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Welcome our new member Angela Options
Julia17
#1 Posted : Saturday, July 24, 2010 10:59:04 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 2/18/2010
Posts: 1,098
Location: farningham kent
Angela put this post under " Drugs " so have moved to New Members so that we don t lose her - Julia


I have been on Enbrel which did not work very well, then Rituximab for one year which is the worst decision ever made as I have had no relief whatsoever except through increasing steroids.I have had a really miserable year with severe bouts of depression.

I am now faced with trying Humira ,similiar to Enbrel or the new drug Tocilizumab.

Can anyone help or had a similiar experience. I am seronegative for Arthritis and one Rheumatologist told me that Rituximab was unlikely to work well for me but my consultant disagreed!
Would be very grateful for info.

I cannot understand that after nearly four years I am no better and finding it difficult to cope.

AngelaK
jenni_b
#2 Posted : Saturday, July 24, 2010 11:28:59 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 2,237
Location: nr Southampton
Hello Angela and WELCOME to NRAS!

I have sero positive disease, so different to you but I had, like you a rotten time on the drugs- severe reactions to a few- really nasty one to the RTX.

I have a friend with severe RA, his is sero negative, and he did well on the RTX- so you never can tell.

I took the Tocilizumab- it is a very different drug in the way it works to the others- on a different part of the inflammation chain, IL-6 I recall. There are a few people on here who have done well and tried it. There is a young woman at my hospital who is doing wonders on it-no adverse reactions at all. She has difficult to treat sero-negative disease. I had an allergic reaction to this one so couldnt have it.

My RA is now being treated on the new anti-tnf, Cimzia.

I am 34, married, 3 children and feeling very very well for the first time in YEARS and YEARS.

Other issues ongoing from a long time of decline, but there is hope, even for me and other "difficult" cases.

Jenni x

PS has the rheummy mentionned cyclosporin, it is a DMARD and often used to treat "reluctant to treat" RA.

how to be a velvet bulldoser
dorat
#3 Posted : Saturday, July 24, 2010 12:03:10 PM Quote
Rank: Advanced Member


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Joined: 12/3/2009
Posts: 3,157
Location: Huddersfield
hi Angela,

Welcome to the forum!
Sorry to hear you have not yet had a good response to the drugs, but don't give up, there are others to try.
I have had RA for 9 years and it was 8 years before I started on humira which is the first drug to have made a difference for me.
I hope you find something soon that works for you.
Looking forward to getting to know you.

Doreen xx
Sheila-R
#4 Posted : Saturday, July 24, 2010 5:10:24 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 1/29/2010
Posts: 264
Hi Angela, Sorry to hear that you are having such an awful time, but welcome to the forum.
Although I'm sero-positive, Enbrel also didn't do anything for me, before that I was on Humira which also didn't have any effect, I've had Rituximab almost 5 months ago and that also isn't working as well as its supposed to and I have to take 10 - 12 mg of steroids to stay mobile, given that if I had the chance I'd try the Tocilizumab.
However as Jennie has said different things work for different people, its just such a pain every time you change with a six month wait to see if it works.
I suppose the good news is there are other drugs out there which might work so we live in hope - well I do.
Best wishes
Sheila
Rose-B
#5 Posted : Saturday, July 24, 2010 6:05:13 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/20/2010
Posts: 1,749
Location: Somerset
Welcome Angela

Welcome to NRAS website and forum. Sorry that you are not doing too well at the present
time.

I echo the others that it can take a long while to get on the right drugs. There are lots out
there and your RA spec will go through this with you. Do you have a Rhummy nurse ?

I am Rose from Somerset aged 56 and RA diagnosed Nov 2008 . I am sero as well
and not yet on a DMARD full time. MTX failed as liver problems, and on having got my
BP under control at the end of May I started Leflunomide but this caused migrane heads.
So stopped this as well. I am on 500 mg Celecoxib , amitript, and had steriod inject
last week. So this week (and for the next 3) I should be feeling quite mobile. However
it is annoying and very depressing when not on the correct RA drug.

Good luck - keep posting

ROSE
Kathleen_C
#6 Posted : Saturday, July 24, 2010 6:53:11 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 1,689
Location: Durham
Hello Angela, and a very warm welcome to the forum. I`m so sorry things have been so tough for you over the past few years.

I was diagnosed almost 5 years ago, and the first 18 months were the most miserable months of my life, trying - and failing - on various drugs and combinations of drugs, including sulphasalazine; MTX; cyclosporin and leflunomide. Finally I was assessed for anti-TNF therapy, and began to take humira. I`ve taken it for 3 years now, and it has made a consideable difference to my quality of life.

I hope they very soon find the right drug for you, and you beging to feel better.

Keep posting - you will find lots of support on here,

Kathleen x

lizziemouse
#7 Posted : Sunday, July 25, 2010 11:47:36 AM Quote
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Joined: 12/3/2009
Posts: 872
Hey Angela,
sorry if already replied elsewhere....!
Im Liz, 40 married to Paul, with two girls Sophie and Jess.
I'm sero negative too, have had this dratted disease since 1997, very well at times - current poorly / flare but good support from GP, hurrying up consultant appointment at the mo,
look forward to chatting and sharing support ~ Liz xxXxx
LynW
#8 Posted : Tuesday, July 27, 2010 2:39:34 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Angela

A warm welcome to the forum! Sorry to hear that you have so far not had much success with your treatment. As difficult as it is at times do try to stay positive there is always something different to try and with so many new drugs becoming available there is sure to be something that suits you. I too am sero-negative and this can make treating the RA very difficult. Whilst symptoms are the same as everyone elses our blood test results tend to be quite unreliable and do not always accurately reflect how we feel. This makes finding a treatment that will work quite hard, unfortunately.

My name is Lyn, married to Mike and have four offspring (22,17,17,15) all growing up quickly, as they do! We live in Thornton Cleveleys which is on the Fylde Coast in Lancashire. I have had sero-negative RA for 22 years, run the gamut of medication and several surgical procedures. Currently on Enbrel (well I will be when I restart following surgery!), prednisolone, naproxen and right now any painkillers I can lay my mitts on ... I feel like a right junkie!!!

I'm pleased you have found the forum. As you will have realised there are lots of friendly folk and always someone about to chat with. Do keep posting, I look forward to getting to know you.

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

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