Crohns Disease

LJ1

Hi Can Anybody Help? Have Been Suffering With Crohns Disease For Almost 2 Years No Medication Is Working Has Anybody Got Any Advise Or Tips That May Help??? Desperate For Answers!!

DrIndy

there have been a few threads started in this forum concerning Crohns disease - please feel free to discuss its therapies and new developments but please refrain from asking specific medical questions as they pertain to you.

PadraigagusBan

talk to your doc about one of the anti-TNF medicines. Remicade has been very successful.

DrIndy

Remicade or more correctly the generic - infliximab has made huge leaps and bounds - however the normal course is of 3 doses and then maintenance once every 3-6 months. It costs between €1000-€3000 PER DOSE (depending on body weight) however and thus it is generally reserved for conventional treatment resistant crohns disease or the aggresive fistulating variety.

LJ1

Thanks For All Replies I Shall Look Into The Treatments Mentioned

suzieoc

Hi everyone, I have crohns (4+ yrs now) and have been on infliximab (aka Remicade) for the last 2yrs (after small bowel resection surgery). I get 600mg every 7-8 weeks and it's working great (its a long story but i tried & reacted to everything else (pentasa,imuran ++). I'm in the USA though (for over 10 yrs) and now want to return to Ireland. So my questions are:

1) Does anyone here get this infusion more often than every 3 to 6 months? Over here the doctors are worried that your body can reject it if its not given regularly (ie not more than 8 weeks)...
2) If i'm not on VHI how do i pay for it (they have a 5 YR pre-existing condition wait). Is this covered by the drug payment scheme or some other public health service? The bills over here are huge (something like $8,000 /dose) but that is covered by my insurance here.

Any help is greatly appreciated!!

GuanYin

DrIndy wrote: »

Remicade or more correctly the generic - infliximab has made huge leaps and bounds - however the normal course is of 3 doses and then maintenance once every 3-6 months. It costs between €1000-€3000 PER DOSE (depending on body weight) however and thus it is generally reserved for conventional treatment resistant crohns disease or the aggresive fistulating variety.

Humira is a very good alternative, it's subQ though, although it does seem to have less tolerance issues. Same cost issues too

DrIndy

Its not covered by VHI as its too expensive (the irony of a private health insurance that only covers cheaper private things!) it is available in ireland for public patients - the key thing is to have a setup from USA where they contact a gastroenterologist over here to try to ensure seamless handover of medical information so you can be set up to receive it as soon as possible on return to ireland.

Treatment protocols differ from america - ireland follows the European Society of Gastroenterology guidelines which are much the same but created differently. it can be given more frequently if the case warrants it - but it is not as liberally given as in america as irish doctors work more on a cost/benefit basis.

GuanYin

VHI don't cover Humira over Remicade or do neither?

Christ, I've seen patients do quite well on Humira alone.

I know the guidelines are different


(or you're not talking to me and I feel like a tit)

suzieoc

DrIndy wrote: »

Its not covered by VHI as its too expensive (the irony of a private health insurance that only covers cheaper private things!) it is available in ireland for public patients - the key thing is to have a setup from USA where they contact a gastroenterologist over here to try to ensure seamless handover of medical information so you can be set up to receive it as soon as possible on return to ireland.

Treatment protocols differ from america - ireland follows the European Society of Gastroenterology guidelines which are much the same but created differently. it can be given more frequently if the case warrants it - but it is not as liberally given as in america as irish doctors work more on a cost/benefit basis.

Thanks DrIndy! That sounds good. So, if I can get a gastroenterologist to approve the frequency (based on evidence from my doctor here), I should be covered by public health right?

Once approved, is it easy enough to schedule (& rely on) appointments to get the IV @ the hospital (this comes to mind from hearing horror stories about waiting times while on public health... ;-)

Also, is the risk of rejecting the drug taken into account on the cost/benefit analysis? Is there any cases that you know of of somebody rejecting the drug after previously being ok with it? In my early days of getting it, i had a couple of reactions so they had to slow down the IV so it was taking 6 hrs or so to get it all in. Now i'm down to about 3 hours (but some folks can handle getting it faster)..
Thanks again!

Darwin

A member of my family has been getting the infleximab treatment for a little over a year at originally 8 weekly intervals for ulcerative colitis. Sometime ago the interval was reduced to 6 weeks only and treatment was supplemented with other drugs which affected her liver. I think she has built up an immunity to it (or something like this, I'm not a medical expert) and has to be put on some other treatment.

Cotsy

DrIndy wrote: »

Its not covered by VHI as its too expensive (the irony of a private health insurance that only covers cheaper private things!) it is available in ireland for public patients - .

I'm a bit out of date here I realise. But I received 3 infliximab infusions for UC, (it didnt do much for me) I got the infusions in a public hospital but I do have private VHI insurance. I didn't pay anything as a public patient and just my normal annual fee to VHI. About 1 yr later I recieved the VHI statement for my infusions and they certainly listed the cost for hospital expenses and the Remicade.

silversurfer

Remicade is definately covered by VHI, I had 6 infusions as a day case in hospital in Cork and only had to pay for a few blood tests

Humira is covered by the medical card and I believe the chemist/ prescription scheme where you only pay up to a total fixed amount of 90euro a month.

If you are on methotrexate or imuran there is a good chance (if you're not earning loads) of getting a medical card, get the GP to write a letter about you meds, these are both Chemotheraphy drugs and are fairly expensive

Rgds,
s

Kevster

Hey, I'm 25 and have been diagnosed with Ulcerative Colitis (UC) for around 4 years now. In case you aren't aware, UC is pretty-much the same as Crohn's except that it only affects the colon. Anyway, I take Dipentum (Olsalazine) which is just an anti-inflammatory. It works enough to allow me to get through my day, but I'm still in pain or discomfort 24/7. Plus, I have around 10 visits to the toilet each day.

I have been a member of an excellent online community for this:

http://www.healingwell.com/community/

There is a forum there for Crohn's too, and it looks to be very active.

RoxySasha

I am currently takin Imuran, Prednisolone and Pentasa for Crohns. I feel the Prednisolone works but the side effects are pretty crap when i am on high doses.
Your best bet is to speak with your GI to see what meds they can play around with. Sometimes it can take a long while to find something that suits you.
This is a great site for info : www.healingwell.com if you go to the Crons forum the people are very helpfull.

Kevster

Hey RoxySasha,

I'm back on Prednisolone now too because my colon has been in a bad way. The side-effects are fairly annoying alright. At times, I have tonnes of energy, but then I feel exhausted. Plus, My mind is always racing and I feel 'edgy'.

Kevin

allanmathews

Hi everybody

A few of us people that suffer with Crohns disease that have started up a group on Facebook called Crohns Ireland,

We plan for this to be a meeting point for people with Crohns to discuss everything from operations, medications, lifestyles and diet etc

hope to see you there, follow link below and join

allan

http://www.facebook.com/home.php#/group.php?gid=106491930028&ref=mf

metrovelvet

When I had UC I took colazol. Worked a treat and didnt have side affects. I know of people with chrons whom it also worked for even though it is mainly listed as a UC treatment.

crohnsgirl

Hi everyone,
My name is karen and i was only diagnosed last year with crohns disease after suffering for a year and losing four stone droping to 5 stone doctors convinced me i was making myself sick!, eventually i had to get most of my bowel removed after an emergency surgery after my bowel collapsed. Iv recently start getting pains on one side of my stomach again and it sometimes swells up? I was just wondering has anyone else experienced this and do you have any advice because i really dont want to be hospitalised again! :eek:

Thanks Karen x

DrIndy

Hi Karen - there is a number of people with crohns disease who discuss their condition on Long Term Illness who discuss day-to-day coping with their condition

http://www.boards.ie/vbulletin/forumdisplay.php?f=862

Regarding your own current situation - you really need to discuss this with your GP. Its not safe to give or accept medical advice over the internet.

crohnsgirl

Hi DrIndy,
thanks for your reply.. i would go see my GP only the last time i went he gave me pain killers and told me i could live with only one kidney! he thought i got a kidney removed not my bowel... lol... im goin to ring the hospital on monday and ask them! thanks for your help!

tallaght01

crohnsgirl wrote: »

Hi DrIndy,
thanks for your reply.. i would go see my GP only the last time i went he gave me pain killers and told me i could live with only one kidney! he thought i got a kidney removed not my bowel... lol... im goin to ring the hospital on monday and ask them! thanks for your help!

Just because you don't like your GP doesn't make it safe to accept medical advice from people on an internet forum, though.

crohnsgirl

tallaght01 wrote: »

Just because you don't like your GP doesn't make it safe to accept medical advice from people on an internet forum, though.

Im not a stupid girl, i like to think im quite smart so when i asked for advice i just wanted other peoples opinions as i know no one else that has crohns disease so i have no one to ask thats why i joined this so i could talk to people that had it. Im not the kind of person that will go out and buy tablets and take them because someone on the internet told me to take them.

Thanks

Heather5

Ive have just had my 2nd infusion of infliximab from Letterkenny hospital. My first infusion was given to me in Beaumont, Dublin as an in-patient. I was told that it is fully covered by a charity. Im aware that it is very expensive. However i was given some mixed information regarding becoming pregnant on this treatment from the two hospitals. Doctors at Beaumont have said it is safe to use and Letterkenny have said 'no way'. Im very confused as i was planning kids this year and dont know what to believe.

Does anyone know anything about risks etc?

DrIndy

Heather5 wrote: »

Ive have just had my 2nd infusion of infliximab from Letterkenny hospital. My first infusion was given to me in Beaumont, Dublin as an in-patient. I was told that it is fully covered by a charity. Im aware that it is very expensive. However i was given some mixed information regarding becoming pregnant on this treatment from the two hospitals. Doctors at Beaumont have said it is safe to use and Letterkenny have said 'no way'. Im very confused as i was planning kids this year and dont know what to believe.

Does anyone know anything about risks etc?

Such a nebulous and technical question should never be asked on an internet forum where anyone can give wrong advice - talk to your gastroenterologist and if needs be ask your GP about discussing this with an obstetrician.

Heather5

Well to be honest i would like to hear from people to say what they have experienced.

sam34

Heather5 wrote: »

Well to be honest i would like to hear from people to say what they have experienced.

people's experience isn't going to answer your question about risks though.
if someone says tehy had a healthy pregnancy and baby, that does not mean it is safe in pregnancy, and similarly if someone says they had a babay with a birth defect after taking it, that does not mean this drug was the cause of that.

you really need to be discussing this with teh professionals involved in your care.

Heather5

I have spoken my gastro and other professionals who have differing opinions and advice. If there is anyone who is taking remicade and wanting to conceive/ have had kids while on remicade can they let me know their experiences. As with Karen there earlier im not a stupid girl who will hang on the words/advice from the internet but its nice to talk to people in similar situations when the professionals have confused me.

DrIndy

Heather5 wrote: »

I have spoken my gastro and other professionals who have differing opinions and advice. If there is anyone who is taking remicade and wanting to conceive/ have had kids while on remicade can they let me know their experiences. As with Karen there earlier im not a stupid girl who will hang on the words/advice from the internet but its nice to talk to people in similar situations when the professionals have confused me.

Unfortunately - addressing this is against the charter of this forum - both medical doctor mods here have advised you to seek a professional opinion on this and specifically not to post further on this topic here.

Any replies to this and any further posting will unfortunately have to be deleted. This is not what this forum is for.

elle704

Hi

I was just wondering how you went about getting your remicade sorted in Ireland. I am in the same position as you now, moving home from Canada next month and I usually get my remicade here every 8 weeks. Any advice greatly appreciated..

opinion guy