Leflunomide and Increased Fatigue or just tge RA?

[Beelady]

Hi there, after not getting on with Mtx or Sulph, Ive been takibg Hydroxy since April and started Lef 3 weeks ago. Ive not noticed any real side effects but I do feel my fatigue is getting worse and worse again and wondering if this the Lef building up or simply tge RA fatigue. Its becoming quite debilitating. I seen to suffer from Fatigue well all the time really just some days better than other but I know tge side effects from Mtx made it worse. Just wondering if Lef is the same??

[sjhewitt42]

I have been put in Leflunomide for 2 months but the side effects have been dreadful.... to the point of working from home because I was so tired and felt like a constant hangover.. am waiting to see where they put me next. Have been in biologics as well for 5 years. Tell your Rhumatology dept it’s not suitable xxxx

[Beelady in reply to sjhewitt42]

Oh thats interesting but sounds awful. I guess thats how Im feeling. So drained and exhausted. Im a bit concerned as biologics are a bit of a ? for me and they would be next step. Are you persevering with Lef a bit longer or going to come off it?

[sjhewitt42 in reply to Beelady]

Hi no I have been taken off it as I was losing weight and feeling awful even at the reduced dose every other day. I am also on Abatercept infusion once a month but it doesn’t seem to be working so they are looking at Rituximab but I’m nervous of the side effects. Biologics are great when they work as I was on Cimzia for 5 years and felt great and as if RA had disappeared. I began to develop allergic reaction to it so had to come off. If you don’t feel too bad with the Lef then stick it out but biologics can be great if you find the “one”. xx Sarah

[AgedCrone in reply to Beelady]

Are you eating normally? I lost a ton of weight after taking LFL. & myrheumy took me off it after about three months.

I just had no appetite, but I didn't really notice until my clothes got loose. I was also tired, but I think I was so hopeful LFL would work I just told myself it would sort itself ....it didn't !

But don't worry about going on to a biologic....I went on RTX in 2016 & so far it is proving the best drug I have had in 20 years.

Talk to your rheumy nurse, I find they have a better take on how you are reacting to meds than the Rheumy.

[nablur in reply to AgedCrone]

I wouldn’t mind the weight loss tho....

[AgedCrone in reply to nablur]

I lost 15kgs in3 months...ended up weighing only 50kgs...not a pretty sight.

[Beelady in reply to nablur]

Nor me!

[helixhelix]

It's hard to tell after 3 weeks, as it could be the disease getting active causing the fatigue. Or it could be the drug, and that could wear off as you get used to it, or maybe it won't. With all the drugs I've tried it's taken a few weeks/months to get used to them.

I'd give it a little longer just in case it is a temporary side effect, but if it doesn't lift in a couple of weeks then do push for a change.

[Beelady in reply to helixhelix]

Thanks for responding always helpful advice. Yes I will stick with it as numerous possibilities but wondered whether increassd fatigue was one of them. I assume the drug is merely building up in my system at this point and then like you say I may adapt to it if it is indeed the medication. My RA is not 'under control' yet as have not coped with other meds so really hoping this will help. Biologics would be next step but would need to consider increased risks of...as have had cancer before.

[AgedCrone in reply to Beelady]

Don't worry about having had cancer.....I'd had breast cancer & was told there were two Biologics I could have....ended up on RTX,& all is still fine.

[charisma]

Hi beelady, I started leflunomide 20mg late May. One week later, infection meant stop for three weeks.

Been back on it since then and find the benefits began to kick in after six weeks. But also dizziness, headaches, very loose bowel and increasing feeling of lacking vitamin D, always needing sun.

I felt the effects of RA again before benefit of Leflunomide kicked in; that flu feeling which is so draining and makes me look pale and ill. And that ‘eating at my bones’ sensation in knuckles, wrists etc.

We just have to balance the benefits against the side effects.

As I have severe RA with obvious damage within a few months of diagnosis, it is a relief to be as well as I am now even though fatigue is a problem.

Hope you find you benefit soon.

[Beelady in reply to charisma]

Interested to know if the side effects built up foryou or whether they were tgere from beginning?

[charisma in reply to Beelady]

Tend to build up although some get less. It’s fatigue and feeling of lack of Vitamin D that builds to mood lowering and hibernation feeling. Same on Metoject before this.

Hope you get on okay with it though.

[medway-lady]

For me it took three months then I woke up and sounds daft but all better ! Give it at least three months before thinking its not working but do talk to RA team as it might be something else too.

[nablur]

Well that really is drastic!

[Beelady in reply to nablur]

?

[Beelady]

Oh sorry no I see...weight loss...50kg is very low. Must have been very worrying!