Questions about re-starting Remicade? Any other options for fistuals?

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Veteran Member

Date Joined Feb 2004
Total Posts : 732
   Posted 3/13/2008 10:43 AM (GMT -7)   
Hi - I have been off Remicade for almost 2 years now and have done great !
Had a colonoscopy yesterday and the results were not great crohns in colon and ileum ; 2 fistuals in colon and other vaginal area ...
Last time I ended up in the hospital with 5 fistuals I didnt even know I had them ...same here ...I have more stomach pain now since the colonoscopy then I did a day ago !
My insurance stopped paying for the Cade and won't pay for the doc wants to see me in two weeks after all path results are back to discuss the plan ...I know he wants me on one of these...but, I can't afford it...
Is there anything else to heal the fistuals ???
I feel like I have a "time" frame...I dont know how long before I am heading for trouble -
Dx with Crohns 23 years ago
1 surgery ; 15 years ago ... 
Cervical DDD and restless leg syndrome
Currently on ;  Requip ,  Diovan ( for high bp )

Glad Bag
Veteran Member

Date Joined Mar 2007
Total Posts : 699
   Posted 3/13/2008 1:57 PM (GMT -7)   
there are a few medicines I took other than remicade and humira -

Thalomid / Thalidomide (can't take without making sure you are on birth control - it causes birth defects, also not all doctors/pharmacies can prescribe it)

Flagyl - antibiotic

"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?

Veteran Member

Date Joined Apr 2005
Total Posts : 2346
   Posted 3/13/2008 2:07 PM (GMT -7)   
Have you ever tried a high dose of flagyl along with cipro?

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 3/13/2008 2:47 PM (GMT -7)   
yeah most docs want u on flagyl, started to cause nerve damage for me so now im just on cipro. i hope it will work. does in e one know if this is effective?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting has been my Godsend...Thank you

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 3/13/2008 4:25 PM (GMT -7)   
Just a word of warning that you have a 25% chance of reacting to the Rem if you've been off it for more than two years. However, that means that you have a 75% chance of being ok with it, so don't feel too frightened about it. Are you on an immunosuppressant like 6MP, MTX or Imuran?

I hope the insurance company starts paying for the meds you need. It sounds as if you're in strife there, and suffering.

Co-Moderator Crohn's Forum.

Regular Member

Date Joined Oct 2006
Total Posts : 367
   Posted 3/14/2008 6:46 AM (GMT -7)   

If Remi worked for you, I would try it again.  As for insurance issues, ask the dr. if he can contact your insurance and tell them it will be much cheaper to pay for the Remi than pay for all the things that you may need if you don't get the Remi (hopital stays, surgery, etc).

Someone else mentioned that you could have a reaction if you try Remi again.  This is true, but I would still try it.  Also, it may work, but not as well as last time.  But that happens with most drugs for CD.  Over time (and starting and stopping therapy) they lose efficacy.

Good luck getting this issue resolved. We all know what it's like to be in limbo. 

Veteran Member

Date Joined Feb 2004
Total Posts : 732
   Posted 3/14/2008 6:53 AM (GMT -7)   
Thanks everyone I know why I stopped the cade last time ..I just called my insurance and was told its $400 each time I go to the infusion center ...okay , that is a joke !

and as far as I know they will not pay for Humira at all ...I am still checking

Dx with Crohns 23 years ago
1 surgery ; 15 years ago ... 
Cervical DDD and restless leg syndrome
Currently on ;  Requip ,  Diovan ( for high bp )

Veteran Member

Date Joined Nov 2003
Total Posts : 7314
   Posted 3/15/2008 7:52 PM (GMT -7)   
misterie, although you may have been told 2 years ago that Humira was not covered, it might be now. It wasn't approved by the FDA for Crohn's until last year, so the coverage may well have changed. Once the FDA approved it, people who had not been able to try it because of the cost were able to get it covered.

If you still can't get it covered, call Abbott and find out if you are eligible for their prescription assistance program. You might be able to get it for or at a reduced cost through them.

Good luck!
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.
Crohn's Forum Moderator

Forum Moderator

Date Joined Mar 2003
Total Posts : 10405
   Posted 3/15/2008 8:54 PM (GMT -7)   
misterie, if your insurance company won't cover the Remicade, you may qualify for the Centocor Patient Assistance Program. Your GI probably has information about it, but if not here is a link:
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
Co-Moderator UC Forum

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 3/16/2008 2:49 AM (GMT -7)   
Hi misterie, Since you stopped Remicade 2 years ago you probably have built up anti-bodys to the remicade. If I were you I would do Humiria.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

Mary T
Veteran Member

Date Joined Feb 2005
Total Posts : 983
   Posted 3/16/2008 1:15 PM (GMT -7)   
I live in the province of Ontario, Canada and was pre-approved for Remicade coverage should I need it. Every year I get a letter requiring I re-apply. The Trillium foundation covers it for patients who don't have extended health coverage. Not sure there is an equivalent group in the states.
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