Leflunomide

debsmartin

Hi All

Just got back from my doctors appointment and it was half what I was expecting the methotrexate that I am on is not working enough so they are going to add in Leflunomide, I was just wondering if anyone was already on and if they thought it was any good also to find out what new side effects I can look forward to. On the plus side though have just had a steroid injection and I am already starting to feel less achey. So I suppose for every downside there's a plus.

debs

gemmapetken

hi
I was on lefludomide (SP??) for about 6 months

It was helpful to me and the only thing that had worked so far. Then i started terrible diarrhea which left me quite drained. I have been off it since the new year and only now is this subsiding! :oops: :oops:

I am now on sulpha!

Good luck with this, it may not affect you in the same way!!
G

granter

debsmartin wrote:

Hi All

Just got back from my doctors appointment and it was half what I was expecting the methotrexate that I am on is not working enough so they are going to add in Leflunomide, I was just wondering if anyone was already on and if they thought it was any good also to find out what new side effects I can look forward to. On the plus side though have just had a steroid injection and I am already starting to feel less achey. So I suppose for every downside there's a plus.

debs

hi debs

I was on it for a year and felt really well, despite a bit of nausea. Had to come off it after getting heart arrhythmias and was then offered anti-TNF but decided against it so they are trying me on leflunomide again, just 5mg every other day. I've been on it for about 2 weeks and feel a bit better. It's a great drug for some people and they reckon it's one of the safer ones. Hope it suits you. Keep us posted.
Barbara G

debsmartin

Thanks for your replies, my husband tells me off for trying to research things to much. I suppose everyone reacts different to tablets but I like to have a bit of info.

Cheers

Debs

granter

debsmartin wrote:

Thanks for your replies, my husband tells me off for trying to research things to much. I suppose everyone reacts different to tablets but I like to have a bit of info.

Cheers

Debs

Ah, I disagree with your husband. I don't think you can have too much information. Information helps you get control over the disease. That can't be bad, can it? Ignorance, or lack of information, produces a feeling of helplessness which in itself can make you feel worse.
All the best and keep asking!
Barbara G

jacquieweeks

debsmartin wrote:

Hi All

Just got back from my doctors appointment and it was half what I was expecting the methotrexate that I am on is not working enough so they are going to add in Leflunomide, I was just wondering if anyone was already on and if they thought it was any good also to find out what new side effects I can look forward to. On the plus side though have just had a steroid injection and I am already starting to feel less achey. So I suppose for every downside there's a plus.

debs

Have been on leflunomide for years now and works well. not too many side effects and do think ti is safer than a lot of others. good luck trying it.

shaggy

hi debs

I was on it for a year and felt really well, despite a bit of nausea. Had to come off it after getting heart arrhythmias and was then offered anti-TNF but decided against it so they are trying me on leflunomide again, just 5mg every other day. I've been on it for about 2 weeks and feel a bit better. It's a great drug for some people and they reckon it's one of the safer ones. Hope it suits you. Keep us posted.
Barbara G[/quote]

Hi I am now on leflunomide and like you have had nausea with it. I was interested when I read that you have had arrythmias, I have been getting a feeling of a "racing" heart, it just comes on all of a sudden and feels like its going to jump out of my chest. I spoke to rheumy nurse and she said that it wasn't a side effect, although I've only had it since starting this drug??! Can I ask if you had any symptoms similar? xx :?

roczko

Hi Debs

I take it along with sulfa and it does seem to be keeping my RA in check.

I am having some problems with kidney function but they're not sure if any of the drugs are the cause - it's still under investigation.

Try it and see, you might find it works for you and the regular blood test should alert the professionals to any problems.

Barbara G, I was interested to read what you said about arrhythmias. I have developed an irregular heartbeat (I also have leaky valves), wonder if there's a connection to leflunomide?

Patrick

jackie1955

granter wrote:

debsmartin wrote:

Thanks for your replies, my husband tells me off for trying to research things to much. I suppose everyone reacts different to tablets but I like to have a bit of info.

Cheers

Debs

Ah, I disagree with your husband. I don't think you can have too much information. Information helps you get control over the disease. That can't be bad, can it? Ignorance, or lack of information, produces a feeling of helplessness which in itself can make you feel worse.
All the best and keep asking!
Barbara G

When I was first told I needed to see a rheumy I was immediately on the 'net researching too! Oh boy, did I scare myself silly! My husband also got annoyed and told me to stop doing it as it was only making me worry more - and he was right.

My own thoughts on it now are - a little information is a good thing, but too much can cause you unnecessary worry about something which may or may not happen.


Jackie x