Need advice

[sinead]

I'm a new member, would really like to get advice from someone who has Chrons.

I'm 33 and was diagnosed with Chrons over two years ago.

On no meds at present but GI told me today that I had to recommence. Was on Imuran during the summer, got very ill from it causing pancretitis. Really afraid to start another.

Would appreciate some advice please, do not know anyone else with this condition to talk to them.

 

[Nancy Lee]

Hello sinead and welcome to the forum!

There are so many drugs they can try,..let your doctor know you are
still having problems.

You say you were on Imuran and it gave you problems with your pancreas..
did the doctor not try any of the other drugs on you once the Imuran was stopped?

Okay your doctor says you have to start taking meds again...
don't be afraid..they will hit on the right one for you.
What does he want you to try now?

I'm glad you found us here on the net..
there is so much information on here
and you will meet a lot of friends
who have the same disease as you! :hang:

Welcoming hugs~Nancy

 

[sinead]

Hi Nancy

Thank you for getting back to me, really appreciate it.
Yeah, I was on Entrocort (stopped by GI) and Pentasa stopped (own decision to stop as GI told me research shows it is ineffective in Chrons) as I was more or less symptom free.
I started acupuncture and found it really helped to put me into remission.
But now today GI was kinda annoyed with me that I wouldn't make a decision today on which meds I would commence, he told me to come back in 4 weeks with a decsion.
My options are: 1/ Infliximab 2/ Adalimumab (Humira) 3/ Methotrexate
Frustrated that I have to start again so soon especially when my bloods are fine and I am doing well.

Thanks again for your kind welcome
Hugs back - Sinead

 

[Nancy Lee]

Okay I have taken Entocort with no problem and am currently on Asacol which is the sister of Pentasa.
Pentasa is usually given if you are in remission to kind of hold you in that pattern.

Now he has given you a choice of three-
1/ Infliximab 2/ Adalimumab (Humira) 3/ Methotrexate

I have not been on any of these, but I am sure plenty
of members here have, and they can let you know how they
are doing on these meds....maybe it will ease your mind
and help you to decide what to go on when you hear what others
have to say.

In a way it is good to have a doctor who lets you make
some of the decisions in your treatment.
It kind of gives you some sort of control over a disease you never asked for. :ysmile:

 

[sinead]

Thank you,

Really appreciate your advice.

Yeah, GI is understanding and knows that I am afraid of meds after the reaction that I took so he is being patient with me. So glad I found this forum and looking forward to hearing from people who have better experience and knowledge than me.
Thanks again
Sinead

 

[ameslouise]

Hi Sinead and welcome!

Are you having symptoms now or does the GI want you on meds for maintenance?

I have been on Humira for 7 months with no side effect so far. It wasn't really helping after about 5 months so we added methotrexate. Too early to tell if that's working but the side effects are brutal for me - mostly fatigue and fuzzy head. These are actually minimal side effects in that they are not serious, but they are seriously annoying!

Good luck - I am sure you will find the right one for you, it just might take some trial and error.

-Amy

 

[Manimation]

There's also Asacol, 6mp, humira, prednisone for really bad cases.

I'm on Asacol and I think it's one of the lightest drugs concerning side affects.

 

[Astra]

Hi Sinead
and welcome

Just my thoughts here, but why go on the 'big guns' if you're feeling well? I'd save them for the last resort!
I'm only on Pentasa at the mo, feeling ok now now after nearly a year on Pred, but cos I'm feeling ok, reluctant to take any of the biggies unless absolutely neccessary.
Pentasa works like a preventative, a prophylactic to maintain and ward of further relapses. I've been taking this for 5 years now.
Hope you stay feeling well for a long time to come!
lotsa luv
Joan xxx

 

[Guest]

hi Sinead & welcome to the forum

i can't really add any advice on the drugs that hasn't been mentioned already, but i just wanted to welcome you, assure you that you're definitely not alone with this condition, and suggest that maybe you have a look to see if there's a NACC (National Association for Crohn's & Colitis) branch near you - the more people you get to know with the condition, the better - i think - and if there is a local branch, they might hold meetings/coffee mornings etc..

 

[sinead]

Hi Amy

Thank you for replying.

Yeah think it's just for maintenance. That's why I am finding it hard to agree to taking meds because I am relatively symptom free, for the first time in years I am putting on weight and wonder what would happen if i commence them and then get a relapse, what would my options be then. I havn't had any surgery, thankfully and it has not been an option so far.
For me so far the side effects have been so rough with and can really sympathise with you having them!!!!

Sinead

 

[sinead]

Thanks to all for replying to me and welcoming me to the forum. Looking forward to logging in and getting and sharing info.

Still trying to find my way around the site so forgive me if I am making mistakes or breaking any rules. I am sure I will learn as I go on but feel free to inform me if I am doing anything wrong.

Reading other sufferers stories makes me so thankful that I am doing so well and have avoided major illness to date. Ye are all so strong and great to share your stories.

Yeah Jo, that's what I was trying to say to GI yesterday but his response was "that's like trying to get on the cart when its on the horse and going down the road", so I couldn't find a response to that quote. But that is really what I am thinking.

Tried to find out some information today at work, I work for the health service as an administrator
so plan to speak with the consultant I work for tomorrow (although he is a psychiatrist) and know that docs really do emphasise the importance of meds but hoping he will be able to tell me which one i should go for if I do decide to go down that route.

Not aware of any local branches near me but looked yesterday and think there are a few down the country so will look into that. Went to one last year but it was all about promoting meds and not personal like this forum.

Sinead



Recommenced my Pentasa today anyway but still not decided on others.