Leflunomide anyone?

Just starting this, just wondered how other folks have found it?

[RA22345]

hello. I transferred from mtx to leflunomide last year. Had no side effects and it seems to be doing the same job. I take hydrochloriquine as well. Seems to keep things at bay and on a separate topic, I think I am less sun sensitive now, so enjoyed the summer. Hope all goes well for you too.

[MickeyJoints]

Hi, I'm on about week 5 of Leflunomide, having stopped MTX (inj) after no benefit over 9 months. HCQ I still take, but appears to have no benefit either.

So far so good. Only 10mg daily and I'll be starting 20mg next month. It's certainly not made anything better and in fact, my symptoms are getting worse. I'm having trouble walking now, just over the last 4 weeks. Coincidence? Perhaps...

At least I'm not dreading injection day and the fall-out over the next day or so as with MTX. I'm sooo hoping it works.

I have noted others having used LEF, some report the disease getting worse over a week or two then waking up one day with no pain! I sure do hope so.

I'm following the programme with regular blood tests as there are some hazardous side effects (mainly blood related, like white cells dropping) to be wary of.

As ever, "you mileage may vary" and with RA it certainly will!

[ Small moan: How I hate this disease. I'm experiencing a reduction in mobility and quality of life. Oy vey. ]

[Hidden in reply to MickeyJoints]

Sorry to hear you still feel cruddy. I got much worse on sulfasalazine, so I'm hoping this drug will be better. T o be honest, after my last experience in sulfasalazine, I'm terrified of starting it!

Do hope you feel better soon.

[Mcdive40 in reply to MickeyJoints]

Hi there

I was on LEF before MTX and the side affects was very bad I had to come off it and go into MTX but I'm having problems on that with my blood counts they are all to high at the moment have to go ever week now to have them checked so if it don't come down think they will be taking me off them I don't want my liver damaged because of it

[Slife]

Hi. I have found it to be quite miraculous after failing on HCQ. I did have quite a few infections at the beginning but (fingers crossed) ok now. I have a huge reduction in fatigue and pain and an increase in hope! I do hope it works as well for you.

[linda-5502]

Hi I find this medi cation helps it does seem to take the edge of it. however I was without it for 5 days while yhe doctor and pharmacist argued it out as Leflunamide was not being made anymore but Arava was the same. The pharmacist wanted a NEW script the Doctor sad he did not!!! when the dr gave me a new script they did not have the med in so had to wait longer. Once I started taking it I felt better until today and I am flaring oh God what next. take xame I am sure you will find it helps xxx

[Pands]

Hi I am on week 9 now. Am up to 20mg day and only side effects are slightly dodgy stomach in the mornings and occasional headache first thing some days. But compared to MTX (which I felt I was poisoning myself with) I feel so much better/brighter. I can't tell you how well it helps manage my RA as there's no difference between MTX and Lef for me. I have been on Humira for 9yrs and so this is to run alongside - like the MTX did (but I was feeling so dreadful on the MTX I wanted to swap).

Good luck.

[medway-lady]

Great!

[Sophie17]

Like you nettieC I have been given this and as haven't taken any as the chemist hasn't any in stock. The drs have tried all the meds but they made me so ill, at present I just take steroids but these last few weeks have been painful. Also take vitamin D3 as well. Hopi n g to be a bit more mobile when things start working that's if chemist gets a move on. Can't walk far at present as pain is too much. I hope they work well for you good luck. Sophie17

[Lorin]

It did a good job of controlling my RA but drove my BP way up. I am sensitive to BP changes so you will probably be fine. Good luck.

[Hidden in reply to Lorin]

Oh dear Lorin, that's not good to hear! I have high blood pressure already! Hope you are ok now?

[Lorin in reply to Hidden]

I was 160/110 and even after stopping it took a few weeks to come back down. I am fine now. Seems like a lot of trial and error to find the right med. I am trying sulfasalazine with hydrochloroquine now. So far so good. Best of luck to you for that right combo.

[Amy_Lee]

Hi NettieC,

I started that in Jul 2015 after a year of mtx alone. My rheumy said my recovery was not fast enough hence she gave me leflunomide (Arava) to speed up the recovery process. They were/are okay to me. I am still having them until now.

[nomoreheels]

I'm not much help really Nettie because I've only been on it a week & only at 10mg but so far so good. SSZ wasn't for me either so let's hope LEF makes the difference for both of us. I was asked to have my bp & weight done at each bloods, every fortnight for 8 weeks then on to monthly. x