IC in the UK

[Bacon]

I can't be the only Brit with this :)

Do they have a seperate and more local support board or something?

[ICNDonna]

You are definitely not the only Brit with IC. I'm sure you will hear from others.

Warm hugs,
Donna

[MarthaB]

hi, do you know about the british ic site? if not here is the website, www.cobfoundation.org .martha

[sweetangel2080]

I'm from the UK too.

[Angie]

Hi
No, you aren't the only Brit, there are loads of us!!
There is also another organisation with a message board.

http://www.b-p-s-a.org.uk

I am not far from you - just across the pennines, in Sheffield. If you want a chat, let me know.

Love Angie

[Tweety69]

Hi :) I also use the BPSA support group.

(hi Angie :bunny: )

Tweety x

[Traysmum]

HI Bacon

I am a Brit too and live quite close to you. I am from Warrington in Cheshire

Anne

[Bacon]

Hurrah! I feel less lonely already :) Thanks!

[KimP]

Hi Everyone,

I am from Canada and have a friend who now lives in Ireland and also has IC.

She's having a bit of a dark moment and want to help her out if I can. Does anyone have lists of charity organisations that can help?

Your input is much appreciated.

Many Thanks
Kim P

[Leanne41]

I am from the UK to

Leanne x

[Eccles]

Hi there Bacon :kissing: ! yet another Brit here :) - I also use the U.K. COB message board that sheba mentioned :toilet:

[mayray518]

I remember calling a "Chemist" in the UK in 1993 when I first got diagnosed and elmiron was available there at that time. So apparently they were ahead of us in IC study.

[Traysmum]

Hi Mayray.

Elimiron is only available in the UK on a "named patient basis", which means it is not available in Chemists but only through the urologist at hospital. It is not availabe through Chemists. Believe me, the UK is not ahead of the US in IC research. I have lived in the US and UK and I would choose the US anytime, maybe I was lucky in that a urologist I saw in the US was researching IC. The one I have here in the UK admits I know more about it than him!!!

[Morgana]

Hi, I'm in the UK too (and I also use the COB board)

Love

Mo
xxx

[lally310379]

hi everyone, I'm also from the Uk and have had IC for 12 years now! I'm not sure whether any of you feel the same way or not but I'm having real problems trying to get through to my Urologist about the severity of my condition! There seems to be a real lack of knowledge about this disease and the waiting times for treatments on the NHS are awful! Has anybody been able to get Elmiron in the UK? It's all just so frustrating!!!!!

[Traysmum]

I was on Elmiron in the UK. You have to ask your Urologist for it and he can prescribe it on a named patient basis. Only your Urologist can do this and not the GP. I used to live in the US and treatment there was much easier to get and no waiting times!!! Since coming back to the UK, it has been hard to get a urologist to understand IC.

[Angie]

Hi Lally
Sorry you are having such a bad time with your Urologist. I am really lucky as my consultant is one of the top urologists in the country who specialises in IC. He is very kind and understanding and he's up to date with all the treatments etc.
As for Elmiron, I've been on it for about 4 years - I'm really not sure if it works or not, but my uro says don't change anything.

Love Angie

[lally310379]

Hi there, thanks for getting back to me! Bit of a cheeky question but did you get it on the NHS or did you have to pay for it yourself?

[vicky Gordon]

Hiya,

I have IC and live in the UK also.
Had IC for 15 years but was finally diagnosed in 2001.
The COB foundation is fantastic like this one. Very helpfull and understanding.
Vicky

[Angie]

Hi Lally
I get Elmiron on the NHS, but it has to be supplied by the hospital. I usually ring the Urology Nurse Specialist, who gets a prescription signed and sends it to the hospital pharmacy, and I pick it up. I have had it posted to me occasionally, but if I'm not in I have to go to the postal sorting office and remember to take ID etc, so I pick it up myself now. It costs me the same as a normal prescription.

Love Angie

[lally310379]

Hi Angie, thanks for the info...do you think it's working for you??

[Angie]

I have to say I really don't think it does. I've had some pretty rough times still whilst I've been on it. My urologist says don't change anything, but when I see him on Friday I may suggest coming off it and having Cystistat instead.
The only thing I can really say makes a difference is Gabapentin.

Love Angie

[lally310379]

I went to see my Urologist yesterday and he said my next step would probably be Cystistat and he's given me Amitriptyline in the meantime to help me get some sleep...I think it's gonna be a case of trial and error!

[Angie]

They use a lot of Cystistat at my local hospital - they've had very good results. I hope it works for you.

Love Angie