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Infliximab not funded feel so helpless

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porter89xxx

Hi all,

havent been on here in a while, i have been being treated for crohns since august i tried aza and 6mp and was vomitting alot so my consultant took me off them and put me on steriods which seemed to settle the symptoms but told me that the next step was to have a look in my small bowel again and gastroscopy tto see why i was vomitting. I was still vomitting off the drugs. I had the procedure done 3 weeks ago and the ti where the crohns was found looked okay, in my stomach it said atrophic looking gastritis bleeding found then in the antrum atrophic looking antrum and they found patchy erythema in the duodenum. They took biopsys but they come back normal. My consultant had a big meeting with the board NHS to get me funding for inflixmab because the other drugs have failed. Because i have only been diagnosed with capsule endoscopy and mri findings and not tissue biopsy they said no and they should think again. I am really lost and so upset with this. They have now ordered another capsule endoscopy test i spoke to my IBD nurse as i wanted to know why im having this repeated and would my diagnoses be taken away from me he said they are not doing this test to prove there is nothing there but to get me the inflixmab. I went and saw my gp who said the letter my consultant has sent them says small bowel iletis attributed to crohns so they havent said 100% but are pointing towards it. Im just so scared they are going to take the diagnose away from me but dont understand that they can due to the findings they have seen previously and with my previopus hospital. I am at my wits end i am now off my steriods and am already feeling very ill all im taking is pentasa and waiting to see my consultant and waiting for this test. Can anyone put my mind at rest here and let me no if anyone else has had something simular happen.
 
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abic

Hi,

I am going through the same thing right now. I have a diagnosis of indeterminate colitis/IBD (meaning it is Crohns or UC - they just cannot tell which one right now). My GI thinks it is crohns and feels I need to be on humira or remicade as the other drugs (asacol/AZA) have not done the trick. I too am being sent for an urgent capsule endoscopy to confirm if I have crohns in the small bowel and thus recieve access to humira. My GI also reassured me it is to see if I have crohns or UC and that if there are no ulcers in the small bowel, then he needs to access a different path to get me on biologics. All I can say is hang in there..... fingers crossed getting access to the biologics happens to you and happens quickly. I doubt they will take your diagnosis away- it sounds like, as in my case, they need concrete facts to access the funding for ifliximab. My GI told me crohns is very hard to diagnose and that they use a combo of histological, radiological, clinical and endoscopic evidence to come to a diagnosis.
 
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squigglygirl

I am also unsure of how it works outside the US, but I have been using Remicade for a year and a half and am enrolled in the RemiStart program. It loads your "account" with a set amount of money depending on where you are in your treatment, and you swipe the card at each appointment. You must pay a percentage of the cost of each appointment out of pocket, but it is SIGNIFICANTLY less than what you'd pay otherwise.

That being said, I did have a positive biopsy from my small intestine that confirmed my Crohn's, and I know that all of my Remistart stuff goes through my insurance. I would bet that any insurance company will hassle you until you have your own biopsy results, but I could be wrong. Good luck, I really hope you get it all figured. It's a wonderful drug. I thought I'd never be normal again, and I'm basically that now.
 
tots

tots

Location
Austin, Texas
I feel your pain!

I basically had to be rediagnosed and that path was kinda scary.

I don't know why we have to go through this over and over. I know your biopsy results
Can be negative and you still have Crohns. I was diagnosed twice with a small bowel series. Remember steroids don't help IBS.


Good luck, I hope you get help soon

Lauren
 
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Christie

Hi I don't understand why you can't get it on the NHS as your from the UK, I and so many others at the hospital I attend get it for free with no problems what so ever.
 
sickofcrohns

sickofcrohns

Location
Toronto, Canada
porter89xxx, sorry to hear what you are going through.

Austerity measures have meant that many health authorities in Europe (and in Canada) are trying to find ways to not put people on biologics, because of the expense. Sometimes there are new, austerity-influenced guidelines that pretty much tie doctors' hands: if the guidelines say that biologics are allowed only in the case of X or Y findings, they have to either do whatever tests they need to do on you to make those findings show up, or they have to fight tribunals to get you the meds you need.

So, and I know this seems like a waste of time and torture to you, if the NHS says you need a biopsy to prove that you have Crohn's, see if you can get a colonoscopy so that your doctors can get the evidence they need to twist the NHS's arm. If your last PillCam study showed lesions only in the small bowel, and they want you to do another one, hang on there and just do another one!

Been there, done that in Canada!

Solidarity & a hug! I hope you get the right meds soon.
 
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