|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 64 Location: Sussex
|
Hi all,
My rhumey appointment went well today, joints have shown improvement which is good,
looks like Im jumping the gun with the pred reduction of 1mg per month, he told me to stay put at five mg for a couple of months, then if ok reduce 1mg per two months. His words we must be careful you've been on it a long time.
Mtx was apparantly taking its toll again on liver so I have to have this monitored closly for a time and if no improvement to reduce mtx dose and go back on steroids full 10 mg dose (was a little gutted with this, its taken blood, sweat and tears to get down to 5mg)
Still it was by no means doom and gloom, chest infection and arm rash put down to lupus kicking up with reduction in steroids, hopeful this will settle.
To go back in 4 months unless liver is naughty then ring straight away for earlier referral.
Hubby sprang a surpise on me and asked him about the toxilizumab drug, not yet licensed in uk, but its to be considered for the future or similar if liver cannot tolerate mtx in the long term..so there is hope for the future
Hope you are all well,
Ellie x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
|
Hi Ellie,
Good to hear that you had a positive appointment and that all seems to be going well.
I do hope that the MTX stops causing problems with your liver, unfortunately I had to stop after being on the drug for less than a a couple of months due to problems with mine.
If you're unable to take MTX there are other drugs which are a bit gentler on the liver, such as the Anti-TNF class of drugs. Because of my liver and apart from taking pain killers, I have not had any other treatment for my RA, but hopefully will be on a new drug soon.
Take Care,
Love,
Barbara
XXXXX
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 64 Location: Sussex
|
Barbera,
OMG that's absolutely awful, I hope they get you on a suitable drug soon, have got anything in mind for you?
Ellie
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 690
|
Hi Ellie, I am seeing my rheumy tomorrow and hope to start one of the biological drugs known as Anti-TNFs, I think they've been around for a few years now and are one of the newer class of drugs that have been approved by the National Institute of Clinical Excellence (NICE) the same lot that would not approve Toxilizumab!  !!!! Love, Barbara XXXXXX
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
|
Well done Ellie!
Hope you can reduce the steroids soon.....
Love,
Amanda
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 64 Location: Sussex
|
Thankyou Amanda,
Barbara, thats good news, good luck with the anti tnf, do you have any idea yet which one you will go for? Let us know what happens at your appointment,
I have a friend with severe idiopathic juvenille rhuematoid arthritis and she has recently gone on from etanercept to humira, the humira is proving a hit with her thankgod,
Good luck on your appointment,
Ellie
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
|
Oh Ellie, I have a good friend whose daughter has severe JRA. She has also recently been put onto Humira after MTX failing. It has been brilliant for her plus really helped with her iritis, which has caused her severe pain and problems, bless. She is only 10years. She was dx at 3years.
I hope this med helps your friend too.
Love,
Amanda
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/7/2009
Posts: 235
|
Hi Ellie, I am glad that you had a good rheumy appt.
Deb x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
|
HI Ellie Thats a good appointment so should be,sorry see the mtx affecting your liver,and having to up steriods.It will help the lupus which is good news. warm hugs melly cuddly cats make my world seem so much more fun
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
|
Glad to hear it was a good outcome. I'm still waiting for my rheumy appt, having had two cancelled.................
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
|
Glad you had such a positive appointment, Ellie. Kathleen x
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 64 Location: Sussex
|
Maria,
thats just awfull having two cancelled appointments, hope you get there soon....
Amanda,
that dreadful poor girl, my friend is only 19/20 years old and I love her sooo much, she has suffered so much and the humira is such a help to her,
Thankyou all for your support once again,
Ellie
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
|
Glad to hear you were happy with the outcome from your appointment.
Julie
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
|
Glad you had some positive news at your appt.
Lyn
|
|
|
|
|
|
|
