Leflunomide stopped
dillydream
Posts: 75
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:
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:
0
Comments
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
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
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
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
julie
Hi Julie,
What is anti tnf treatment?
I will ask about that when i go for my appointment tomorrow.
julie