Went to new GI today, he wants me off Humira UPDATE-All is well!

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 8/25/2008 9:31 PM (GMT -6)   
I have new insurance so I had to go to a new GI today.  I showed him my ulcer photos and tried to explain my 12 year history.  He was pretty uninterested. Then he was looking at my meds and said he was very concerned about the 6MP and Humira combination.  (It made me think of that other poster here that went into ICU from 6MP!)  The GI said that my immunity could be so low that I could get such a bad infection that I could die.  I tried to explain how the Humira/6MP has been the only thing keeping me from a violent flare and so far I have not had any infections.  He again was not interested.  Told me fine stay on Humira for now and he'll see me in 2 months then he wants me off the Humira.  I am getting a different doctor. 

UPDATE: I went to my old GI and he is going to join my insurance, yay!  He said that the GI I went to is a complete moron who doesn't care about his patients, basically.   Last blood test I had my WBC's were normal.  GI says by September I should feel even more improvement on the 6MP.  I picked up my script for Humira the other day, there was no pre-auth hassle like with my old insurance and it was only $30.  So today I am a happy camper. smilewinkgrin


Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08

Post Edited (princesscolon) : 8/28/2008 6:10:17 PM (GMT-6)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/26/2008 6:06 AM (GMT -6)   
I don't blame you. Just from your post, I don't like this doc either! You need to find one that is willing to work with you not you with him.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/26/2008 8:24 AM (GMT -6)   
Oh heck yeah....I second getting a different doctor. Sorry that you had to go through that princess. You've been through so much.

Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 8/26/2008 8:29 AM (GMT -6)   
Just be sure to tell your new doctor what your current doctor has told you about the combination of drugs.  Although you were put off by his disinterest (which I can completely relate to), he may have a point about the immunity problem.  I know its hard to even consider the idea of getting off of a drug that's working for you, but if you're risking major infection it may be in your best interest. 
 
I hope you find a resolution that works for you.  Let us know how it goes!
Katie, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML morning, Cortenama 100 ML night, Bentyl 20 MG and Tylenol (as needed), and multivitamin daily.
Diet/Exercise:  Avoiding trigger foods.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (finally showing much improvement)
 
 


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/26/2008 8:57 AM (GMT -6)   
If he wanted you off of Humira, what did he recommend as an alternative treatment?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 8/26/2008 9:43 AM (GMT -6)   
Thanks for your concerns, it's a relief knowing someone who understands is listening. Sue, he said he wants me to try just one 6MP a day and maybe raise it to two if necessary and if I get worse to get back on Humira. I know from my experience that going off meds and then re-trying them later usually is a disaster for me.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/26/2008 8:38 PM (GMT -6)   
I agree get a new GI, so sorry for you having to deal w/that!  I thought it was remi + 6-MP/Imuran that was potentially a problem??

Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 7.5mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Irish_Mom
Regular Member


Date Joined Apr 2007
Total Posts : 385
   Posted 8/26/2008 10:18 PM (GMT -6)   
Our son was on 6MP before starting Humira. After his third Humira injection, they did stop the 6MP. So far, so good. I did find a list of things that interact with Humira.
 
Abatacept
Abciximab
Anakinra
Echinacea
Methotrexate
Natalizumab
Rilonacept
Trastuzumab
 


Terri
 
_________________________________________________________________________________
Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son with UC; taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira. Canasa now added due to UP.
Husband with ankylosing spondylitis and psoriatic arthritis.

Post Edited (Irish_Mom) : 8/26/2008 9:21:53 PM (GMT-6)


Hobo
Regular Member


Date Joined Jan 2006
Total Posts : 187
   Posted 8/27/2008 6:14 AM (GMT -6)   
I sometimes think that it would be so much better that if whatever illness we have, the doctor we see has the same illness.
Then we would get some understanding.

quincy
Elite Member


Date Joined May 2003
Total Posts : 31005
   Posted 8/27/2008 1:55 PM (GMT -6)   
Don't assume that he/she doesn't or doesn't have a family member or friend who does.
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 8/27/2008 2:13 PM (GMT -6)   
Well tomorrow I am going back to my old GI who is not in network, and I am going to ask him to pick an approved doctor for me. I will discuss the 6MP/Humira with him as well, he's the one who put me on them. I was initially on only Humira but my last scope in June was very disappointing so my GI added the 6MP. Since then I have less bleeding and diarrhea and I understand the new doctor's concerns and will get my blood tested but honestly I'd rather take a chance. I know it's easy to say now, but I am enjoying getting some of my life back. I personally wouldn't wish this disease on anyone, not even my worst enemy. I just wish doctors and family/friends would be more understanding.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 8/28/2008 11:36 AM (GMT -6)   
That sounds like the reasonable thing to do. We all have to beware of the problems that can arise when changing gastros. Good luck with resolving this issue! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 8/28/2008 7:19 PM (GMT -6)   
Hooray!

Great news :) I'm sure that relieved some stress.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next infusion: 10/07/08
Last Prednisone dose:  7/15/08
 
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