Frustrated with meds!

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princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/13/2007 7:22 PM (GMT -7)   
Ok, I don't mean to be a downer, but I just want to vent about the fact that I have tried sooo many meds, and none have worked, or lost effectiveness, or I had a bad reaction to them.  I was so glad I didn't seem to have any problems with the Remicade.  Now I might have antibodies against it.  ARGH!  This stupid disease!  My stupid body!


Adrienne,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

Post Edited (princesscolon) : 12/13/2007 7:36:00 PM (GMT-7)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 12/13/2007 8:07 PM (GMT -7)   
I know how you feel. I'm getting to be at the same point but luckily 6mp is still working for me but I can no longer take Asacol, Rowasa or Canasa. This frustrates not only me but my GI as well because he doesn't like me to be on steroids (enemas) which is the only thing now that helps when I flare. Have you considered surgery yet?
 @--->--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** ~Allergies -Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~
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pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/13/2007 8:40 PM (GMT -7)   
It can take a long time for some meds to kick in which is the frustrating part of meds...

In my case, I'm allergic to oral RX so I had to rely on the natural route and thank goodness I've found some success with it.

Including eating healthy (no processed sugar, foods, fast-foods, caffeine, animal fat) and exercising regularly.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 12/13/2007 9:08 PM (GMT -7)   
Sorry to read that you're having problems with meds. Did your doctor rule out immunomodulators? It seems that other members writing to this site who are getting Remicade either took immunomodulators before or concurrently. Hopefully, they'll see your post & advise you. /Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 12/14/2007 5:02 AM (GMT -7)   
I agree! I have been waiting since august to see anything from imuran. I still haven't reached the effective levels in my system. So in the meantime I am stuck on steroids (steroid dependent at 15 mg for the last 5 months). It is all so frustrating. luckily i still have remicade to try but I am actively researching surgery.
Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07--bumped to 125 11/14/07
Prontonix once daily for acid reflux, zofran twice daily for nausea


wildfire07
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 12/14/2007 5:24 AM (GMT -7)   
And here I am crying cause of my own version of this disease, I haven't suffered with it nearly as long nor as badly as you have....I'm so sorry you're having such a tough time of it...I hope that you can find some relief, somehow.  You're in my thoughts.....

             
 
Diagnosed with UP Sept. 2007-2nd opinion & 2nd colonoscopy confirmed UP, & UC old pain & new pain, it's spreading...Dec. 2007
misDiagnosed with Degenerative Arthritis, 2006
2 4 asacol 3x daily for UC/UP. 
Canasa suppositories, also 3x  daily,
3tsp. Donnatol every 6 hours, as needed
1 20mg tab aciphex daily
1-2 depacote 3x daily for bipolar disorder
 


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 12/14/2007 8:19 AM (GMT -7)   
I am so sorry that you are having such a tough time getting your illness under control. I feel your frustration. I wish everyone with this illness could be as lucky as I am.

Hang in there, darlin'.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 12/14/2007 9:16 AM (GMT -7)   
Thanks everyone. I am done with my pity party now. If I did develop antibodies, I will have to try Humira. At least there are still other options. Sorry for being whiny. I get like that sometimes, but get over it! I am trying to avoid surgery but I have considered it a few times.
Adrienne,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


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 12/14/2007 2:44 PM (GMT -7)   
It's okay. We all need to throw ourselves a pity party once in a while. Life is tough with this illness. But about the time you've hit the depths, you're ready to climb out again and join the human race and recognize there still are some very good things in your life.

Don't further beat yourself up. It's understandable. Just recognize when you have too many pity parties or when climbing back out requires some assistance -- okay?

Hugs, Adrienne.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri

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