey for most of us. I’d never be as positive as I am without the help and support on this forum.
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