I am soon to start LEFLUNOMIDE any tips or advice please

venita

Hi Everyone
I hope you are all keeping as well and as warm as you can in this horrible weather and A Happy New Year to you all.

I am to see my Rhummy in about 2 weeks to discuss starting Leflunomide and wondered if anyone has tips or advice with this med.

I have tried Methotrexate this caused liver problems.
I then tried ulphasalazine and this caused more problems.
I am unable to take anti inflamatories as I have reaction.

I think this maybe my last chance and if this does not work I don't know what to do. :?
Many Thanks

Venita

Wonkylegs

venita wrote:

Hi Everyone
I hope you are all keeping as well and as warm as you can in this horrible weather and A Happy New Year to you all.

I am to see my Rhummy in about 2 weeks to discuss starting Leflunomide and wondered if anyone has tips or advice with this med.

I have tried Methotrexate this caused liver problems.
I then tried ulphasalazine and this caused more problems.
I am unable to take anti inflamatories as I have reaction.

I think this maybe my last chance and if this does not work I don't know what to do. :?
Many Thanks

Venita

HI Venita,
I don't think I have responded to a post from you before - so can I say Welcome first !

sorry you have had a tough time with meds.
I know how frustrating it can be having to try different things before you find what is right for you. I had to try all sorts before I tried MTX, and although the tablets made me ill, the injections have worked until recently. After that they added Leflunomide into the mix. I now take Ibuprofen, MTX injections & daily leflunomide.

The main thing about the Leflunomide is that it stays in your system for a lot longer than other drugs, so there is not so much of a lurch should you have to miss taking it for a wile (in my experience anyway!). Also it is monitored as closely as if you were on MTX re blood tests, and also Blood pressure as in some people it can raise your BP - so best to keep a check on it.

However, I foudn that Leflunomide can be a little bit alarming at first, as it can really upset your stomach ..... I was warned and told that if I could put up with the problem for the first couple of weeks than I would probably get through it and be ok. This is what happened. It may help me that I also take co-codamol which tends to bung me up, so the two sort of cancel each other out

I would have thought that you had other options if the Leflunomide is not for you - there are all the anti-TNF and other biologic drugs as well ....... so don't give up!!!


hope that puts your mind at rest - if you want to ask anything else please do & I'll help if I can.

good luck!

suncatcher

I have been on it for 8 months and it has controled my ra brilliantly i feel so much better on it.
I agree totaly with what wonky has said about the drug. It does upset my tummy sometimes and now when i have to do a number 2 i have to go now straight away so it does change bowl motions. If i have runs i just take my pain killers which sorts that. I have had some high blood pressure readings but it is monitered well.
I dont think i have spoken to you before just to say welcome to site and i hope you find your experance of laflu rewarding i wish you future good health on it. Hope your mind is more at ease from joanne

englishrose

Hi, welcome to the site. It can be a great help.
Re Leflunomide, I have been on it for almost two months. I cannot say it has made a real difference but we are all so different. I also take MTX injections. One tip I found useful - Leflunomide can make you feel a bit sick (as well as giving you the runs) and I take mine at night just before goiong to bed. Ther theorory being that if you are asleep (hopefully) the nauesea should pass before morning. I have also had raised BP but they do monitor you very closely. Good luck - hope you do well on it.
Jane

venita wrote:

Hi Everyone

I hope you are all keeping as well and as warm as you can in this horrible weather and A Happy New Year to you all.

I am to see my Rhummy in about 2 weeks to discuss starting Leflunomide and wondered if anyone has tips or advice with this med.

I have tried Methotrexate this caused liver problems.
I then tried ulphasalazine and this caused more problems.
I am unable to take anti inflamatories as I have reaction.

I think this maybe my last chance and if this does not work I don't know what to do. :?
Many Thanks


I

Venita

lizzie7ne

Hi there, Leflunomide has helped me a lot.

I also take Methotrexate 25mg a week, that on its own did not
control the RA well enough, they added hydroxychloroquine and it still didnt help, they added a third med, sulphalazine and still it didnt work, so they cut out the other drugs and kept me on MTX and added Leflunomide and what a difference.

I also have high blood pressure which is normally controlled on BP meds but Leflunomide increased it a bit, so they reduced the dose of Leflunomide, however, because its done so well, they are now going to increase my BP meds so that I can increase the leflunomide to the orginal prescribed dosage.

i did get diarrhoea at first with Leflunomide and needed imodium but it settled down. I can honestly say Leflunomide has made a big difference to me. Everyone is different of course, but in my case the effect has been very positive.

Good luck

lizzie

suzster

my rheumy has said that i might start Leflunomide soon as i had lots of problems with mtx. so it's good to read what others have said about it, for warned is always good!
my rheumy appointment is on 20th, although i'm seeing the rheumy nurse so not sure if i can start it then or if i have to wait to see my rheumy, i hope nurse can sort it somehow! i've been off mtx for about 3 months now and i'm really suffering.
thanks for all the replies!
sue

venita

Hi thank you for the warm welcome and your replies.

They are all very informative, as you have said everyone of us is different and you just hope that starting a new medication will be the right one for you.

I will go to my Rhummy 22 Jan see what he says them we have already discussed this option and he has told me to read information he has given me and to have a think about it.

Many thanks again to you all and I will let you know how I get on.
Good luck to you Suzster you will be a couple of days ahead of me.

Venita

jenzie06

I was on Leflunomide for years after trying MXT, Sulfa, and a load of others I can't remember. I also can't tolerate anti-inflammatories.

I agree with the others that Lef can upset your stomach a bit and I took mine at night. The side effects were managable. I was also promised that I would lose some weight (didn't happen which was a shame!). It also dried my skin out a bit but my GP gave me some cream and it was sorted.

I also wanted to add that Lef is not the end of the road, after I stopped taking it I went on to anti-TNF (can't tolerate them either!!). The docs always have the next card up their sleeve and they don't tend to let on.

Plus there are always new drugs in the pipeline. As long as NICE give them the go ahead!

Good luck!

wallysatt

Hi venita,

I've been on leflunamide for several years now. I started on it as a replacement for methotrexate because I’d been on methotrexate for about 13 years and had just had enough of the sickness.

After about a year my rheumy thought that it was causing me to have a little bit of depression so I was taken off it. I was taking my finals at uni at the time and actually this as the cause of the tiredness and the sickness I was feeling not the drug. I went back on it a few months after finishing my degree in 2005 and don’t have any major problems with it. I have IBS which is one of the side effects but I’d rather have that than not take the drug and it’s not too much of a problem really.

Hope you get on well with it.

Take care.

Sally.

Wonkylegs

bringing this back up to the top for joanne

hope that helps

suzster

i've been to see the rheumy nurse today and i'm starting Leflunomide this evening, so i'll let you know how it goes!!
sue

venita

Hi Everyone

Many thanks to everyone for all your replies it is interesting to see how other people get on with this, I am a little apprehensive but I will have to try something as my joints are now swollen and sore most days now.
My jaw has been playing up as well the last few weeks with the cold weather, it is either all or nothing sometimes.

Good luck to everyone starting new meds and keep us updated.

Venita

suzster

i to have jaw ache, i thought i was getting an ear infection because my left ear was sore last night but this morning it seems to be my jaw not my ear. i actually managed to pull a muscle in my jaw a few months ago and it's been painful on and of since, it's a joy!
i wondered whether to do a sort of diary since i started the Leflunomide last night, what do you think? would that help anyone?
sue

venita

Hope you find this helpful

frogmorton

suzster wrote:

i to have jaw ache, i thought i was getting an ear infection because my left ear was sore last night but this morning it seems to be my jaw not my ear. i actually managed to pull a muscle in my jaw a few months ago and it's been painful on and of since, it's a joy!
i wondered whether to do a sort of diary since i started the Leflunomide last night, what do you think? would that help anyone?
sue

Sue
I reckon it would be a great idea for future people
I got face ache too
Obviously talking too much :roll:
Thought it was teeth/face/ear and finally jaw when it went click and stuck (nearly ) shut! Okish now dentist is talking about agumsheild for at night???
Love
Toni x