|
|
Rank: Advanced Member  Groups: Registered
Joined: 1/3/2010 Posts: 44 Location: Horsham, West Sussex
|
Hello All
I've been on MXT for over 2 years and Leflunomide from July this year as well until a couple of weeks ago. I had to drop the Leflunomide because my BP shot up. The RA is definitely flaring more again and I've felt REALLY nauseous since taking the MXT yesterday which is the same as last week when I took it.
Firstly, has anyone got any experiences of 'withdrawing' from Leflunomide?
Secondly, I'm wondering if this increased reaction to the MXT (nausea) is a sign that I'm not going to tolerate that any more either?
As with anything else to do with RA, it feels like one step forwards and two back. It's also reminded me how bad it used to be before I went onto the combination of the 2 drugs and how short my memory is. Any comments welcome!
Thanks
Kathryn
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
|
Hi Kathryn
Sorry I can't help with the lefluonomide probs, but hope I can offer some help re MTX.
I noticed increased levels of sickness after a few years when my dose was increased. Firstly, has your GP prescribed a stomach protector? If not, do ask as there are a good selection out there.
We stopped the tablets and I now inject the MTX weekly. This way, it goes straight into the bloodstream and bypasses the stomach, so no more sickness. It's usually easy to switch if you are having problems. I have also noticed that I now manage on a slightly lower dose, as the injectable isn't excreted through the kidneys as the tablets are.
Hope this helps
Love Jeanxx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
|
Hi Kathryn - I was on MTX which was ineffective, then Leflunomide which was great but I had to stop because of high BP. I'm now back on 20mg MTX and half dose(10mg) of Leflunomide whilst waiting to start anti-TNF.
I know what you mean about the back and forwards bit! I seem to be tolerating 10mg of L after a break of 6 weeks so fingers crossed I can stay on it till the Embrel starts. Hope you are feeling better soon . Maybe try going back on a lower dose after a break and see if it works for you? XX Ailsa
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
|
Hi Kathryn, Ive been on mx for over a year now and have recently had to stop the dose and gradually increase because of raised AST liver. I started taking leflunomide 10mg in August and found I was a bit nauseous to start but that settled. In fact Ive found the mx makes me feel worse, I take it on a Thursday and space the dose out during the day but still feel sick at night and a bit "iffy" on a Friday. Know exactly what you mean, its like a snakes and ladders game isnt it?!!
Heather xxxx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 1/3/2010 Posts: 44 Location: Horsham, West Sussex
|
Thank you all for your replies. Well, this is now the second day after my usual MTX dose (25mg) and still feeling a bit horrid. It's like morning sickness! Maybe I will have to go over to injections eventually. I'm due to go back to the rheumatologist at the end of January. I understand that I'm running out of options for combinations with MTX (have already tried Sulfasalazine) but at the moment, he says that we have to wait for the Leflunomide to work its way out of my system.
Jean, I'm already on Lansoprazole for my stomach (a long-standing complaint, that one!) but thanks for reminding me that I should probably double up the dose on that until I feel more normal.
Isn't this forum great? I expect I must drive my husband mad with all the moaning so it's nice to have a whinge somewhere else!
Thanks again.
Kathryn
xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
|
HI Kathryn
Hope things settle down for you soon, I still get nausea even though Im on methotrexate injections. but my GP has put me on domperidone tabs which really help. Might be worth trying.. Take care xx
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
|
Hi I have just come back to the forum and came to this thread. I am currently waiting for new meds (really long story) and I am still coming off leflunamide after increasing to 20mg which made me have headaches, strangely have bruising, tiredness an the list goes on. I am now waiting to go on anti tnf drugs but being messed around a bit and very tearful about the whole mess. I am still taking hydroxc but not enough and no idea if I can or should just come off it and wait to see what will be done. I was going to ask if anyone else is at a loss with rhematology at the mo but I think i know the answer on the whole. I have just been told that They have no idea when I will be offered an app!!!!!!!!!! grrrrrr. Anyway rant over I hope all goes well for those on any meds regarding this nasty disease. dawn xx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
|
Hi Kathryn, I had to come off leflunomide as it played havoc with my liver, and made me really ill. It also gave me horrible sweats and bad headaches, so I was quite pleased not to have to take it any more. With all the drugs it is a case of trial and error, which is extremely frustrating when you want something not only to work, but to work quickly. My GP told me the first 18 months would be the worst - he actually kept me sane while I was trying various DMARDs and combinations of DMARDs. I then went on to humira over 3 years ago now, and things began finally to improve. It`s a case of "hanging in there" until they find what works for you. Take care, Kathleen C x
|
|
|
|
|
|
|
