Objective advice , Leflunomide

[Marionfromhappydays]

Sadly methotrexate isn't the drug for me, my 3rd bash with it at a reduced dose induced the migraines to return.

I've been told to stop taking it, the consultant has suggested Leflunomide; I don't want to take Leflunomide and I just wanted some feedback and if I am being a prat !

Things which deter me from Leflunomide:

Possible rise in blood pressure (have borderline high at the moment)

It takes a long time to clear from your body .

The last few months for me have been quite tough, weeks worth of full force migraines are no fun . I am anxious about it happening again, I guess no one can say if it will or won't but I know I've got to keep plodding on trying drugs because I can't function with my joints like this.

I had a really informative chat with a glorious lady on the NRAS helpline a few weeks ago after my first bought of migraines, she suggested asking for biologics as am quite sensitive to medications (medical history of reactions etc).

In my mind biologics are a step on from DMARDs, I have no aversion to taking them but should I work my way through the whole gambit of DMARDs before biologics (Dr might not even let me go on biologics so alot of this is me speaking out loud).

If I take Leflunomide and I don't get on with this I don't want to have to wait for it to be out my system before I can move on.

In your experience how much control do you have over your treatment? Are the Drs quite receptive to patients worries and preferred treatments ? I've always just said yes to the treatment plan.

I don't know if Leflunomide has been suggested because its good or because its cheap, maybe I'm overthinking things.

I know alot of my fears cannot be resolved until I actually try some drugs but I am so disappointed mtx didn't work. I feel like I'm knocking my head against the wall over and over. I guess I'm thinking biologics are the "good stuff" and I should exhaust the others in case one day i need an upgrade.

I've also been offered another depo injection, the first one I had didn't really help an awful lot with my joints, i just got a sore ass from the injection so I'm going to pass.

Apologies for the ramble, I've literally just had the email back from hospital and am a bit like a rabbit in the headlights. I was hoping they wouldn't suggest Leflunomide.

Any help would be gratefully welcomed

[allanah]

Personally, get the depo and I've been on Leflunamide for years with no problems. In fact if I miss any I feel the difference even though it stays in the body. I had high bo but the arava didn't affect mine . I can take a few " trials" to get the right combo . And I started biologics whilst on leflonamide .

[Marionfromhappydays in reply to allanah]

If you don't mind me asking had you taken a few other DMARDs before the Leflunomide?

Really good to hear it works for you, im never going to know am I unless I take it but I'm still in mourning for MTX not working !

Thanks for your reply

[allanah in reply to Marionfromhappydays]

I had mtx which same didnt work, the sulphasalasine which worked well for 9 months then leflonamide for about 6 years now. Plus steroid by injection at times and orally as needed and then about 8 years ago biologics added x

[Hidden]

Ooo 🤬. I’m sorry M .I think you have to fail 3 DMARDs before trying a Biologic. You are obviously sensitive to medication. If this was me I would email your consultant list your worries and ask could try Biologics. You never know. You have nothing to loose.

I don’t understand why we can’t see our consultants. I understand if we are stable and responding to medication but so many are not . Most of our nurses are lovely but they they are only the middle man and it’s not the same as looking a consultant in the eye and getting your message across. Poor nurses are in the firing line they don’t make the decisions.

[Marionfromhappydays in reply to Hidden]

Yeah I'm going to be completely honest with them with my reply.

I have got an appointment for the 10th Dec which I've had scheduled since September and they've changed it to a face to face one so 🤷‍♀️

I think they are all so busy, it is frustrating for everyone, bloody covid ! I'm just literally just working through a list of drugs to find the one aren't it .

Tha ks for your reply, how are you getting on ?

[allanah in reply to Marionfromhappydays]

It needs patience, I remember telling you that initially lol 😂but you try some different ones and see what works for you ! Something will, dont be too disheartened! I always wish there was a blood test to say take a or b and that's the one for you ....

[Marionfromhappydays in reply to allanah]

I think thats what i want, someone to say " this is the right one" but course it doesn't work like that 🙄😁

[Hidden in reply to Marionfromhappydays]

Bloody furious. I’m sending emails on repeat . Still not heard when I can start my new meds. 1st of September I had the go ahead. Thankfully off work ( shielding) but disease is becoming more active.. not bad but flashes off it . Suddenly I couldn’t walk up stairs yesterday gone today 🤷‍♀️hands stiff and slow yesterday gone today . Today sweats. Love the variety this disease throws at us🙄. At least it’s winter I much better in cooler weather. If it was summer I would be on my knees.

Go M !!! If we don’t push we will be forgotten about... we were here before Covid 😉x

[Marionfromhappydays in reply to Hidden]

Hope you get your medication soon x

[Boxerlady]

First of all, the normal thing about "we're all different" but here's my experience.

Re biologics, my rheumy nurse said that you had to fail 2 DMARDS to qualify so they were considering that when Methotrexate and Hydroxychloroquine (I started them both on day one) weren't doing the trick. As I wasn't doing too badly, they decided to add Sulphasalazine first and I was happy with that because, like you, I like the idea of biologics being "in the wings" in case the DMARDS fail for me in the future.

I've been very lucky in that I've had no long-lasting side effects from any medication so it's easier for me but I've just gone along with whatever my rheumy has suggested and tried not to overthink it. I would have accepted Leflunomide in the same way as Sulfasalazine, mainly because I didn't look at the possible pros and cons in advance. For the same reason, I didn't research biologics as I was waiting to see if they suggested that, which they didn't.

The only thing I refused was a third steroid injection because a) I wasn't struggling that much b) the second one hadn't had as much effect as the first one and c) (the real decider) they said that I'd have to self-isolate if I had it and although I thought that was over kill, I didn't fancy putting myself more at risk. However, I would have had it if I was feeling worse than I was.

I'd say that it's definitely worth a "proper" conversation with your rheumy or nurse before you decide; I wouldn't want to make that sort of decision over email. I was lucky in that I was called in to see the nurse and she explained at length what the consultant was considering and why, discussed the options with me and gave good reasons for her decision after she'd assessed my joints.

I'm really sorry to hear that Methotrexate hasn't worked out for you and hope that the next thing you try will be "the" one for you. 🤞💐

[Marionfromhappydays in reply to Boxerlady]

Thank you so much for your reply, I was told to research the drug on the versus arthritis website, sign of the times I guess.

I'm really so unsure, could do with a "proper" consolidation about things. I'm feeling like a bit of a guinea pig at the moment, par for the course I guess.

Thanks x

[Boxerlady in reply to Marionfromhappydays]

Of course you want a proper consultation - keep pushing for that. I'm very lucky that my clinic has been more available than some but I've also come to realise that I need to stand up for myself and ask for help; sadly, those who yell loudest are likely to get attention, particularly in these awful times.

[Kerensa21]

It's failure’ on 2 dmards in my area too. Understand your concerns about lef and methotrexate wasn’t for me either. All I can say is biologics have been a game changer for me & far less side effects. Hope you get some good advice off your team. It is a slow old process x

[Marionfromhappydays in reply to Kerensa21]

It is so slow 🐌

Thanks so much for your reply, its helped alot x

[Hidden]

Hello there

I'm hugely sensitive to medications unfortunately. That said, leflunomide caused the least side effects for me. Sadly didn't work though ☹️

[springcross]

Sorry it's not working for you M, that's a b----r. I hope whatever you (or the rheumies) decide next will be the one for you. xx

[Marionfromhappydays in reply to springcross]

Thanks Spring x

[charisma]

If you can tolerate oral Prednisolone, that’s an option.

Leflunomide will take up to three months to be effective.

I felt great on it short term, best I’d been since diagnosis, but it stopped working for me after less than six months. Others have had it for years and it still works well.

Unfortunately, it is trial and error. Some NHS Health Boards don’t allow biologics till three DMARD drugs have failed you.

Hoping you find the right way through for you, sooner rather than later. 💐

[Marionfromhappydays in reply to charisma]

Thanks for your reply.

Sadly I discovered that I can't take prednisolone right now as it causes high pressure in my eyes ! Honestly RA has caused a whole cascade of issues i never knew I had. I have to wait to have my eyes lazered which should solve the problem but currently due to covid the waiting list is about a year 🤔

It is an absolute suck it and see case isn't it as to which drug will work for people. I'm just having a dip and being a bit feeble, as from your own post its horrible feeling sick / nauseous all days isn't it .

Take care and I hope you feel better soon x

[charisma in reply to Marionfromhappydays]

That is a nuisance re your wait for laser eye treatments. I forgot to mention that when Leflunomide was stopped for me, it was just a wait of two weeks with no washout, and on to biologic drug. So that’s a year and five months now; the long half life can be two years but they know best...

Pre RA, I avoided all drugs, still do. But RA ones are a necessity and the only way offered to gain some relief. You will get there. xx

[Marionfromhappydays in reply to charisma]

Thank you x

[Ms-D]

Hi hun. I took it for a week but during that week i had heart palpitations and chest pains to the point had to call 111 for help. I was advised to stop asap. It doesnt mean it wont work for you but the side effects are horrendous. Not everyone has them though. Get advice from the rhuemy team. All the best my dear x

[Marionfromhappydays in reply to Ms-D]

That sounds absolutely horrendous, you must have been so scared.

Blimey x

[rounder]

It's scary stuff with these powerful drugs, but I'm sure they will find the right one for you eventually. If it helps I took hydroxychloroquine, then added in sulphasalazine, and then methotrexate as well. I didn't cope well with mtx, tried it in various doses and as pills then injections......stopped for a while and tried gold injections, back to mtx,........ Eventually abandoned the combination and took leflunomide successfully for 2 years with little in the way of side effects. Like you I worried about blood pressure but it didn't happen. Unfortunately they have to list all possible side effects, most people don't get most of them.

Eventually my RA wasn't controlled well enough by leflunomide and I moved to abatacept, it's been amazing for me, zero side effects and good symptom control. I had a gap of one month between finishing one and starting the next, and was given a pred injection to tide me over.

I guess what I would say to you is try not to panic, and maybe try not to read all the horror stories, there will be a treatment plan to help you, but it's often trial and error to get there.

[Marionfromhappydays in reply to rounder]

I think with every failed drug I get more anxious, I'm so desperate for something to work .

Really glad you found the one for you, there's one for me somewhere 🙏

[Hidden]

Marionfromhappydays i have been through the route you are going and it does pose lots of questions but for me I knew I had to keep ploughing on to try the DMARDS. However by the third drug I made sure I kept in touch with the team and was put forward quickly for biologics.

So you will probably have to do one more and I got in a blood pressure reading machine and logged my BP 3 times a day which helped them realise it was bad for me quickly. Evidence does help too.

I call it the plunge into the cold dip after a sauna you know you have to even though you don’t want to. Xx

[Marionfromhappydays in reply to Hidden]

I am pooping myself about trying it.

Doesn't help that I'm sat here with side effects of the mtx and my joints on fire. I'm preaching to the choir though as you know exactly what I'm going through.

Think you are a tad more brave than me though x

[Hidden]

Lef was the turning point for me after 16 weeks and a dose increase on mtx without being able to get off the pred at all. It did briefly bump my bp up at the start but that settled and I’ve had no real side effects since. Within a month (taking it alongside the mtx in my case) I was off the steroids and able to use my hands for the first time in almost 6 months. I wouldn’t be scared of trying it- what have you got to lose? If it does give you significant problems, the medics can give you a washout to get it out of your body sooner, but bear in mind that - as with all drugs - patient information leaflets list every side effect reported while someone is taking leflunomide, which is not the same thing as side effects actually *caused* by the leflunomide. There was a very interesting report on statins given for high cholesterol this week that categorically proves most of the side effects reported by patients and listed in the drug information for those are a nocebo effect: patients expect to have side effects from taking statins, so they have them even when given a placebo. These days I only look at the really serious side effects listed, the ones where it says speak to a doctor now if you get x/y/z, and ignore the rest unless I develop something new. Then I go back and see if it’s included in the list: if you properly read the PIL for paracetamol you could scare yourself silly.

[Marionfromhappydays in reply to Hidden]

Thanks Charlie, yeah I totally won't know until I try, I think I just feel a little fed up.

You know how it is, it's pants having uncontrolled flares all the time, yet I want a break from the side effects I've had from mtx but I want my joint pain to go. Hmmm basically I want what seems impossible, someone to say this drug will be the one for me !!

I guess you have missed out if you hadn't tried it and the same might be said for me. I've raised my concerns with my rhemy team, see what they say.

Appreciate your reply 👍

[Summerrain14]

I’m so sorry to hear that MTX is not the medication for you either lovely. Have you been offered biologics or just the Lef to try at the moment? So hard knowing what to do for the best with meds especially with how sensitive you are to then bless you. x

[Marionfromhappydays in reply to Summerrain14]

Just the lef at the moment, I have raised the possibility of biologics with them and am awaiting a reply but I just don't know what to do.

Biologics come with their own faff of storage etc and they seem a kind of step up 🤷‍♀️

The mtx really started working well on my joints so i really was putting all my money on the lower dose being the one for me, bit sad about it!

How are you getting on with mtx, has it started working, early days I expect; Hope it is helping x

[Tottie10]

If it helps at all, I have been on Leflunomide for over 10 years. I was put on biologics about 12 years ago with Mtx but had liver problems so they moved me to Leflunomide with excellent results. If you are worried about it staying in your system for ages, if needed they can flush it out over a short period of time. My dose of Leflunomide has been dramatically reduced as it made me neutrpaenic so have to still take prednisolone, but the Leflunomide really did and still does work for me. As many have said, the most effective combination of drugs for individuals is often trial and error.

Good luck.

[Marionfromhappydays in reply to Tottie10]

Thank you Tottie it's encouraging knowing it works well for people.

Definitely a trial and error process x