Leflunomide stopped

dillydream

Hi all,
I have PA which affects nearly all of my joints, I also have OA in my spine and neck and to cut a long story short i have been unable to tolerate Methotrexate and now my Leflunomide has had to be stopped. Both meds gave me abdominal pain, nausea,extremely bad head, overwhelming tiredness to the point where i could only sit in the chair and do nothing and generally made me feel like a zombie.
I also (unsurprisingly ) didn`t feel any benefit pain wise, from taking either.
At present i`m only taking pain killers and anti`inflammatories and although i feel more like myself, i know i need something else in order to damp down this b horrible disease. After 14 months of this i am still in the same position and really fed up.
I`ve just been advised that my DLA application which had been refused and gone to appeal has now been changed in my favour and i have got the lowest care component and nothing for mobility. I`m afraid to appeal again in case they take it off me.
I am seeing the R Consultant on Tuesday and she is going to tell me where i go from here. Has anyone any advice about what questions i should be asking re treatment ? :idea:

elnafinn

Hi Dilly

I am sorry to read that meds are not treating you kindly and also not really providing any benefit either. I just wanted to wish you well with your appointment on Tuesday. I am not sure what questions you could ask until you have heard what the rheumi has to say and what she is recommending. I do hope that you get on with and trust her and that you are able to work as a team.

I hope others answer your posting and can help you more.

Luv
Elna x

Wonkylegs

HI Dillly,

so sorry to hear that the meds are giving you a hard time.

have you thought of contacting the AC helpline for advice for your appointment? they are good at talking through things & I am sure that it would help.

good luck
hugs
WOnky

dillydream

Thanks for your replies to my post.
No! i hadn`t thought of contacting AC i`ll look into that. My R Consultant is very supportive but there isn`t enough of her to go round lol so i only get to see her every seven months or so. I see her Nurse Practitioner more often.
I just want to be on something that doesn`t make me feel so ill i can`t function, which is what has happened so far. The pain is bad enough without that on top. I`m weepy today and trying to put on a brave face because my husband worries so much about me.
Anyway, we`ll see what happens tomorrow.
Thanks again,
Dilly

snowball

hi Dilly sorry you're feeling down i have r/a and take mtx on a low dose as it makes me ill i also take leflunomide and anti tnf treatment i wonder if you could try anti tnf not sure as i only no of people with my condition who take it. Hope you get something sorted.
julie

dillydream

snowball wrote:

hi Dilly sorry you're feeling down i have r/a and take mtx on a low dose as it makes me ill i also take leflunomide and anti tnf treatment i wonder if you could try anti tnf not sure as i only no of people with my condition who take it. Hope you get something sorted.
julie

Hi Julie,
What is anti tnf treatment?

snowball

dillydream wrote:

snowball wrote:

hi Dilly sorry you're feeling down i have r/a and take mtx on a low dose as it makes me ill i also take leflunomide and anti tnf treatment i wonder if you could try anti tnf not sure as i only no of people with my condition who take it. Hope you get something sorted.
julie

Hi Julie,
What is anti tnf treatment?

TNF are biological modifiers they block the action of a chemical called tumor necrosis factor i've just copied this from my book i don't think they use them o/a hope this helps.

dillydream

snowball wrote:

dillydream wrote:

snowball wrote:

hi Dilly sorry you're feeling down i have r/a and take mtx on a low dose as it makes me ill i also take leflunomide and anti tnf treatment i wonder if you could try anti tnf not sure as i only no of people with my condition who take it. Hope you get something sorted.
julie

Hi Julie,
What is anti tnf treatment?

TNF are biological modifiers they block the action of a chemical called tumor necrosis factor i've just copied this from my book i don't think they use them o/a hope this helps.

Thanks Julie,
I will ask about that when i go for my appointment tomorrow.

snowball

Good luck Dilly let me know how you get on
julie