Anyone on Arava ? Does it have difficult side-effects?

[umamel]

[sallyeb]

I find the Arava much better than the mtx was on previously. For me I find it works much better and I don't feel as low. Obviously everyone is different, i certainly wouldn't be worried about going on it

Sally

[magglen]

Only side effect I wonder about is that, since I started it, I have to get up and PU several times a night. However stopped it for six months and no change so it may not have been that. Back on it. No other problems.... maybe less hair but that may be because I am getting old!

Go for it xx

[umamel in reply to magglen]

Magglen,

Thanks for your input here. I am not sure they will put me on it again,,, but it is in discussion. I was on it in 2010 for a very short period, they took me off and I had forgotten why. So these answers have helped me remember some of my old side effects in 2010;hair thinning was one of them.

Thanks for your help.

Umamel

[Hidden]

Hi, I agree with both the above comments, Arava much better than MTX, and PU several times a night. I did mention this to my rhumy nurse who did not think it was anything to worry about. I have noticed a pattern with the PU and that is it will not happen too much and then after a blip it will re-start, my thinking is the inflammation is full of water and it's a way of getting rid of it. On the plus side kilos have come down since starting treatment and people are beginning to notice. So carry on the nightly wake up calls if it means loosing the weight!

[magglen in reply to Hidden]

I do not have a weight problem...in fact I am a bit underweight. So don't need to lose any more at night! i go just before I am ready to drop off and then am up only an hour later with full bladder. Really upsets me to be woken from a deep sleep. Sometimes hard to get back to sleep again so have a radio by my bed with a snooze button to switch if off in 20 mins. Then I am up again 2hriy with same routine.

Consultant suggested a visit to an urologist but haven't heard from them yet. Don't know what they will say but don't want to go into any invasive treament or more medication. Suppose i must battle on. Just a problem if I want to stay o/n where I don't have my own bathroom. Am sharing with a friend when I go on holiday next Spring and just hope I don't disturb her.... she knows my problem of course.

[Dogrose]

I took it for about 9 months, first 10mg then 20mg. The 10mg wasn't really noticeable but the 20mg left me feeling a bit generally rough, hard to explain, sort of headchey/sicky/tired. I would often get bad runs, sometimes it seemed to have partly digested blood in it. I completely lost my appetite but didn't lose much weight as sometimes all I could stomach was ice cream. It sent my blood pressure through the roof and wasn't really working so my rheumy took me off it.

[umamel in reply to Dogrose]

Dogrose,

Ooops, it sent your blood pressure through the roof. That is a major issue. That it interesting. I really need to keep my blood pressure under-control. I will keep this in mind. Thanks for your input.

Umamel.

[Dogrose in reply to umamel]

I bought a home blood pressure monitoring unit so I could check on my blood pressure when I was relaxed at home, it is usually worse at the clinic from the stress of being there!

[SarahKate-NRAS]

HI Umamel

You can find out a bit more about some of the common potential side effects of Arava (leflunomide) in our article all about the drug: nras.org.uk/about_rheumatoi...

There is also quite a lot of useful information on the Arthritis Research UK (ARUK) website: arthritisresearchuk.org/art...

It is always important to remember to weigh up the potential benefits that could be gained from a drug alongside the potential side effects. I hope you get on well with the Arava.

Kind regards

Sarah Kate

NRAS

[umamel in reply to SarahKate-NRAS]

Sarah Kate,

Thanks for your input here. I have read what is on the site. That is helpful. Interesting quote here:

"There is also some evidence that leflunomide can be combined with biologics in place of methotrexate, though there is some doubt about its relative benefit in this situation."

This is what they want to do in my case. I wonder about the "some doubt"

I was on Arava for a short time in 2010 and taken off. But it is not clear why I was taken off. So they (my rheumy) want to try it again. I wanted to try to remember some of my side effects during that short time, and these answers from the other members triggered my memory, which is very helpful.

this is an active group, which is also helpful.

thanks for your input here.

Umamel

[heatherp]

I was on it for about 8 months last year - worked really well for my RA, however had to drop from 20mgs a day to 10mgs after about 3 months as it didn't agree with my stomach! Felt constantly unsettled and like others above lost loads of weight (which actually has never come back on even with constant doses of prednisolone since then!). Also lost my appetite completely and had no interest in food at all! Did make my hair thinner, but I do have a lot of hair, so wasn't as noticeable as it could have been (just me noticing all the hair around the house!)....however as with all these things these drugs work differently with different people, and as I said it worked really well on my RA!

[umamel in reply to heatherp]

Heatherp,

Thanks for this answer. I was actually on it for a short period in 2010, but had forgotten my problems with it. After reading your entry it all came back to me clearly. It didn't agree with my stomach, and I lost my appetite, with no interest in food. I knew I had stopped for a reason, but had forgotten, this was it. Thanks for replying. This was very helpful to me.

Umamel.

[Josie2]

Was ok on 10mg but still getting flare ups so upped to 20mg, no hair loss but aching muscles, no appetite, bad stomach pains and still had 2 flare ups!

Think im going to come off them as they still dont seem to be working!

Hope you get sorted.

Xxx

[umamel in reply to Josie2]

Josie2,

Thanks for your reply. This seems to be an active group. I am happy I found it. Well, it clearly did not to the trick for you. Hope you get another drug to sort you out as well. I asked the question to trigger my memory and it worked... no appetite, stomach issues were some of my side effects as well, though I was only on it for a short period. They want to re-try it since it was not documented why I went off.

Thanks for your input.

Umamel.

[rosieh]

My O/h has been on Arava years and the effect when he first took it were miraculous, things have settled down and he has no side effects at all.But one thing that was raised with us was always stop it (with medical advice) before surgery.