Changing drugs

[Pamak]

Hi, after saying about stopping Methatrexate I have been taken off it because of the side affects. However I may be starting Leflumide but can't see consultant until 22nd September so three weeks without drugs. Hopefully no more sickness and no flare up. What are others thoughts on Leflumide? Rheumatology nurse says not as good as Methatrexate but may be more suitable for me. Unfortunately I do react to most strong drugs so here's hoping. Got to be positive 😊

[Nettac]

It was better than sulfasalazine, but doesn't work that well for me. It may work brilliantly for you.

[AgedCrone]

When you are on Leflunomide make sure you watch your appetite. I lost 12 kgs ( down to 51 kgs) because I just wasn't hungry.....that was 18 months ago & I still haven't regained it all....but it's very effective for a lot of people so take it with an open mind.......but EAT!

You probably won't notice any difference in three weeks without Methotrexate....it takes quite a while to quit your system.

Good luck...hope Lfl is the drug for you.

[Pamak in reply to AgedCrone]

Thank you. I hope I do eat as I'm pretty sick at the moment and can't afford to lose anymore weight

[nomoreheels]

I'm on leflunomide alongside methotrexate. I started it 9 months ago & understand a 20% improvement is considered good, I guess that's around what I think I've had but there's still room for improvement! You'll probably have been told but it's recommended you have your BP checked regularly, mine is done when I have my drug monitoring bloods done. It can remain in your body for a long time, so, if necessary you're given a wash-out treatment to remove it more quickly than it would naturally if just stopping it.

I hope it helps you & you tolerate it better than MTX.

[Entero in reply to nomoreheels]

Hello both, I'm seeing my Rheumy tomorrow and expecting he'll do as he suggested initially and put me on leflunomide alongside Mtx as I haven't been great the last few weeks. The Mtx has made a big difference to the level of pain I have but I don't feel at all 'well' and I often wonder whether its the disease or the medication that's making me feel this way. Did the Leflunomide alongside the Mtx make you feel any more toxic or fatigued than Mtx alone nomoreheels? I know we're all different but I'll probably get as much out of your experience as I will from what the doctor tells me!

[nomoreheels in reply to Entero]

Sorry to hear you've not been feeling too good Entero. Well, as you rightly say we're all different but I've been on MTX so long my body doesn't react negatively to it, well I am & have always been a little tired the day after I inject & tend to pick at food but don't rate those too highly as side effects. The only negative response is if I go up to 20mg & then my liver objects, that I've no control over. The only way I think you'll determine if it's the MTX making you feel this way is if you either have a reduction or increase in dose. I think you inject don't you, so it's not likely to be route related. Or, maybe you're not replacing enough folate, in which case if there's room to you could ask for an increase in folic acid, see if that helps. I do feel unwell though when I've disease activity going on, I think that's pretty normal in which case maybe adding another DMARD will help, once it's up & working. Not much help I'm afraid, you never know though maybe your Rheumy will have a better answer for you. I can honestly say though I've had no side effects from LEF & hope the same for you. x

[Entero in reply to nomoreheels]

Thanks nomoreheels. I do inject and am on the full dosage of folic acid, both of which helped with early side effects. Mainly I just feel wiped out the day after injecting and quite low, both of which I'm guessing are related to the suppression function of the drug of course (wish I had a wry smile face I could add in here....) I was willing to put up with that for six pretty decent days a week, but more recently as I mentioned I've been feeling gradually worse. I've been seeing a cranial osteopath and today she said my body feels like its running on a flattened battery- pretty much feels that way to me too. I think you're probably right in suggesting it might be down to disease rather than the medication, so I guess I might be joining the leflunomide club very soon. Thanks so much for all your help x

[nomoreheels in reply to Entero]

You're welcome. I only hope things improve. x

[Lesley_1 in reply to Entero]

The lefluonemide suppresses the immune system so you will feel better and have a bit more energy.

I stopped the lefluonemide a year ago and I feel like I 'have nothing in reserve' running on empty all the time.

I have put a heap of weight on and I don't know why.

[Entero in reply to Lesley_1]

That's interesting, thank you. With everything else we have to deal with weight gain seems way down on the list of priorities but I'd be lying if I didn't admit I was slightly perked up by the prospect of weight loss associated with leflunomide 🙄

[Lesley_1 in reply to Entero]

The down side of lefluonemide is that it stays in your system for three weeks unlike methotrexate which lasts six days.

I started on lefluonemide a number of years ago and it DID help along with methotrexate and sulfasalazine both of which I have been taking for 28 years.

I stopped taking all Rheumatoid medications about two years ago when I ended up in hospital with Influenza virus, double pneumonia and infected asthma. I went down with it on friday evening and by Sunday evening I headed to hospital emergency as I was so breathless and was running a temperature of 107!

I was in isolation and it was only later that I understood how sick I was.

The dr said that they had a number of people like me in the past months who were vulnerable healthwise.

I was on methotrexate Friday morning 8.00am, lefluonemide daily and sulfasalazine daily plus lots of vitamins.

So I got sicker because all those drugs were suppressing my immune system.

I then started back on methotrexate and sulfasalazine a year ago but refused the lefluonemide. I am on xeljanz too but no biologics.

My disease is uncontrolled. I have had it a long time.

You ladies all should have your flu shots and. Pneumonia shots annually.

[Entero in reply to Lesley_1]

Wow, what a time you've had of it. I'm so sorry Lesley-1

[Lesley_1 in reply to Entero]

Please don't read that I am complaining. I have had it almost thirty years. That's the first time that happened. I had side effects with biologics.

I am trying to steer a middle road but I'm not sure if that's a mistake either.

But we don't always get all the information that we should. I didn't know lefluonemide lasted three weeks.

I stop taking methotrexate if I get sick to give my body and antibiotics a chance to work.

[nomoreheels in reply to Lesley_1]

Heck you went through the mill, pleased to hear you're now on Xeljanz. We are seeing a few starting it now, I hope you start seeing results.

I've always had the annual flu jab but it was only once I was starting LEF I was asked to have the PPV (which normally is a one off vaccination in the UK unless otherwise advised).

I was told that LEF can stay in the body up to a year, confirmed by the leaflet I was given. I should add I did ask if the strength depletes over that time & told yes but nevertheless it still remains. This was one of my concerns before I agreed to it & why I wanted a straight answer, it was only then explained there was a washout procedure if necessary, cholestyramine for 11 days.

[Gnarli in reply to Entero]

All the best for today. I hope the docs can find something to help.

J

[Entero in reply to Gnarli]

Thanks Gnarli. He's put me on Hydroxychloroquineand given me another shot of steroid. I really hesitated over the latter as it's the third I've had this year, but I'm starting a new job next month and in the end decided to go with it. Every appointment just seems to revolve around medication and nothing else - I couldn't help wondering If he doesn't get bored if that's all he has to offer? So, sitting here with an ice pack on my butt and promising my body it will be the last one I have.....🙄

[Gnarli in reply to Entero]

That's a b*ggeration isn't it! I've never had a steroid shot for RA -yet - and I'm not about to pester for one. Back on the tabs though. I hope it makes your life easier and you're up and raring to go at your new job. Hugs

Jan

[dwsurquhart]

I found that taking leflunomide caused me to spend many hours of the day on the loo. It can wreak havoc with your digestive system. Felt like pooping acid. Sorry for the visual, could not find any other words.

Plaquinil had the same effect on me.

I found sulfasalazine was better on my system however, did not work at keeping inflammation at bay. Only thing that worked with the dmards was prednisone.

You should know withing 4-6 weeks if a medication is working. If not working in that time tell the doctor to put you on something else.

If you end up on biologics, do a lot of research before going blindly with what the doctor says.

I started on Humira and had a very rare nasty side effect. Got off that in 6-8 weeks and withing 4 weeks nasty stuff went away.

Then started on Anakinra, itbis an interleukin 1 antoagonist receptor inhibitor. After 49 days of daiky injections i had no releif.

My CRP was extremely high at 159mg/litre of blood, supposed to be less than 3. That indicated my interleukin 6 levels were very high. So i started on Actemra (Tocilizumab) it brought my crp down to less than 0.2 mg/litre in around 6 weeks. It is still down to.less than 0.2 and I am 8 months on it. So far so good.

I hope all works out for you

Scott

[Entero]

Btw Pamak, thank you for posting about leflunamide and for bearing with my thread of questions in between. I hope you do ok in the next few weeks and please let us know how you get on. Best wishes, E.

[Damaged]

I am allergic to it. I spent the entire day vomiting. My Rheum called to say stop it.

I am currently having problems with abscess. My face is swollen but only at the site.! Very peculiar but then again, so am I lol

I hope you find something that works soon. I have been looking and listening to several doctors on the genetic forum. One, Dr is from the Uk , Doctor in the house. Very interesting forum on functional medicine , epigenetics and Nutrigenomics. You might want to consider an alternative approach if you , like me, cannot find a drug that works for you.

[Damaged]

His name is Dr Ragan Chatterjee