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A noob from Hexham, Northumberland Options
Paul Barrett
#1 Posted : Friday, April 26, 2013 4:45:00 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/24/2013
Posts: 703
Location: Hexham
Hi Everyone,

I have just joined NRAS. Have been a diagnosed sufferer of Ulcerative Colitis since 1990 and was diagnosed with associated Enthesitis in Aug 2012.

Haven't got off to the best of starts with meds. Sad Sulfasalazine was my first scrip, and I had to come off that because of respiratory issues. 3 months of oral MTX had zero effect, and the 3rd injection of MTX had me in an ambulance an into A&E due to side effects.

I'd be interested to hear other people's experiences, particularly those with associated IBD. Is there a separate sub forum?

Regards
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
Kathleen_C
#2 Posted : Sunday, April 28, 2013 7:19:15 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 1,689
Location: Durham
Hello Paul, and welcome to the forum - there`s lots of info and empathy on here, so do keep posting.

I was diagnosed in Jan 2006, and sulphasalazine was my first DMARD, but it did absolutely nothing for me, so I was put on MTX. It did nothing apart from put me in hospital with resp problems. I was put on leflunomide, then cyclosporine, then a combination of drugs, then finally humira, which I started in August 2007. This has made a huge difference to my quality of life, and I take it on its own, since no-one wants me to risk the MTX again.

I can`t help with the other issues you have, but I know from experience that the process of trial and error to find the "right" drug is very frustrating. I was in a wheelchair until humira worked its magic.

I`m Kathleen, and I live in Durham - we come to Hexham quite often, as it`s a lovely ride up the A68. I actually did my second teaching practice at QEGS many moons ago!

Take care,

Kathleen

suzanne_p
#3 Posted : Sunday, April 28, 2013 7:19:19 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 8/25/2010
Posts: 1,289
Location: Buckinghamshire
hi Paul,

just wanted to welcome you aboard.

can't help with your queries but i am sure someone will soon.

i started on Methotrexate then added Hydrocychloroquine to the mix three years ago now. neither worked for me, so i was put forward for an Anti-TFN ( Humira ) and been on that since August 2011, which has worked well for me along with the above two.

i love Northemberland, i am a Londoner by birth and now live in leafy Buckinghamshire for a long time. but my Mum was born in Gateshead ( she's sadly no longer with us ) and then her family moved to Alnwick which is a wonderful part of the world. i haven't been up there for a long time now due to the long journey, but i do still have cousins and an Aunt there.

do keep posting and perhaps reading back some old threads as well, they can be useful.

Suzanne
lisamcb
#4 Posted : Sunday, April 28, 2013 7:52:15 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 3/8/2013
Posts: 144
Location: Dumfries
Hi Paul

Sorry about your diagnosis but glad you have found this forum. I am a newbie too and take metho, steroids + hydroxychloroquine. It's trial and error I think until you get the right balance of meds that suits your body.

Hope to hear how your journey is going.

Regards.


Lisa
sylviax
#5 Posted : Wednesday, May 01, 2013 4:59:22 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 5/28/2012
Posts: 665
Location: Newton Abbot
Hi Paul

Welcome to the forum - I'm Sylvia and was diagnosed with RA just a year ago - I'm on MTX and HDX - trial and error is such as frustrating time, so good luck that you'll the combo right soon.

Best wishes - Sylvia
Be kinder than is necessary because everyone you meet is fighting some kind of battle
jenni_b
#6 Posted : Thursday, May 02, 2013 11:09:18 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 2,237
Location: nr Southampton
Welcome Paul

I'm a duffer on the meds too! Been around the ra circuit a while. 17 yrs now.
I've got tummy issues. They are all meds related and of course the ra has had a chew too over the years so I had the camera up where the sun doesn't shine a couple of times now.
Duodenal ulcer once...that's now much better.

As for the meds, very difficult to say which ones will suit you until they try, my guess is that they will consider you for anti tnfs next. These are a family of drugs that target immune systems. I've heard tocilizumab (t-cell therapy) can be iffy on the tum but you'll have all those questions to ask later

I wonder if you were aware one immune prob can lead to another.

I think, for what it's worth, I've got "immuney gone wrongy" disease ;)

Seems to cover it better than just saying rheumatoid arthritis

How are you managing to get your head round this diagnosis? Are your friends and family supportive?

All the best
Jenni
how to be a velvet bulldoser
Paul Barrett
#7 Posted : Thursday, May 02, 2013 12:54:03 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/24/2013
Posts: 703
Location: Hexham
Yes I am aware of the interdependencies Jenni. Family are hugely supportive. Both my sisters were / are nurses and the elder one has Sjogrens. My son's a doc.

I like your IGW label - very appropriate. What concerns me is the duplication of effort that goes on to handle two linked diseases through twp separate teams, gastroenterology and rheumy. It doesn't strike me as joined up thinking.

Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
Naomi1
#8 Posted : Sunday, June 02, 2013 10:23:26 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 9/3/2011
Posts: 717
Location: Torbay
immune gone wrongy....going to look this up in the medical dictionary. Nice to meet you Paul Barret.
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