NRAS
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Leflunomide

Hi I’ve had real bad headaches on Leflunomide went for my check up my blood pressure is normally 120/70 there about today it’s was 190/110 , as anyone else encounter these issues and if so what happened, this is about my 6th drug I’m not doing well on any of them,nurse ask me could I manage on steroid shots just Pickering peoepls brains , so sick of this horrible condition now feeling like a Ginny pig 🐷

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I had to stop leflunomide for that very reason. I have hypertension normally and it sent mine through the roof with horrendous headaches. It was the third medication I had tried as I also got side effect from sulfasalazine and methotrexate. Finally ended up on hydroxychloroquinine and Benepali injections but has taken me nearly 3 years to get there. I was also diagnosed with PMR in the middle of all of this and started on prednisolone.

Think you need to contact rheumy urgently if it stays high it puts you at risk. Hope you get it sorted sooner rather than later.

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I tried all them your on none worked still trying three years down the line .im happy you found your treatment just wish I found mine.

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Presumably nurse told you to stop taking the Leflunomide? If not the double check with your rheumy team.

Steroid shots are great in the short term, but in the long term you run the risk of osteoporosis and adrenal insufficiency. Low dose is better, but still not an ideal solution. I see you have also tried and failed on two biologics. But perhaps the newer ones like the JAK inhibitors might work for you? If the hospital don't propose anything other than steroids ask them why not.

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Hi Hel I’ve tried lots in such a small time nurse said I’m going through the list quickly which isn’t great nothing is working for me, it’s scary, yes he told me to stop but I stopped it myself I truly thought I was going to collapse I felt so weird, these drugs are so powerful I didn’t realise, I’m waiting to see the consultant I’m surviving on steroid shots but they only last maybe 4/6 weeks really I’m on my third one this year I struggle and struggle for week and weeks even months and I can feel the stiffness and pain kicking back in already.

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Jack inhibitors is there a link I can look at please?

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Thanks poem . I’m sure that link is mostly about the drugs I’ve tried and failed on .

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But the second link is about the new JAK inhibitors you were asking about. Have you tried ALL the biologics or biosimilars?

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Hi poem not all I’ve tried benepali just failed after about 10 weeks maybe,the abecepet made me sick with and headaches plus I’ve had about 5 oral types of meds thanks poem I will have a look. I think they may try rituximab that was discussed at my last meeting before they decided Leflunomide, which completely terrifies me as I can’t tolerate these drugs so how will I manage on ritx scared to say the least

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Poem so jak inhibitors are the ivi kind were we get it in a day case unit ? am I right rituximab and so on the man group of drugs ?

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On top of the traditional DMARDs I think you've tried Enbrel, an anti-TNF, and abatacept which is a T cell inhibitor? Rituximab is a B cell inhibitor taken by infusions, and there are also IL-6 drugs like Tocilizumab which are injections. JAK inhibitors are pills.

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I think it was mentioned on my visit before last about the Mabs I will,have to wait and see when I see dr thanks hel

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Definitely talk to your rheumy nurse.... increase in BP whilst on Leflunomide is not unusual though....but it does need investigating.

For what it's worth, I managed for 6 months on a couple of Depomedrone injections after having to come off Leflunomide ....I am fortunate they last up to 10 weeks for me.....so worth asking your nurse what type of steroid she is advising.

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Hi agedc I’m surviving kind of on steroid but they half work and half don’t of you get me isn’t this a horrible disease but thenkgod for steroids even if they don’t fully do there job at least I’m not crawling down the stairs of a morning .

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Yes Vonnie, any AI disease is horrid ,but you just have to get your head around it, & not let it take over your life.

If you can't manage something for a while.....just don't do it.....nobody ever died of dirty Windows or dust bunnies. If rest of family complain tell them they can do it.

After nearly 20 years on & off various pills & potions I now do what I can & long ago stopped fretting about stuff I can't do.

When you are on steroid jabs, relax & let them work.....then you might be in less pain so can cope better with stuff you feel you need to do.

You really can get to a place where life is worth living again, but just remember stressing over "stuff" is the number one No No!

Hope the steroid jabs help you.

AC

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Crone I’m not that bad we’re I’m like I can’t go on I will go on the steroid only work for a short period. I had one 4/6 weeks ago maybe and I can feel it creeping back in suppose they can just top me up mean while . Life goes on .

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Vonnie, high dose steroids for Vasculitis (still on them 3 years after diagnosis) gave me Osteoporosis. Even with RA, OA, Cancer etc. I didn't know what REAL pain was like until I got spinal fractures. :-(

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Oh no that’s awful I shouldn’t be complying you poor thing x

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I totally agree about the spinal fracture pain it's on a completely different level and like you it was a side effect of the prednisolone.

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Hi Vonnie

What mg are you taking? I’ve been on Lef for 5 weeks now. Started at 20mg/ reduced to 10mg and now on 10mg every other day. The side effects are awful.. like you headaches plus nausea and sense of taste has disappeared. Can you see if they can reduce dose?

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Hi Sj I was on 10mg I couldn’t tolerate it at all it was awful I stopped taking it 10days ago and my bp is still high I believe it can take months for it to get out your system so now I’ve got to have my bp monitored , goodluck to you if you can manage but I cannot the ast day I took it I truly believe something was about to happen to me collapse or something I seem intolerant to lots of drugs I hate this RD with a passion.

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I know how you feel and I’ve had same with mtx and sulph.. like I’ve got a constant hangover. I hate it too, I feel like I’m either moaning about being in pain or moaning about side effects from drugs. Can’t they do a wash out?

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I did ask about the washout sj but nurse told me it’s awful stuff but it’s a genuine moan I could imagine if it was him he would be go nuts he won’t even go the doctors he would be devasted if the shoe was on the other foot, I’m sure he thinks she is moaning again.blow him anyway.

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I don’t think anyone can truly understand how we feel unless you’re going through it. We are all so strong. Hope you feel better soon and you get sorted x

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Thanks sj thank god for this place at least you lot all get it.

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They'll stop it I would think. It's a common side effect. It was my fourth DMARD & my BP is always normal but it raised it. In fact my Rheumy requested it was taken at each fortnightly drug monitoring bloods & kept a close eye on me when I went in to monthly with it being normal otherwise. My BP settled eventually but I opted to come off it because I wasn't,t seeing any positive results plus it caused bilateral Carpal Tunnel Syndrome & peripheral neuropathy, confirmed by tests taken a few months apart.

With having had issues with quite a few meds & the option given as steroids (never good for your bones taken or administered longer term if it can be helped) I'd ask your team if you could be considered for one of the newer ones, the Jakus Kinase Inhibitor (JAK) group of meds. Currently there are a couple I think which have been approved for use for AI diseases, Xeljanz (tofacitinib) mims.co.uk/tofacitinib-new-... & Olumiant (baricitinib) mims.co.uk/baricitinib-oral... Either might be an option for you?

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Heels if these have Methotrexate in I can’t take that I tried that at the beginning it gave me abscess . Isn’t it just a huge pain when you can’t find one that suits.

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They don't have MTX in them Yvonne. They can be prescribed on their own (monotherapy) but in a similar way to anti-TNF's/biologics sometimes they work better combined with MTX (double therapy). As you've got good reason to not add in MTX (abscess) I would expect them to try you on monotherapy initially, so just the JAK tablet alone.

I empathise with your lot, generally I respond well to meds with no or few tolerable side effects but two DMARDs failed me.

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It’s just hard work heels I feel like jacking it in if only I could, anyway I will see the doctor but that usually take 4/6 weeks you know how slow they are even with a urgent one, I’m suffering with headaches now of evening only like clockwork, I’m ok in the day come evening bang here it is, I hope the gp doesn’t start prescribing me blood pressure tablets rhem nurse as revered me back to her to montiour my bp,I don’t need any more tablets I’m sick of them, I’m certain it’s the Leflunomide apparently it stays in your body for many months, I just seem to be getting no we’re slowly .

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It feels never ending at times doesn't it & your evening headache is unfortunately going to continue until your BP is better controlled. LEF does remain in the body a long while although I was quite surprised how quickly my neuropathic issues eased (a repeat nerve conduction test & EMG confirmed) then went once I'd stopped taking it. All you can do is be monitored, advised & then evaluate. You do need to keep your heart healthy though so think on would be my advice such as it is.

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I’m also getting tingling in my left leg at the back very strange , I can’t believe they think this is a good drug the ra nurse said to me he didn’t like this drug now I know why . Why would they give such a horrible drug I believe 1/2 years is that correct to fully get out of your body?

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I had to quit it for the same reasons and for the fact that I felt like I had the worst flu ever. I literally couldn’t get out of bed or get dressed. It was horrible but there are some it works well for which was mind blowing to me considering how badly it made me feel. Everyone is different even though we all experience many of the same symptoms and pain from this disease. I have literally been through everything you can take and the only thing I can tolerate is prednisone. I have my ups and downs and the lowest I was able to get down to is 7. I’m back to 10 because I’m flaring but I also have some decent runs. So much of it is mental challenge. Stress is definitely the worst enemy. I do what I can when I can and that has to be good enough. I wish you the very best ~

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I had the tingling too followed by muscle weakness. Definitely get a hold of your rhuemy and see if they can help you.

Best~

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Hi bunny thanks, I’m still up and positive but I can’t believe what this drug as done to my body I believe the washout is horrible but if it’s only 10 days or so I would rather manage that then lingering symptoms, I did ask the rhem nurses about it, they’ve booked me a urgent appointment I’m still waiting, see my gp about my bp this week I will have a word with her about the tingling as well, what a nasty drug tho, unbelievable rhem nurse told he didn’t like this drug one bit, I’ve been through so many now Methotrexate,tablets/injection, Hydroxychloroquine,sulphzalizine, benepali,abetecept and Leflunomide was the last one so many in a short period I asked about steroid nurse said would I survive on them . The shot tend to last 6 weeks at best maybe the tablets would suit me I’m going to suggest JAK therapy when I see dr maybe steroids if all else fails can’t stand all the side effect it’s ruining my life .

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I hear you, I remember thinking the exact same thing, leflunomide had just completely ravaged my body. I felt stupid for not figuring out it was the medication that was doing so much damage. I was out of town with my husband on business and I ended up in the ER just feeling worse than I had ever felt in my life including chemotherapy and radiation. The ER doc took one look at me and said stop taking the leflunomide now and see a rheumatologist immediately. I didn’t do the washout as my docs were worried about how well I’d fare but it took me about three months to start to feel better. I guess the bottom line is, something that stays in your system for so long just can’t be good for everyone. As I said I felt really dumb for not figuring it out but I was in such bad shape I don’t think I could have done simple addition let alone seperate a complex series of side effects from multiple autoimmune diseases.

Hang there Vonnie! I wish you the very best and good luck with the washout.

Best~

S

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Thanks bunny I feel better knowing others have had a similar experience but no appointment until the 18 of September and that’s suppose to be a urgent one, it doesn’t make any sense, I suppose I will be living on steroid injection until then.

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My first symptoms were in my feet, tingling which then went up to my knee, a fizzing then the only way I could describe it was every time I walked it was like when a tuning fork is struck, which the Neurologist thought was a good description. Worse though was the CT in both hands, so annoying & months of Occupational Therapy & splints limiting usage.

There is a wash-out procedure for LEF, if you want to ask about it Yvonne arthritisresearchuk.org/art...

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Heel I’m going to ask for the washout because I’m getting all crazy elements now it’s just getting worst as I go on this tingling creeps in and then fizzles out it’s very strange what a nasty drug tho I just don’t see how that out weighs the benefits with the crazy side effects horrible thing if I would have knew before hand I definetly wouldn’t have took it, heels how long before your symptoms left you?

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It's fine if it works & you don't have side effects but I admit I wasn't keen when I started it but you know how it is, it was my fourth & final DMARD & not at all sure I'd qualify for anti-TNF'S, not until I can get off my steroids at least. Thankfully all my issues have gone since stopping it, I suppose it was 3 or 4 months after halting it for the second set of neurological tests. My Rheumy still isn't convinced they were down to LEF, even 2 months after the trial & then repeating the neuro tests proved they were abating. We restocked, I said I didn't want to go back on it & thankfully an increase in my MTX isn't proving to be as problematic hepatically as it has been historically, I appreciate that's not an option for you though. If it helps at the time I posted about my problems, here healthunlocked.com/nras/pos...

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Heels can you buy this over the counter ?

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No, you'd have to see if your Rheumy will prescribe it for you I'm afraid. That said high BP is a severe enough side effect to warrant it don't you think?

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Heels I’m waiting appointment with my rhem doctor but they’ve referred me to my gp to monitor my bp.

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You could always ring your Rheumy nurse if you've not got a date for your Rheumy?

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Heels I don’t like the way they say it’s isnt down to the drug when we know quite well we were fine until taking it, they should listen to people more trust what our bodies are saying, hopefully things work out for you ASAP I know how frustrating it is.

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I know, it's so annoying. When I first started with CT & my fizzing legs my Rheumy wasn't happy me saying I didn't have them before starting LEF. Even when the second set of tests showed improvements she still said she wasn't sure it was the LEF, but if I preferred to stay off it I could but it would mean increasing my MTX dose which she knew I wasn't keen on. As it happens I've been OK to date so hopefully I'll be ok, until I try to taper of my steroids again.

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I hope your ok heels it’s so maddening that they think there always right that gets my back up. There not always right seem some dreadful things over my years but I will say no more, fingers crossed for you heels 👠

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