Advise please!!!!

[TJB]

HI
Can anyone give some advice re Leflunomide?
I started it in November, and was told it would start to make a difference within 4 months, so far no relief, and my joints are screaming.    I am in so much pain all the time. Have got apppt to see Rhuemy nurse in March, phoned to ask her for advice but she wasnt happy to see me before then as its "too soon" to for the drug to be working yet. Feel so fed up at the mo. Can't take Co codamol, so i am taking the maximum dose of naproxen and paracetamol.
Has anyone taken this drug, and what are your experiences???
Thanks
Tracey

[smose]

Hya Tracey
Unfortunately with most of the dmards they like to give them 6months to take effect although the information for leflunomide does say it should start to take effect within 4-6 week.

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Have you noticed any improvement at all? Are you getting your blood results and have the inflamation markers come down at all?

I take leflunomide but in combination with MTX and it didn't do a great deal for me and was only left three months on it before they decided to move me onto anti tnfs. So unless there is evidence of some improvement I think you should ring up and stamp and scream until you get seen! At very least they should be trying to sort out your pain meds so you can function.

Have you tried tramadol?

[peter05]

sorry to hear your in so much pain, hope it eases soon, what do they say is the max dose for namproxen, I take namproxen and also take paracetmol codeine when the pain is bad.

[moanalot]

Hi, You need to get the pain sorted as a matter of urgency. If what they give you does not work, then squeal as much and as loud as you can. They somehow like to give the usual run of the mill in pain meds, but this is not a normal pain we are dealing with here. Ask your GP to change to something stronger and keep going back if they dont help.

Regarding the lefl, the pain control is not directly linked to these drugs, although the lefl should bring down the PA levels, you will still need pain relief which is seperate from the Lefl.

[debs]

I was lucky, I was put on Leflunomide 20mg when MTX and Sulpha made me ill. As I hadn't been on anything for a while after those I found that the Leflunomide started to help quite quickly. If it's not making any difference by your next appointment in March it would look like it's not going to work for you. What dosage are you on? I've been on Leflunomide for 2 years and my joints are screaming now too so my Rheumy is putting me on Humira too ( if I ever get my TB test appointment that is!)


Debs

[TJB]

Hi all and thanks for your suggestions.
Have been on 20mg since November, and havent noticed any difference in swelling, stiffness or tiredness. The only feedback i recieved re bloods is that my pottasium was high once, but to carry on with 2 weekly blood tests.
i am on the max dose for naproxen, 500mg twice a day.
cant tolerate codeine, and have taken tramadol, but didnt like the way it made me feel, i also drive so tramadols a no no
My appt is march 2nd, so will perservere til then, and ask about my other blood results and levels then.
Thanks again
Tracey

[smose]

I always ask for a copy of my blood results and have learnt what to look for so if there is something not quite right i can see it. Cos sometimes the gps miss stuff also make sure they are doing crp each time as this is how they measure inflamation so you can see if its dropping.

I take tramadol and still drive - I guess everyone is different and also i think after a while you don't get the spaced out feeling. There are other painkillers so its worth asking about these. Also have you tried a tens machine cos I find mine indespensible

[TJB]

Hi Smose
can't have a tens machine either- have got a dicky ticker!!!!
Shoot me now and put me out of my misery!!!!!!

Tracey

[philangst]

Not taken Leflunomide but take MTX (25mg) and sulfasalazine (for about 6 months) and just increased the dose. I think they usually like to give it 3 months+ before changing meds. After initial success on MTX, sulfasalazine hasn't really helped ad I feel I'm slowly getting worse so I think Etanercept(ENBREL) has been suggested next. Good luck with finding something which works and I hope you feel better soon

[smose]

Hi Smose
can't have a tens machine either- have got a dicky ticker!!!!
Shoot me now and put me out of my misery!!!!!!

Tracey

Gosh you are unlucky!