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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Remicade or nothing ?


03-28-2013, 02:23 PM   #1
arrowhead
 
Join Date: Jan 2013
Remicade or nothing ?

I was at the Dr.yesterday,so far he started me on steroids for about 2 months,nextI have been on apriso for about 3 months and I am feeling better about half of the time. Anyway the dr. said that I need to be on Remicade.I asked him if there was anything else,like in pill form that I could try before the remicade and he said no.Then I asked about low dose naltrexone and he said he never heard of it ?Then I was told if I did not want to go on Remicade I could find another Dr.What pisses me off is I cant afford to go thru the hole Dr. crap again,you know go back to regular Dr. then to the Gastro,tests,pokes probes same old crap.
03-28-2013, 02:30 PM   #2
Clash
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You could print out the studies(<--click here) on LDN, or even if he is unwilling to try LDN you could talk to him about AZA/Imuran, 6mp or methotrexate, they are immunosuppressants and are in pill form.

Sorry you GI is being so unwilling to bend with you.
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Clash
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
03-28-2013, 02:39 PM   #3
xX_LittleMissValentine_Xx
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I wouldn't advise being on nothing unless your doctor agrees.
But there definitely are other treatment options such as the ones clash has suggested.
Has he given you a reason why he has gone straight to remicade?
You deserve that at least!
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Diagnosed with CD March 08 at 17
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03-29-2013, 11:22 AM   #4
arrowhead
 
Join Date: Jan 2013
Yes,the reason he wants me on remicade is that the Apriso is not doing enough.There is not any other Dr.s so I dont know what I will do.I am traveling 50 miles now.The way I look at it is if I had to have an operation I would not let him touch me anyway,no confidence there at all.
03-29-2013, 11:34 AM   #5
Clash
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Apriso really isn't that great for CD(read this study) and I think it is formulated for the colon but there are other options before Remicade. The problem might be that the level of inflammation(not symptoms) warrants a biologic for getting the disease under control. If the inflammation is undertreated then you might end up with a situation that does require surgery, asymptomatic or not.
03-29-2013, 12:07 PM   #6
rygon
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Im on remicade and find it great. Its helped me a lot, where I have know got my life back. Luckily I have had no side effects from it either, and would definitely recommend it to anyone else.

What worries me is your doctors attitude. Of course there is apprehension going on to a drug like this, but saying its either this or find a new doc is not the way to go. What happens if it does not work, or you have major side effects? Does that mean you will have to find a new doc anyway? i would go on remicade for the time being to help settle your crohns down, but would also be looking for a new GI as he doesnt sound like much help if you cannot even discuss other options
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03-29-2013, 08:20 PM   #7
arrowhead
 
Join Date: Jan 2013
The way I look at it remicade would be my very last option.Any time you put the strongest drug for crohns in your body where do you go when it stops working?I am in my 50s and have never put chemicals in my system,until now.So it is hard for me to even think about invading my body with something like remicade.My crohns is very mild any way.My dr.s attitude is probably drug profit related?Who knows.
03-30-2013, 01:41 PM   #8
kel
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Jumping straight to remicade seems really odd. You describe your case as mild, do you have any fistulae or abscesses? If so that would explain why he wants the remicade. Otherwise I would change Doctors, you'll be glad you did. Sounds like his priority is getting those kickbacks from pharmaceutical companies not caring for patients.

Oh and in my experience most mesalamine products are useless for Crohns.

P.P.S I drive 200 miles each way to see my GI and it is 100% worth it.
03-30-2013, 03:06 PM   #9
arrowhead
 
Join Date: Jan 2013
I have no fistulae or abscesses, besides bloating and gas when I eat dairy,I am not sick.The only reason I know I have crohns is it said it on my blood test.I can not afford to change Dr.s right now.
03-30-2013, 04:32 PM   #10
kel
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I was not aware of any blood test that can diagnose crohns. Maybe things have changed in the past few years...
03-30-2013, 04:35 PM   #11
kel
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I can not afford to change Dr.s right now.
Do you have any idea how expensive remicade is? And how many months you will have to wait while insurance approves it?
06-26-2014, 04:13 PM   #12
danielwill
 
Join Date: Jun 2014
Location: kentfield, California
Have you tried Uceris? I had one doc say Remicade--for life--was all that would help me.

Another doc prescribed Uceris, which is new, a steroid that only effects the colon and isn't systemic like prednisone.

In two months I was in remission.

I'm surprised more people don't know about Uceris--it really worked for me.
06-26-2014, 07:24 PM   #13
loriwithchrons
 
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I am not surprised at your drs attitude...they must be making a killing off of that drug...with the horrible side effects list....I am not interested...I don't want to get sicker I want to get better...I was diagnosed 27+ years ago...it's very severe these past few years...We have to understand how the pharmaceutical companies work....if they actually healed people they wouldn't have loyal customers anymore.....there is no cure for CD, it progresses. I am lucky I got into nutrition, and recently lived on an organic small farm and got to drink raw organic milk and eat actual food vs GMO's.
06-26-2014, 07:27 PM   #14
loriwithchrons
 
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BTW...the drs said after my last colonoscopy last year that it's progressing into cancer....so why bother treating my CD anymore....I was so frustrated at my GI, no mention of nutrition, no help with pain management....all they pushed was REMICADE REMICADE REMICADE....and I guess I just don't care if CD kills me now....at least I'm not taking a chance of them letting me get sicker so they can line their pockets.
06-26-2014, 09:34 PM   #15
ryansbronco
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Do you have any idea how expensive remicade is? And how many months you will have to wait while insurance approves it?
For me with insurance remicade averages about $1000 for treatment. There is a lot to factor in medical billing. I would call your patient relations department. They can give you an estimate. Them look into Remistart
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