I am on leufluomide for my RA is anyone else on it, my ra is mostly in my wrists and hands, would like to talk about my ra with other people

[Bernie58]

as I seem to get a lot of rushed appointments with my docs, apart from the specialist appts at hospital who are very good.

[Tinwoman2]

Hi Bernie, I've taken leufluomide for 30 years now, but I take a lot of other things too: Methotrexate, hydroxychloroquine, Arava, prednisone, Pilocarpine, & a low dose aspirin. Also Alendronate, calcium, and Folic acid.

I never took just leflunomide alone. I did find out that I was on the wrong dose once, they said I was taking enough for a BIG man-so they halved the dose. I haven't had any contr-indications of leuflunomide.

Christine

[Karen77 in reply to Tinwoman2]

Isn't Arava the same thing as leflumonide?

[Hidden in reply to Karen77]

Hi Karen77,

yes it is the same,

Regards

Beverley (NRAS Helpline)

[Tinwoman2 in reply to Karen77]

Oops, you are correct.

[magglen]

I was put on Leflunomide after I stopped Methotrexate which gave me tummy cramps. I am also on Enbrel which has been the best of all... transformed my life. I now only take Leflunomide every other day as I wonder if I need it. My consultant would be happy for me to discontinue it altogether which I am considering as I believe it is heavy on the liver either on it's own or with the Enbrel. I suppose the less we take the less the liver has to deal with?

[julie_warwick]

I am on leflunomide and recently started cimzia . can't say there is any difference yet , but early days I suppose , don't you hate the waiting ? x

[jell]

When I was under Christchurch Hospital, Dorset, there was a monthly coffee morning and anyone could go, nurses would be there. Was great, would talk about our worries and concerns and the nurses would explain things clearly. Was great. Would even receive phone calls from a nurse.

Since I moved to Wiltshire I go to Bath RNHRD. There is a helpline to a nurse but she is obviously very busy. The GPs are a joke. All I ever got was a 15min lecture about how dangerous steroid jabs were. It took 2 weeks to get to that stage and I could barely walk without crying in pain. GP says contact hospital....The hospital says GP should deal with it. The GP says no, the hospital. When it came to it, the GPs stock was out of date. I had to collect from local chemist myself but because of confusion with accents, the dosage was wrong. I just don't bother now. I can't even be bothered to have the monthly blood tests and because the hospital is so far away from where i live, usually cancel my appointments.

[Hidden in reply to jell]

Hi jell,

so sorry to hear that you are having such a rough time at the moment. There are a couple of things that you can do if you feel that you are not getting the service that you should. You can speak to the Practice

Manager at your GP's surgery about your treatment. If you always see the same GP you can ask to see a different one. Maybe ask if there is a GP there who has a special interest in rheumatology.

If you are not happy with the service at the hospital you have the right to complain and I have put a link to the section on the NHS website where it tells you what your rights are and how to go about complaining:

nhs.uk/choiceinthenhs/right...

hope you manage to resolve your issues.

Regards

Beverley (NRAS Helpline)