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Ulcerative Colitis
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Posted 7/18/2015 2:23 PM (GMT 0)
Hi!
I have been in the worst flare of my life! Going to the bathroom about 50 times a day with blood clots....
Hardly able to eat, lost 11 pounds already in not even three weeks.
Dr. Put me on Lialda and Entocort.
Lialda was $450.00 a month- so Doc switched me to Colazal Generic, $125.00 a month .
Yesterday had bad reaction to the Colazol- was in bathroom all day with blood, again. Some people can get bad reactions to the Mesalamines.
Started Humira last night, I am so worried about the Lymphoma you can get - but I have to get my life back.
This disease is so debilitating and scary!
Right now only on Humira and Entocort
Was on Humira last year- took about six shots- got allergic to it and had to stop it- but did go into remission for a year
Has anyone started Humira after stopping it for a while. If so . Did it still work?
Posted 7/18/2015 2:42 PM (GMT 0)
If you had an allergic reaction to Humira why are you on it again...? If you have antibodies to it, it wont be effective at all. You should consider Remicade or Entyvio at this point. Maybe even Simponi
Posted 7/18/2015 3:05 PM (GMT 0)
it sounds like you only start meds when you get symptoms, but you have likely had inflammation all along. this comes with colon cancer risk.

I hope you get this flare tamed. if you do keep on a maintenance med. have you discussed 6mp?

if this flare is so severe, you may need to get iv sterroids and fluids. maybe iron infusion.
Posted 7/18/2015 9:11 PM (GMT 0)
I got hives around the injection site. Dr. Wanted to put me on an injectable shot called Cemzia. It was $1300.00 a shot. I had five shots still in my fridge of Humira. That's why I am using it. If I get the same hives again, I will have to switch to something else. I actually was using
entocort suppositories for 13 months that put me in Remission along with the Humira shots I did last May and June- until I got the hives.
Hoping the Humira will help, and that this time I don't get the hives.
I have four shots left now. My insurance - Medicare- will not pay for any of the shots!
Posted 7/19/2015 12:23 AM (GMT 0)
You could try simponi. maybe it's less expensive. cimzia is not approved for UC anyway,
Posted 7/19/2015 1:25 AM (GMT 0)
Something seems off here. Why are you trying to treat an 18 inch inflammation with suppositories? It doesn't make any sense. If your GI approved this, he is very irresponsible.

Have you ever been on any immunosuppressants or did your GI just skip these type of meds? Also, were you put on prednisone at all? You only mention Entocort which is mostly used for Crohns because it works in the cecum and ascending colon. You would need either prednisone or Uceris as it works in the entire colon.

I've been on biologicals and did a back step to immunosuppressants and couldn't do any better.
Posted 7/19/2015 2:22 AM (GMT 0)
Geez sounds awful I feel for you. Can you also apply some healing foods while you sort out the meds ? People do have progress with canned spinach, salmon baked in canola oil as my only source of food stopped a nasty flare after 5 days. Very anti-inflammatory got it at whole foods deli. This was after chugging carsons bottle of fish oil which did nothing. I need slow moving solid mass of salmon with canola.
Posted 7/19/2015 3:39 AM (GMT 0)
Maybe try imuran and remicade
Imuran is both helps UC and it also will prevent antibodies from remicade
The remicade might be a better option because of you reaction with humira
You sound like you are in a very severe flare and Maybe should be hospitalized
Posted 7/19/2015 12:47 PM (GMT 0)
I actually looked up reactions to Humira Shots- it said swelling, hives, redness, and itchiness are common! If it helps my flare, I will have to put up with it. Taking Benadryl. Thanks for your reply.
Posted 7/19/2015 12:55 PM (GMT 0)

Andrina said...
Something seems off here. Why are you trying to treat an 18 inch inflammation with suppositories? It doesn't make any sense. If your GI approved this, he is very irresponsible.

Have you ever been on any immunosuppressants or did your GI just skip these type of meds? Also, were you put on prednisone at all? You only mention Entocort which is mostly used for Crohns because it works in the cecum and ascending colon. You would need either prednisone or Uceris as it works in the entire colon.

I've been on biologicals and did a back step to immunosuppressants and couldn't do any better.


I tried Remicade last years flare- landed me in the hospital- irregular heart rhythm .
Humira and Anucort HC - put me in remission for a year. Last years UC scope was only proctitis with about 2 inches above. After 6 shots of Humira, stopped, due to hives, but suppositories continued to work until
Three weeks ago . New scoop showed 18 in. up. I want my Dr. To check me for antibodies against Humira.
Posted 7/19/2015 1:03 PM (GMT 0)

Andrina said...
Something seems off here. Why are you trying to treat an 18 inch inflammation with suppositories? It doesn't make any sense. If your GI approved this, he is very irresponsible.

Have you ever been on any immunosuppressants or did your GI just skip these type of meds? Also, were you put on prednisone at all? You only mention Entocort which is mostly used for Crohns because it works in the cecum and ascending colon. You would need either prednisone or Uceris as it works in the entire colon.

I've been on biologicals and did a back step to immunosuppressants and couldn't do any better
Actually, my Doc put me on 60 mg of Prednisone, tapering to none over a four month period. Did nothing!

Posted 7/19/2015 3:59 PM (GMT 0)
To check for antibodies you might have to do the prometheus test which is pricey. I would just go the benadryl route and see if your condition gets better.
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