HealingWell
Search Close Search
☰

Bad news. Whats next

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/18/2013 8:00 PM (GMT 0)
So finally got rid of my Cdiff and Salmonella infections. I'm tapering down on my Pred and I'm at 7.5mg. That is a couple of good things. Bad things are Remicade is totally off limits, Other Biologics like Simponi and a few other research type meds are also not for me. I have my GI working with like 4 other GI's to try to figure me out. So I feel with all that input that are probably right about whats off limits. I did get my asacol hd increased to 1600 mg 3x per day(it was 800mg 3 x per day). I also just added hydrocort suppositories. Next step for me is another colonoscopy to see how bad things are. I am going about 6 to 8 times a day and it is loose but no blood. Better than a few weeks ago for sure. Next step for me is either 6mp or Methotrexate. Now I had a pretty good dust up with my GI and wife about this. See when I tried Imuran it totally hammered my liver. I don't want to ruin my liver trying to save my colon. I kinda like my liver and have other more fun uses for it. Do you think 6mp or Methotrexate will be easier on my liver than the imuran? I had really elevated liver enzymes on the imuran and it scared me. The GI does not seem concerned though and thinks they will settle out if they adjust the dosage. Of course the only other alternative is jpouch which I'm not to keen on either. Any other drugs out there in the pipeline? The GI said no(and some of the Gi's he is consulting with are involved in the studies). Really I'm starting to lose hope
Posted 9/18/2013 8:12 PM (GMT 0)
Imuran becomes 6mp. Maybe the extra metabolic step will cause you less liver problems, but I though bad on one was bad on the other.

www.medicinenet.com/crohns_disease/page13.htm

Why are biologics totally off limits?
Posted 9/18/2013 8:24 PM (GMT 0)
"Bad things are Remicade is totally off limits, Other Biologics like Simponi and a few other research type meds are also not for me."

Why aren't those for you?
Posted 9/18/2013 8:59 PM (GMT 0)
Based on my reaction to Remicade(very high antibodies) the Research Gi's as well as my GI think I am not a candidate for the Other Biologics like Simponi. I don't meet the criteria for the other research meds. Really I have like 5 different GI's working on my case at the moment. My GI has been working with the researchers at Baylor as well as another GI there who I saw a few weeks ago. After my colonoscopy I will go back to see the GI at Baylor again. Kind of hoping the increased asacol HD and the addition of the hydrocort will have me in better shape before the colonoscopy.

Somedude said...
"Bad things are Remicade is totally off limits, Other Biologics like Simponi and a few other research type meds are also not for me."

Why aren't those for you?

Posted 9/18/2013 10:31 PM (GMT 0)
that sucks scum1
hope something pans out soon.
Posted 9/18/2013 10:35 PM (GMT 0)
People with liver issues to begin with cannot use biologics because it could make your liver issues really bad.
Posted 9/18/2013 11:33 PM (GMT 0)
I wouldn't put all your hopes in the methotrexate basket, there's very very little evidence to suggest it works for UC, aside from the fact that it "makes sense" (because it works for RA and kind of works for CD).

I've definitely heard of people being able to tolerate 6MP but not Imuran so it might be worth a go. FYI it takes a few months to kick in so you'll need a bridge til then, it's too bad you didn't start earlier in your pred taper... Instead of the hydrocort suppositories I'd say you should ask for hydrocortisone enemas, for most people they work really well and pretty quickly. For me personally they kept me out of the ER on Christmas Eve (granted I was in the OR three weeks later... still better than checking in on Christmas!). There is some systemic absorption but it still ain't oral pred.
Posted 9/19/2013 12:08 AM (GMT 0)
I was on the 6MP for about a month. I ended up in the hospital for 4 weeks. The 6MP caused my liver to stop functioning right. I was very jaudance. I had to have my gall bladder removed because of it. The surgeon removed 3 liters of fluid from around my liver that it couldn't process. The great news is my GI called me today. He said the liver function is pretty much normal now and I can start Humira soon. That was news we were all waiting for... Good luck on what medicine you use. Hopefully 6MP will.work for you :)
Posted 9/19/2013 2:53 PM (GMT 0)
Don't have liver problems except when I was taking Imuran.

DMC2011 said...
People with liver issues to begin with cannot use biologics because it could make your liver issues really bad.

Posted 9/20/2013 6:19 PM (GMT 0)
So I had a little blood last night and today. Only thing I did different yesterday was take florastor. Could that have caused it?
Posted 9/20/2013 6:47 PM (GMT 0)
I have heard people say that some probiotics wreak havoc on them so it could be the florastor.
Posted 9/20/2013 7:36 PM (GMT 0)
Seems to be getting better as the day goes along so I am hopeful. I really need to get off of this Pred :(

Got a call from the CDC today. Apparently the salmonella infection is a big deal!
Posted 9/20/2013 7:38 PM (GMT 0)
what did they say?

It's good that you're seeing some improvement. Are you going to start 6mp?
Posted 9/20/2013 7:54 PM (GMT 0)
Just asking a lot of questions about what and where I ate prior to getting salmonella. I am not sure on the 6mp. I have a colonoscopy set up for Oct 2nd. Will have to see how that goes. My GO mentioned some type of virus he wants to check for. My blood shows negative for it but he wants to send some biopsies to be tested. No idea what the virus is called though.
Posted 9/20/2013 7:54 PM (GMT 0)
Vedolizumab is awaiting approval. While it is a biologic it is not a TNF-alpha blocker like remicade/hurmira/simponi so perhaps it wouldn't have the same effects on your liver.
Posted 9/20/2013 8:45 PM (GMT 0)
Thanks. That is something to bring up after my Colonoscopy.


jc1973 said...
Vedolizumab is awaiting approval. While it is a biologic it is not a TNF-alpha blocker like remicade/hurmira/simponi so perhaps it wouldn't have the same effects on your liver.

Posted 9/27/2013 11:15 AM (GMT 0)
5 days away from my colonscopy. Down to 5 mg Pred. Not doing well at all. Plenty of blood, some fever, some night sweats.  Not sure what to do. Don't want to wind up in the hospital. Should I call GI about upping my Pred or just ride it out untlil my colonoscopy? I really want off of this pred!
Posted 9/27/2013 5:37 PM (GMT 0)
Have you checked Sulfasalazine? Dirt cheap and works well. Just ramp it up slowly, or the headache can be really really (really) bad. I felt like my head was going to explode and first time in last 6 years, I literally cried like a baby because of headache. (I have migraine since 2007.)

And since when Simponi is approved for UC? I thought it was in trials. FDA already approved it?
Posted 9/27/2013 5:57 PM (GMT 0)
It would appear Simponi is approved for uc:

http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=f86cb4a7-c358-4136-ae57-b32bda9bba00#section-1.4
Posted 9/27/2013 6:07 PM (GMT 0)

The Simponi would have been a trial thing. The GI's consulting with my GI are involved in a lot of trial stuff.   I'll add Sulfasalazine to my list of meds to ask about.  In the mean time I'm bumping my pred back up to 10 mg. I'm afraid I'm going to wind up in the hospital before my colonoscopy if I don't. My symptoms are getting a lot worse. I don't think doubling my doseage on Asacol HD has done a thing.

 

 

 

deltaforce said...
Have you checked Sulfasalazine? Dirt cheap and works well. Just ramp it up slowly, or the headache can be really really (really) bad. I felt like my head was going to explode and first time in last 6 years, I literally cried like a baby because of headache. (I have migraine since 2007.)

And since when Simponi is approved for UC? I thought it was in trials. FDA already approved it?

✚ New Topic ✚ Reply