Help please!! Nothing is working - want to try Remicade - so lost :(

Hello!

This is my first post. I am at my wit's end with this all. I was diagnosed in 2013 with Ulcerative Colitis. Have tried multiple drugs since then, the only one that seemed effective was prednisone but I obviously can't be on those forever. I had terrible reactions to Sulfasalazine with heart trouble and rashes.

I'm currently on 3g of Dipentum plus nightly enemas with terrible side effects. I am a paralegal by trade but cannot work and haven't worked the majority of the last year because I can't leave the house before 10am, the exhaustion, the joint pain etc.

The problem is, everytime I get a sigmoidoscopy or the like done, they tell me it's not that bad. That there is inflammation and ulceration but it shouldn't be causing the symptoms I am experiencing. They said I have reactions to these drugs and don't react the way I should to them.

I then feel like a complete waste of time, that maybe my drs think I'm exaggerating (which I'm not) and need to just get on with it. They are surprised that I can't work. I am losing blood, but admittedly not much and I'm at a good weight. I feel like I'm not taken seriously because I'm healthy looking at not such a low weight that I was when I was first diagnosed and my symptoms were unbearable.

I feel like the only reason why I'm at a good weight (59 kg) is because of the steroids I was on for months for last year which saw the weight pile on. I'm a lot larger than I have ever been which makes it look like I'm fine but I am losing weight and am concerned.

I want to try Remicade. I need to get back to work. My husband and I might lose our house if I cannot remain employed. I'm in Queensland, Australia - do I need to be near death before they agree to try Remicade on me? This is getting ridiculous :(

If you're in Aus on Remicade, please tell me what you think!! Or if anyone has any advice - it is all welcome!

Post Edited (mbaker22) : 1/19/2016 10:45:47 PM (GMT-7)

Thanks for your post miestomaga. I have asked once before and was told it was a last ditch effort. I just called my IBD nurse at my hospital and explained everything and that I want to try Remicade and she said the earliest they can get me back in is in a few weeks...grrr. sometimes you just need to vent!!

So remicade has worked well for you?

mbaker22 said...




The problem is, everytime I get a sigmoidoscopy or the like done, they tell me it's not that bad. That there is inflammation and ulceration but it shouldn't be causing the symptoms I am experiencing. They said I have reactions to these drugs and don't react the way I should to them.

this seems so ridiculous to me

they see inflammation and ulceration and tell you it's not that bad?

It is bad, there isn't supposed to be inflammation and ulceration in your colon. That is exactly what is causing your symptoms. If they think you are having reactions to the drugs they are giving you, then they should be giving you different drugs.

I've never heard of diptemum or whatever before. I'm in the USA for what it's worth.

That's so good that you've found Remicade effective - thank goodness for that!!

I totally agree with you that doctors can seem very out of touch with IBD. My doctors work at an IBD clinic in a hospital though and I thought they would be a bit more clued on but I'm starting to lose faith.

The first red flag was that when I was diagnosed, they discharged me from the hospital with nothing. No meds, no prescriptions, no follow up appointments. Nothing. So I went to my GP and explained what I was diagnosed with and asked for some meds as I kept flaring. Finally I got back through to the hospital and when I first met with the doctors at the IBD clinic, they told me I had "fallen through the cracks" of the system and they apologised and said I should never have been discharged.

Since then I've had issues with each medication, sulfasalizine sent me to the cardiac ward with tachycardia and fainting spells.

I mentioned Remicade prior to them putting me on Dipentum (Olsalazine) and they were not keen. But at my last appointment I explained that my symptoms were worsening and so they doubled my dose of Dipentum and gave me new enemas, neither of which have improved. I am going to get bloods done tomorrow and submit a sample and then wait for my appointment in a few weeks at the hospital and try and get them to let me try Remicade.

I agree with you about them telling me it's not bad - it made me feel terrible and like I just wasn't sick enough to waste their time. They told me what I eat has nothing to do with IBD (which I personally disagree with) and when I told them of some diets I had researched specifically for IBD they were surprised and hadn't heard of any of them.

Mmm...I dunno!! :)

Thanks for your advice though - I've never had anyone to talk to about my IBD :)

I went to 4 doctors before one was finally brave enough to prescribe Remicade. She's a leading specialist (in the USA) for Ulcerative colitis, and when she saw how sick I was, and how much I'd tired (Mesalamine, predisone -up to 40mgs, enemas, homeopathy, diet) she gave me a stern talking to and basically said: quit wasting time and get on the Remi.

I never looked back. It took 4 months of doses every 2 weeks, then every month, then every 8 weeks to see results. I have now been in remission since 2012!!! For me it was miraculous and gave me back my quality of life. I live like I never thought I would again...

If you honestly feel like you've done everything you can to help yourself, and nothing is working, I'd really encourage you to go for it. Change doctors and find one that does know what Remicade is and how it can work miracles.

All the best to you