Hi. I'm new to this forum. Can anyone tell me about Lefluonamide side effects. Just been prescribed. Tried methotrexate but did not

[Megan2005]

Agree with me. Thanks.

[allanah]

Hi Megan

So good you found this site and I hope you get as much up port here as I got when I joined.

If you go onto the NRAS website nras,org.uk. there is a section on rheumatoid drugs which is very good.

I think different people have diffent effects and to list side effects is a bit worrying as loads of them are extremely rare.

Saying that personally mtx didn't suit me at all and I got put on ARava ( leflunomide) and it really helped. My blood tests have been fine, I have had no Side effects that I know off and it certainly reduced my swelling a lot.

I hope it really helps you and you feel the benefit soon.

Also just to let you know on the nras website is the helpline number, for me they are amazing and supportive and full of info.

So hope you improve soon and to hear you blog some more Axx

[Megan2005]

Thanks Allanah. Feel better about it now, still pretty scary though as I had such a bad experience with the Mx. Not starting the Lefluonamide until next week, as they want me to start on amatryptaline tonight for Fybromyalgia which I have been diagnosed with also. Fingers crossed. Xxx

[denvajade in reply to Megan2005]

hi Megan sorry to hear you had a bad experience with methotrexate, we don't need that too! I was wondering if you would mind sharing with us if you had any stomach issues? I have had months of tests scans, ultrasounds,bowel tests etc etc for big stomach issues and wondering if any one else has had this. wishing you well Trish

[Megan2005 in reply to denvajade]

Hi Trish . Sorry to hear of ur problems with Mx. Yes, I did have problems with my digestive system, I would be constipated for weeks then diarrhoea and sickness. I was constantly bloated and in pain but felt really hungry all the time _ it was weird. I felt it also affected me mentally I became very argumentative with people. Since coming off it , apart from the pain returning with a vengeance , I feel more like my old self (people have commented on this )' U need to push for something else. Good Luck. X

[denvajade in reply to Megan2005]

Thank you Megan I appreciate you answering, can I ask did you put on a lot of weight and how big was your stomach, I was like 9months pregnant with twins, now I look about 5months but still get sick eating most foods.cheers

[Megan2005 in reply to denvajade]

Hi Denvajade - yes my weight piled on - approximately just under 2 stones in 3 months, I too looked pregnant as it was all around my stomach area, nowhere else - couldn't see my waist. However for these 3 months I was injecting the methotrexate (the docs decided to take me off the oral Mx as it was making me so sick, and they said by injecting it would bypass the gut) - so don't know if it was because I was injecting directly into my stomach that made me pile the weight on. I could not tolerate a lot of foods either on the oral or injections - felt hungry and 'blown up' - but once I'd eaten was very sick.

[denvajade in reply to Megan2005]

thanks for your reply, I too changed from tablets to injections but I had already gained the weight on the tablets, been off injections about 6 weeks and getting smaller by the day. keep us informed as to how you go on new drug. by the way I no longer tolerate gluten or lactose, so altered my diet. cheers

[sparker]

Hi I have just failed on lefludamide in the last couple of months. It played havoc with my digestive system, lost hair and I also suffered from hives all over my body.

I have now failed all dmards and personally have decided to keep taking sulpha (not sure if it helps but minimal side effects) and not try anything else at the moment.

I fined the side effects of the drugs worse than the disease itself. Although I am in constant pain and constantly exhausted I have to try something else as the meds make me feel like giving up.

Hope you have better luck than me.

Steph

[Megan2005 in reply to sparker]

Hi Sparked. Thanks for ur reply. How long were u taking it? Did u lose a lot of hair, I did with the Mx and don't fancy losing any more. Good Luck. X

[lab-lover]

Hi, I was on leflunamide for a while, with no ill effect at all? Good luck

[Megan2005 in reply to lab-lover]

Thanks for the reply lab-lover. Fingers crossed, it works for me. X

[sparker]

Took it for about 6 months. I have to say it was worse than the methotrexate for me, and I ended up with quite bad hair loss. I am at the point where I an going to try non medication options diet, stress relief and exercise. I have been diagnosed now for 4 years and honestly feel worse with every medication I try. Good luck with your meds I know that they really help for some people x

[denvajade in reply to sparker]

hi sparker I too have gone of all my meds, the issues I had with them made life unbearable. keep us informed how you get on and I wish you well.

[sparker in reply to denvajade]

Hi I know some people think it's crazy but even my GP agrees that there has to be a balance. I am lucky I fly to greece on Sunday for at least a month to concentrate on me. I am going to give it my best shot. I will certainly keep you informed. Steph

[Hoping4GoodHealth]

Hi Megan,

I'm also new to this forum. I am currently taking Leflunomide . I do have digestive issues ( loose stools). I went off off this med. after a period of time, I got concerned that I needed to be on at least 1 med for RA, so I went back on it.

I previously, took Methotrexate , but that made my mouth break out in terrible, painful sores. I then went off that med.

I live in Florida and on Friday will be going to University of Fl. SHANDS Hospital to see a Rheumatologist. I'm hoping for good information & help with meds or anything that will get me on. A better path to good health !

( I also have Fibro) !

Good Luck in your decisions about your health. I will be happy to share after my visit on Friday.

[Megan2005 in reply to Hoping4GoodHealth]

Hi. Yes please do share. It's nice to talk and share problems. Wish u all the best luck for Friday. Please let me know how u go on. X

[Lunasea]

I too am new to this forum, but I have ran the complete gambit when it comes to RA meds. I take Lefluonamide along with many others. I've just quit taking Embrel as I kept getting inflamed lympnodes under my arms as the fact of having cancer again scares me. My RA doc says that the Embrel was the last thing I could try and if that didn't work there wasn't anything else for me to try. I have had no side effects from the Arava, aka. Lefluonamide but the one thing that helps me the most for the inflammation is predisone. The hardest thing for me was the fact that my RA doc doesn't believe in pain meds, he treats the disease not the symptoms, so I go to a pain specialist which has helped me tremendously and got me walking again. Now if could stop my deformities so I could wear shoes and bend my fingers I would be soooo happy, but until then I just keep finding different ways to get the normal everyday things done. All RA meds are bad for our bodies but it all comes down to a quality of life issue.

[rheumatoidymummy]

Hi there,

I added Leflunomide to my 'cocktail' of injectable MTX and Hydroxychloroquine just before Christmas and apart from a slight loss of appetite when I first started taking it (which unfortunately passed before all the Christmas goodies made an appearance!) I have had no real side effects at all. I seem to tolerate it very well in addition to the other things I take.

Hope it helps to hear a positive experience too.

Ju x

[Megan2005 in reply to rheumatoidymummy]

Hi rheumatoidmummy. Thanks for your reply. I'm not quite as apprehensive about taking them now after talking to people on this forum - it has made me feel more positive about it. Will let you know how I get on once I start taking them (Monday). Good Luck. xx