No Predisone - doc says only alternative is Remicade?

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Ohana
Regular Member


Date Joined Aug 2007
Total Posts : 89
   Posted 8/30/2007 3:07 PM (GMT -7)   
I was started on Prednisone and am evidentally allergic to it. Soooo, now nurse says doc says my only alternative is Remicade. I have an appointment to see him in 2 weeks, but that comment really bothers me. It seems like there would be so many other things to try first. I did try Entocort and that also gave me breathing problems and a sore mouth. I'm also allergic to sulfa drugs in the past.
 
Does this sound like a smart comment from a doc? What might be my response to him? I was only diagnosed last month and so I'm not ready to jump right in yet. I think I'm going to go with the denial/natural remedy approach for a little while.

Jenn4dex
Regular Member


Date Joined Mar 2006
Total Posts : 494
   Posted 8/30/2007 3:09 PM (GMT -7)   
They usually try 6mp first before Remi. I couldn't take it so they tried me on Prograf.
Jennifer
Diagnosed 1/06
CD of Terminal Ileum
Taking Pentasa, Entocort, Prograf and Remicade.


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 8/30/2007 3:24 PM (GMT -7)   
Ohana said...
I think I'm going to go with the denial/natural remedy approach for a little while.
You may want to check out Jini Patel Thompson's book Listen to Your Gut. She's a Crohn's sufferer and the book covers everything from drugs to diet.
Diagnosed with ulcerative colitis spring 1999
Possibly misdiagnosed
 
Maintenance dose sulfasalazine
Probiotics, l-glutamine and fish oil caps
 
 


belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 8/30/2007 3:46 PM (GMT -7)   
There is a new body of research that suggests the most effective way of treating crohn's disease is top down not bottom up. Which is to say hit the disease with the most effective drugs in the medical arsenal first before the disease has time to wreck its havoc throughout the system. I suspect your physician may be aware of this emerging new standard of practice.

The thing with crohn's is that it is a disease of cumulative insults. Over time, if you do not get it under control, it will do irreversible damage to your intestines and compromise your ability to absorb nutrients. That in turn affects every tissue in your body. Once the disease has done damage it is much more difficult to achieve wellness.

I have been coping now for 30 years and I too went the denial/natural route. It worked for awhile -- if your definition of worked is that I wasn't on heavy duty drugs (against medical advice) and I was able to work and care for my family. But eventually the cumulative effects caught up to me.

Now I am on some of the heavy duty meds and I'm finally experiencing my first non-surgically induced remission in 30 years. I feel better than I have felt in a long time, but I am a surgical cripple, disabled, unable to work at the career I loved. I will never be able to unring the bell and put my insides back to where they were when I was just diagnosed.

There's no way of knowing whether I would be in this position if I had heeded my GIs advice to go on 6-MP back in 1984 when he first recommended it. With the benefit of hindsight, I do know that i regret the decision.

There are many different ways of approaching a diagnosis of crohn's. No one can make the decision for you, but you will benefit from first acknowledging exactly what is going on as far as your crohn's is concerned. Cleopatra was the queen of da nile. You don't want to wear her crown.
Belleenstein:

30+ years living with Crohn's.


sr5599
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Date Joined Aug 2007
Total Posts : 1202
   Posted 8/30/2007 8:59 PM (GMT -7)   
Remicade worked great for me while I was able to use it -- 2 years of blissful remission. On the other hand, 6-MP/Azathioprene (Imuran) drug me down to the floor. I was so exhausted on those drugs (yes, correct dosage, we even used the Promethius test to make sure I metabolized it at the proper speed). Humira is another option with less side effects than Remicade. If I were to start with a biologic, I would chose Humira. Just my .02.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 8/30/2007 9:02 PM (GMT -7)   
Forgot to say that I completely agree with the top down approach! Don't give scar tissue time to form if you can help it. Besides, steroids are poison to your system and bones!

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/31/2007 4:13 AM (GMT -7)   
Hi Pred. is one of the top meds. in bringing symnptoms under control I would get proper medical meds for treating CD .Of course you might have a mild case but inflamation can spread and cause complications which can be hard to deal with .Denial is not something we can afford to do when our health is at state.Hoping you make good decisions for yourself .lol gail

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 8/31/2007 6:52 AM (GMT -7)   
If you prefer not to move to Remicade this soon, another option might be total enteral nutrition. This involves drinking (or tube feeding with) a special liquid formula instead of regular food for three to eight weeks to induce remission. Some people then continue to use smaller amounts of the same formula as a dietary supplement, along with their regular diet, to help in maintaining remission. It can be quite an effective treatment, and generally, if it's going to work, you will start to see improvement (decrease in symptoms and sed rate) within the first week to 10 days. It's rarely used in the US because doctors think it's too difficult to make people give up their regular diet for several weeks, but it's a first-line treatment in Japan, and used relatively frequently in the UK and Canada, and also used sometimes in Europe. At any rate, it's a possibility to discuss with your doctor.

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 8/31/2007 2:45 PM (GMT -7)   
6mp worked great for me. It was a way to get off prednisone but not as big of a step as remicade. I don't recommend the natural approach. Sometimes you can feel well enough to get around but the disease and inflammation remain and continue to do irreversible damage. I have an awful stricture to prove it.
Currently in remission!


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/1/2007 6:55 AM (GMT -7)   
There are other drugs out there, but they can take months for improvement. Usually prednisone is used during this time to keep the disease under control while waiting for the other drugs to kick in. He may be thinking that Remicade will kick in quicker, but be aware, it doesn't always.

You need to discuss why he said it is the ONLY other drug. Mention 6MP, Imuran, Methotrexate, and even Humira, and ask why he feels they aren't options for you.

Then it's up to you to make an educated decision based on what he tells you, what you know about other meds, and what you feel will work best for you with your symptoms. You make the ultimate decision.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/1/2007 8:07 AM (GMT -7)   
my GI went from pred and pentasa right to remicade. he is a top down guy!
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and imipramine...living with pain, but doing ok.


Krysta
Regular Member


Date Joined Jun 2007
Total Posts : 340
   Posted 9/2/2007 2:03 PM (GMT -7)   
I went from prednisone to entocort to prednisone to remicade. My Dr is a top down guy as well! I didn't want to be on prednsione forever and he didn't want me to be either. I think as of today I am starting to see results! For the first time in 7 years (was only diagnosed in april 07, though) I didn't have diarrhea today!!!!!!!!!!!

My third remicade infusion is september 13!
Finally Dx- April 13 2007 (age 26) ilio-crohn's-colitis. Surgeries:appendectomy, cholecystectomy, tonsillectomy, pinidal cyst removed,emergency abdominal surgery for hemorrhaging ovary from burst ovarian cyst, LEEPcervix, emergency abdominal surgery for grapefruit sized ovarian cyst removal, D and C of uterus, lumpectomy of breast.
MEDS: remicade, prednisone, Asacol TID, protonix, metformin, buspar, trazodone, multi V, B complex, flaxseed. Vegetarian, leaning towards vegan. no nuts, seeds, or wheat.
Many allergies. Polycystic ovarian syndrome, anxiety, depression, ITP 
Every tool is a weapon if you hold it right ~ Ani Difranco
 
 


MrsGriffin
Regular Member


Date Joined Jun 2006
Total Posts : 204
   Posted 9/7/2007 10:40 AM (GMT -7)   
I was going to post, but JudyK89 said it for me. I totally agree with her!
I'm a 37 year old mother, have had Crohn's for 15 years. Taking Imuran, Pentasa, Prevacid, Forvia, fish oil and Cymbalta.

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