My GI visit yesterday, good and bad news...

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Date Joined Apr 2006
Total Posts : 733
   Posted 12/12/2007 8:08 AM (GMT -6)   
I finally got to see my GI for my follow-up since my colonoscopy, it has also been several months since my last visit.  The bad news is that I MAY be developing antiobodies to the Remicade, which may be the cause of my mouth sores and bladder/pelvic pain.  The worse news is that he really believes my joint pain is not caused by this, that it is UC Arthritis.  He said the areas I have pain are classic UC Arthritis spots exactly. (wrists, hands, knees and ankles). :(
The good news- First off, my 2 week flare-up seems to have subsided, I think!  My doctor is very optimistic about the Prograf.  My colon is 100% beautiful.  My only ulceration is about 1/4 and inch deep still, but is curling? around the edges, a sign it is trying to heal.  Since it is 2 inches from my anus, (sorry TMI) rectal meds should help (though I have tried them all over the years with no help!)  I am gonna try the Proctofoam HC again.  Other sort of good news is that if I can't take the Remicade, I will start Humira.  I am not happy about injecting myself, but it does save me the pain of appointments and IVs and finding babysitters.  Ironically, I have gotten used to it though and look at it as one of the few chances I have to relax.  The Humira should help the arthritis if I have antibodies to the Remicade.   So, more meds to take... One more Remicade infusion to "see what happens," oh boy.  I am still having trouble accepting the fact that I have arthritis at 27! 
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcourt, Colazol, Proctocort, Anamantle...
Diagnosed with Ulcerative Proctitis with rectal fistula in 2004, put on Remicade
2007:Increased Remicade dosage-660mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia
Current meds: Remicade 660mgs every 6 wks, Lomotil, Tramadol, Darvocet, Clorazepate, new meds I am about to start: Prograf, Cymbalta, Lyrica

Veteran Member

Date Joined Apr 2007
Total Posts : 1366
   Posted 12/12/2007 9:26 AM (GMT -6)   
I know, it's crazy isn't it? When I was 19 I was having severe joint pain and they said it was UC related arthritis and then I had a bone density scan that showed I have osteopenia from long-term pred use. At 19! Even my new doctors didn't believe me until I showed them the reports.

Well hopefully if the Remicade isn't working then maybe the Humira will really help. I think I would rather do Humira since there's a smaller chance of developing antibodies and I would hate to inject myself as well but like you said, it would be more convenient. Sometimes I feel like a lab rat, just having things tested on me to see if they will work for me and then moving on to something else.

Glad to hear your colon is looking better! I hope you're able to find some relief soon. :)
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
Should also be on supplements and probiotics and other UC drugs but I'm just not good at taking pills...

Veteran Member

Date Joined Sep 2005
Total Posts : 5129
   Posted 12/12/2007 4:41 PM (GMT -6)   

Have you ever gone for a second opinion? I think it is nice (and reassuring) to get a second opinion once you start taking certain meds (remicade, humira, Prograf, etc...).

DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 

New Member

Date Joined Dec 2007
Total Posts : 10
   Posted 12/12/2007 7:06 PM (GMT -6)   
You're darn right your colon is 100% beautiful!
Wolf, 27, Boston
Diagnosed 11/13/07
Currently on 6-9 Asacol daily and 1000MG Canasa Daily.  Living minute-by-minute.

Veteran Member

Date Joined Apr 2006
Total Posts : 3402
   Posted 12/12/2007 9:10 PM (GMT -6)   
Sigh - oh the agony of arthritis at a young age. I had horrible joint pains in my early teen years - to the point where I was sent to Mayo Clinic. Strangely enough, I vaguely remember the doc asking about my bms - which were normal at the time - and me thinking "huh?" That doc must have been on to something...

Keep the Tylenol and heating pad handy! Best of luck :)
Pan-colitis and GERD diagnosed May 2003
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
Co-Mod for the UC forum
Keep HealingWell running smoothly:

Veteran Member

Date Joined Sep 2007
Total Posts : 955
   Posted 12/13/2007 5:47 AM (GMT -6)   
just to let you know, i have had acute/severe UC for over a year now and i had UC arthritis for about 4 months.

good news!!!! it went away.
still had my flare going severely, but the arthritis just mellowed out to nothing.

my ankles were the size of baseballs and my knees were just shot.
i looked like i was an 85 year old when i went up and down stairs. i couldnt even "think" about kneeling without pain.
it was horrible.

BUT, it went away on its own.
dr told me that when flare goes away, the UC arthritis goes away.
so you shouldnt have it forever.

keep your chin up!
steph - 31 year old female - diagnosed UC in 2000
started as proctitis and now is pancolitis..this year long flare is now severe on left side only to splenic flexure. 
50mg prednisone 1x day with breakfast 5 weeks now.. will taper next week by 10mg every 5 days.
2x 500mg mesalazine 2x morning & night - colifoam enima 1x at night - 1/2 endone every 6 hours for pain
now taking calcium supps for pred side effects - got lots of those!
50mg imuran 1x day 8pm to have a baby - VSL#3 didnt work - Aloe Elite didnt work - Budesonide didnt work
ive lost 40+lbs and my legs look like sticks ... ewww

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