My wife has fears and I need advice please.

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mdf34
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Date Joined Feb 2010
Total Posts : 925
   Posted 8/3/2010 4:40 AM (GMT -7)   
As I noted in an earlier thread, my GI wants to try and start me on Remi, like VERY soon.  My wife is concerned that he seems to be so aggressive since I have been officially dx less than a year and my meds were only last modified in march.
 
She seems to think that the doc is pushing too hard, too fast for financial gain from my insurance company. 
 
I feel/know they want me to attain remission as quickly as possible and be able to reduce my meds to maintenance doses.
 
Could she be right?  I don't think so myself.
How can I allay her fears and make her see this as a good thing?
 
Any advice, words of wisdom, thoughts would be appreciated.
 
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 

MikeB
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Date Joined Mar 2006
Total Posts : 1169
   Posted 8/3/2010 5:03 AM (GMT -7)   

Without knowing your disease status and history it is impossible to say. There are two schools of thought in Crohns treatment -- one saying go big and aggressive early with Remicaid, Humira and the other biologics, the other saying take it slow and climb the ladder from less potent to more potent treatments until you find one that works. The proponents of the go-slow approach say, with some justification, that while you piddle around with less effective drugs, Crohns is doing permanent damage that can lead to surgeries and other major complications.

I sincerely doubt that the motivating factor here is insurance payments. Gastroenterologists have plenty of patients and make most of their income from procedures like scopes, not remicaid infusions, which are usually done at a facility somewhere else anyway.

In your place i would ask the doc why he wants to go to the big gun now and what he expects your future disease course to be with or without it.


Aussie1971
Regular Member


Date Joined May 2010
Total Posts : 115
   Posted 8/3/2010 5:04 AM (GMT -7)   
I suppose it depends on the extent of the Crohn's, how badly your bowels are affected by it. Are your current meds helping with the symptoms at all? I would assume that he wants you to start Remi as your current meds aren't helping as he thought they would, and Remi is a good option for long term remission. He'll also be looking at minimising any further damage, which can cause all sorts of problems (blockage, absess etc). Going on Remi is much better than facing possible surgery.

Best of luck.
39yr old Single Mum of 3 Girls living in Sydney, Australia. Diagnosed with Crohn's April 2009 after suffering for over 20 years.


Current meds: 6mp 150mg, Salofalk granules, somac, panadol osteo.

Failed: Vendolizumab clinical trial. Back on predisone, down to 35mg. Starting Humira in (hopefully) 4 weeks!

Also dx with Spondyloarthritis of the sacroiliac joints and psoriasis. Now suffering from steroid induced diabetes (again)

MikeB
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Date Joined Mar 2006
Total Posts : 1169
   Posted 8/3/2010 5:04 AM (GMT -7)   
Correction: the OPPONENTS of the go slow approach say that . . .

MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 8/3/2010 6:19 AM (GMT -7)   
Thought the same thing when Remicade was proposed to my Daughter at about year 3-1/2 of non-remission and suffering. Did take our time to think it out. It was scary to us at the time.

Looking back now, Daughter could have been in remission sooner had we not taken so much time to think about it. I truly believe in the aggressive top down approach these days!! In some cases, it saves a whole lotta misery fooling around with the lesser aggressive meds that don't work for everyone.
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!

mdf34
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Date Joined Feb 2010
Total Posts : 925
   Posted 8/3/2010 6:43 AM (GMT -7)   
To answer MikeB's questions.........Looking back at things I guess I have been dealing with problems for 15-18 years, but not so bad and constant that I thought there were bigger issues.  I thought I had things traced to certain foods like food allergies.  I am more of an atypical crohnnie, I get episodic pains such.  I am not a constant suffered with mega bathroom trips per day, unless I am going through a spasmodic time.  Last year it got to be almost daily, which got me concerned enough to go to a doc.  So now after dx with mild/moderate crohns and being on the latest go round of pills since march, my GI feels I should have made more progress by now. My ulcerations are throughout the small intestine, the most being at the terminal ileum.  The episodes are getting more painful, although 2 weeks apart vs. daily, and lasting longer.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/3/2010 6:52 AM (GMT -7)   
Have you tried either 6mp or Imuran yet? Those might be good options for you. Maybe while still on the Entocort you could start one of these meds and see if they help you. I know MikeB has been successfully maintained on one of these meds for years. I "personally" prefer to start with the lesser meds first and know that if it didn't work I could go up to the stronger meds. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 8/3/2010 8:25 AM (GMT -7)   
Since Remicade is designed to put you in remission and maintain remission, I'd do it now. I messed around an entire year avoiding my doctors advice to try Remicade. It makes it less likely you'll get worse and have to pull out the drugs I consider much more dangerous, like stronger steroids, and risk blockages.
 
I've been on Remicade 3.5 years and although I'm not in remission completely, my quality of life is 100 percent better than before. 
Bad fissure Feb 2005. Started Remicade 2006. Fissure #1 healed, now deal with smaller fissure that comes and goes. Clean scope 2009 except for fissure. Also on Pentasa.

snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 8/3/2010 9:15 AM (GMT -7)   
having said that, I should tell you that I once thought my GI had actually conspired with the surgeon to get me on Remicade. Surgery was my option without Remicade and the surgeon HURT me during exam so bad that I never want him to even think about me again! He was also unclear about the actual risk of incontinence, which is important to me, obviously. So, of course I chose the drugs.

Bad fissure Feb 2005. Started Remicade 2006. Fissure #1 healed, now deal with smaller fissure that comes and goes. Clean scope 2009 except for fissure. Also on Pentasa.

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 8/3/2010 9:21 AM (GMT -7)   
Nanners makes a good point; why not propose 6 months of 6mp or Imuran, then consider remicaid if that does not induce a lasting remission. From your description of your disease state, with widespread ulcerations and increasing symptoms, I would wager money that you are experiencing some major damage in there (especially in the narrower small bowel) that could have you headed for a stricture and surgery in a few years or sooner. The bottom line is that what you are taking now is not doing the job. The only question is, do you jump on up to the top of the ladder or climb halfway and see how the view is from there.

snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 8/3/2010 9:38 AM (GMT -7)   
Got a question: why do you guys consider Imuran and 6MP lesser drugs? I had to quit Imuran because it was frying my liver but am doing fine on Remicade, as far as liver function goes.

Bad fissure Feb 2005. Started Remicade 2006. Fissure #1 healed, now deal with smaller fissure that comes and goes. Clean scope 2009 except for fissure. Also on Pentasa.

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/3/2010 9:57 AM (GMT -7)   
My old GI put me on Remicade AS SOON as I was diagnosed.  It took 8 years to diagnose me and I'm sure there was a lot of damage done during that time.  Remicade put it in remission within a few months and it's been in remission since.  We have tried other lesser meds since then, but have always gone back to the biologics.  I am glad that we didn't mess around any longer and got it in remission asap, even if that required the more expensive meds.  And I agree with snappy...many of the other lesser meds messed up my liver enzymes and required me to have liver biopsies, etc., so the biologics aren't necessarily any risker.   
Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/3/2010 10:03 AM (GMT -7)   
There lower on the med chain. I have always had a milder case of Crohns and for me (my opinion) I would rather try the lesser meds before the Remicade/Humira type meds as they are usually the end of the line meds. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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