Leflunomide

[donnabrain]

Anyone here on this?My rheumatologist is thinking of adding it and I have been reading up on it.

It's a bit scary

[KittyJ]

Everything is a bit scary ( or a lot) if you read up on it. If you put that into the search box and filter for NRAS then all past posts regarding it will come up. There are lots here on it. 🤞🏻it’s the one for you.

[medway-lady]

Everyone is different but this medication put me into remission for years. It was brilliant. Yes it had side effects for a week or so then it just worked. I forgot I had RA. So you’ve nothing to loose have you? If it doesn’t work then you can move on. I took it alone and I’d take it again tomorrow but can’t because of CKD and it didn’t cause that. Good luck x

[donnabrain in reply to medway-lady]

Thank you

[ABwn in reply to medway-lady]

Hi medway-lady. May I ask what sort of side effects it had at the start? Have an appointment on Wednesday re medication. I now have osteoporosis as well. Would like to be prepared for any side effects, especially if they wear off after a week or so. I do appreciate that there are a number of different meds i could be put on. Many thanks.

[medway-lady in reply to ABwn]

Incredible pain in wrist. and shoulder and vaguely queasy for a couple of days. A loose tummy for same time. But the pain was dreadful, I could not move one shoulder and cutting up food and writing was really hard. Then I woke up one morning and the world seemed brighter, the pain had gone along with swelling and tummy issues. Never returned. It seemed as though the medication invaded the worst joints then settled. I don’t know about anyone else but it really worked for me.

[HeadInASpin]

hi I started on LEF (to go alongside MTX) at the end of March. I feel fine taking it and my hands in particular have shown a massive improvement. I am just waiting on the results of yesterday’s blood test to see if my liver is OK, as the previous test showed higher than normal readings. Main thing is that you have regular blood tests so that any potential problems are quickly discovered. If my tests are ok, I will certainly carry on with it because I feel the best I have in ages. If not then the wise ones on this forum have reassured me that there are lots of other drugs to go at!

As others have said, the potential side effects of all the drugs used to control this disease are very scary to read but they may not affect you. RA hit me very hard and has been hugely debilitating so I am just grateful that I’ve got some relief at the moment. If the blood results dictate that I can’t take my MTX or LEF I will be very disappointed but I understand that it can take a while to get the right mix.

Good luck, hope all goes well.

[donnabrain in reply to HeadInASpin]

Thank you

[lindyloo2018 in reply to HeadInASpin]

hi please could you tell me what dose mtx and LEF you are taking - my hands are bad as well.

many thanks

[sylvi]

I am on it with no side effects . All drugs are a risk it is just try it and see darling. xxx

[Kati66]

I came off metho as I found the side effects too debilitating and the rheumatologist put me on Leflunomide with hydroxychloroquine. It’s been so good to have meds that seem to be working for me and very little side effects. As others have said, try not to be too scared looking at the side effects, if a drug is working for your condition then that is so important. Even paracetamol and nurofen have a list of possible side effects!

Good luck xxx

[Oppenheimer123]

Agree that unfortunately you just have to try these things. I’m on 20mg subcutaneous MTX and LFL added in April 10mg x 4 weeks then increased to 20mg. Got bad sore throat, lips and ulcer so stopped taking as now on holiday and didn’t want to be risk it. Going to ‘rechallenge’ when back from holiday as don’t want to use up my options too quickly. I think this is the advice I would give you - persist as much as you can but I will switch to sulphazine if the side effects persist for too long. After all life has to go on 😂

[spartacus101]

Methotrexate made me vomit and so I was changed to leflunomide and hydroxychloroquine about eight months ago. I can now raise my hands above my head, get out of the bath, have started yoga again, as I can get off the floor, and feel a lot better. However the leflunomide initially gave 'onshore wind' a whole new meaning and I had diarrhoea. I was careful about where I was and what time I ate, particularly at midday. ( Maybe too much information?) This took weeks to settle down and the benefits may have taken longer to materialise as I had come off the methotrexate.

As other people have said, everyone is different and this could be what works for you. If it doesn't there are other options. Good luck.

[Matilda_1922]

it didn’t suit me but I know lots of people who are taking it with no problem

[Pigsearwawa]

Hello Donna brain, I have been on it for about 8 years in conjunction with Imraldi and I've been fine. It will be closely monitored, I have blood tests at the GP every two months and I see my consultant every nine months. When I started on Humira (now replaced by Imraldi) I stopped taking the Leflumonide but within weeks I quickly deteriorated so I went back on it and have really felt the benefit ever since. Good luck with your journey, once you establish the correct medication every thing will calm down.

[Kravitz]

I started taking Leflunomide in Jan ‘24. Though it has helped my R.A. pain, I think it is the cause of the peripheral neuropathy that started recently in my feet. I’m going to stop taking to see if the numbing, tingling, and tightness subside. Beware of this side effect.

[donnabrain in reply to Kravitz]

Thank you

[donnabrain]

Can I ask those of you taking it if you consume any alcohol at allThe leaflet the hospital gave me said no more than 4 units per week

I have now collected my prescription and says do not consume alcohol

Does this mean none at all?

Ever?

I do enjoy an occasional night out with live music

I'm happy to cut down, but don't want to be completely teetotal

[bpeal1]

I occasionally drink one glass but if I drink more than that my liver tests go too high.

I suggest stopping completely for a couple of weeks then try 1 glass per a week for a few weeks, if your liver enzymes behave themselves try adding an extra one and so on.

More and more places are selling no/low alcohol versions of beer and ciders. I’ve even found great non alcoholic gin and a good pimms substitute. The only thing I haven’t managed to find a good non-alcoholic version of is wine. The ones I’ve tried are way too sweet for me- I like a dry white wine.