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What's After Remicade? (too much immune suppression)

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Ulcerative Colitis
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Posted 4/14/2013 5:40 PM (GMT 0)
What's next? I'm not afraid of surgery, but would prefer to try everything first. It's apparent that I will not be able to live a healthy happy life on Remicade. It has my colon in an easy remission, but I feel like dying half of my days due to mono that comes back after each Remi infusion.

Options:
-Biologics (Humira, Cimzia) --- Don't want these because I feel mono will be the same with them.
-Mayo Clinic (Clinical Trials?)
-Amino Acid Therapy (Looks hopeful for my case)
-LDN
-Fecal Transplant (Have my doubts for me personally)
-Reduced Medication: Try 6mp w/pentasa again, aided by Uceris/Pred while I transition.

**I could go back on 60 mg/day of Cymbalta again. I believe this would prevent me from the worst part of my flaring up (hence why I think Amino Acid Therapy would work, too.) I just was so blah on this dosage of the drug. I had no mojo, no energy pumping through my veins desiring sex... at all.

Is there anything else to try before surgery?
Posted 4/14/2013 6:11 PM (GMT 0)
1st - there is no such thing as ibs - it's a made up imaginary thing - kinda like a fairy tale only no wishes and shiitt -

2nd - what can you live with ? pooping 5 times a day ? blood once a day ? not having the energy you had at 17 ?

what's the best you've been overall since your dx ? what were you doing/taking at that point ?

3rd - what's the best you'll be with a bag or pouch ?

4th - i'm ten years older today than i was ten years ago when i first got this crapp - even if every bit of this crapp was magically gone, i'd still be 10 years older - duh ! so i'll never be what i once was - i'm more for being the best i can be at this point in my life -

5th- ya, that's why i have done everything in my power to stay away from the big guns, cuz then if they don't work, i'd be asking the same question you are - what the hell is next ?

Posted 4/14/2013 6:15 PM (GMT 0)
Maybe I would try LDN if I were in your shoes. I guess cymbalta isn't the end of the world if you can find other solutions for the lowered drive. There are things out there to treat that in men. Women don't have many options in that area. Clinical trials may be a good option. Look around!
Posted 4/14/2013 6:43 PM (GMT 0)
Soystud, spring two years ago (2011) I was in a remission on just pentasa. I was going 2-3 times a day, formed stools. I wasn't even on the highest dose of pentasa. I was doing many alternatives: l-glutamine, wild oregano oil, probiotics, etc...

I didn't have blood until mid summer, when I'd gotten a gf (and girl problems, lol).

I always will be a 2-3 times per day guy.

I've never been in a sustained remission for long though. It's always some pain, a bit of blood etc coming about within a years time. Remicade has me in remission, but feeling like death.

NSS, I'll look at LDN a bit more today, too.
Posted 4/14/2013 6:44 PM (GMT 0)
You didn't mention Uceris.
Posted 4/14/2013 6:47 PM (GMT 0)
True, Gary. But isn't that drug more of a "get me out of this flare!" drug?
Posted 4/14/2013 6:47 PM (GMT 0)
Wait, I did too mention it! Look at the last option!
Posted 4/14/2013 9:28 PM (GMT 0)
If you already haven't, maybe try giving the resistant starch and spinach+sunflower seed diet a try?
Posted 4/14/2013 9:52 PM (GMT 0)
Antibiotics (Flagyl and Cipro) helped me a lot. My first course of Cipro was when I was close to symptomatic remission due to a lot of prednisone, and I believe if I had stayed on Cipro for longer I probably could have achieved a pred-free remission. I went from one mushy/painful BM per day (with pred alone) to the only actual formed BM of my entire flare at the end of 10 days of Cipro. I tried Cipro and Flagyl, later in my flare with another doctor, but by then my inflammation had spread and worsened to the point that they helped but couldn't pull me all the way out of my flare.
Posted 4/14/2013 9:59 PM (GMT 0)
Holy cow, Liz, you went through a lot of medicines pretty fast from looking at your signature! I've done antibiotics with mixed results. They help when things are fully ulcerated and severe, but tend to make things worse when remission is near from what I can tell. I even tried the "Triple Antibiotic Therapy" with three different strong antibiotics in the summer of July 2011. I didn't see much in the way of results, except I believe my bleeding lessened or cleared up.

Stealth: diet's are not my thing. I've kept food journals and the only thing I can pinpoint is that food is not the primary issue with me. I've had remission while eating sugars and carbs, and flares while eating very strictly.

Thanks to you both for your replies! I'm struggling emotionally lately, and it's good to have some feedback. Thank you.
Posted 4/14/2013 10:09 PM (GMT 0)
Yeah, I did... in my defense (? or something) I was on cortifoam, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, and cortenema all at the same time. The others were more sequential :shrug: and :sigh:

The other thing I was thinking is that I wouldn't necessarily rule out Humira and Cimzia completely, especially since Remicade *did* work on your gut. How debilitating are your mono symptoms after an infusion? Would it be worth suffering through a possible mono-type-experience to give one of the other biologics a try? You could also look into the possibility of getting vedolizumab which is still being studied but supposed to work more localized in the gut. A few other members of the board here have used it with mixed results (and mixed is the best you ever get in the UC community, right? :))
Posted 4/14/2013 10:32 PM (GMT 0)
The mono is mixed. Some days I feel closer to normal, with body aches and not too much fatigue. Some days my head is full of junk, I need to sleep until 11 a.m., and I hurt all over.

I can endure the mono symptoms while I sort things out, I just want to draw a line at some point. I could definitely endure them more and try Humira.

In regards to mixed results... yep! that is all you ever get with UC!
Posted 4/15/2013 12:39 AM (GMT 0)
Olive leaf to start.. 4000 mg-5000 mg split into 2 doses taken 30 minutes before breakfast and dinner. There are also many other herbs to address the EBV. Maybe you can nuke it. But it's hard. Ebv likes gluten and sugars in all forms (simple, complex, dairy, etc)

Immune suppressants will always bring your ebv out. It's very hard to kick chronic ebv. Typically you'd reduce viral load and guard your immune system, not suppress it.

buhnerhealinglyme.com/symptoms/treating-ebv-and-mitochondria-damage/
Posted 6/7/2013 5:25 PM (GMT 0)
I just got off Remicade had a very severe reaction. Now that doctors want me to try Humira. My body can't handle another drug right now with who knows what type of side effects. So I am going wholistic, nature stuff and trying LDN. I will continue to be on 5 mg of pred. just so I don't get really sick, but I have decided to try it a different way and go one day at a time. Humira may be in my future, but not today.
D
Posted 6/7/2013 7:12 PM (GMT 0)
I came in here wanting to give you advice. I raised my finger then figured out I got nothing.

I suggest to wait for a cure. Any day now.
Posted 6/7/2013 7:57 PM (GMT 0)
 

LDN

Posted 6/7/2013 9:22 PM (GMT 0)
sounds like an excellentay plan 38 !

keep us posted -
Posted 6/7/2013 10:27 PM (GMT 0)
38,

Welcome to the forum.

Glad you'll be trying the LDN.

Will your doc prescribe it for you?

If so, which type, dosage, filler?

Let me know if you need any help.

Also, you may want to also do: slippery elm powder, l-glutamine, probiotics, and Paleo.

If you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 6/8/2013 2:39 AM (GMT 0)
You say, "diets aren't my thing" and I think that's a mistake. Food has nothing to do with problems in the organ that processes, wait for it...food? Sorry, but it does, though it may not be the only factor, which would explain your mixed results with food. I really, really encourage you to try Paleo for 6 weeks before you do anything radical, like surgery and live with a bag or urgency issues the rest of your life. You are so young. It took me 5 weeks on paleo but then it was a light switch, and I was off medication after that for 2 years, eating paleo, until I got food poisoning and was sent into a downward spiral, but that's another story. Try it! Here's a good website to start at: marksdailyapple.com
Posted 6/8/2013 3:03 AM (GMT 0)
By the way, I wrote my story here. If you are on your last hope, perhaps the antibiotic I was given, which saved my colon, can help you. The risk is c-diff. So you have to be careful or you could get sicker.

https://www.healingwell.com/community/default.aspx?f=38&m=2654894&g=2655065#m2655065
Posted 6/13/2013 10:04 AM (GMT 0)
@insofla what is the best filler for LDN?
Posted 6/13/2013 11:37 AM (GMT 0)
Best filler for oral LDN is: sucrose which is hypoallergenic.

Most of the others are problematic.

Did you get your doc to prescribe it?

Posted 6/13/2013 5:32 PM (GMT 0)
Thoreau,

The fecal transplants worked for me after 12 years of illness where nothing else had worked for a sustained period of time including Remicade. Two years later I am still symptom-free.

I also had good results treating IBS symptoms using Bupropion (Wellbutrin) and also a low dose of Doxepin. Neither of these drugs caused negative sexual side-effects for me in fact Wellbutrin may have actually caused some positive side effects :) There are a discussion threads on HealingWell.com about this that I think I may have commented on awhile back.

I think in my case controlling the IBS side effects was a very important part of what helped make the other treatments become effective. Drugs like mesalamine need time to act on the lining of the colon, which they can't if diarrhea is too heavy and good bacteria from pro-biotics and fecal transplants also benefit from limiting diarrhea so that they can start to work.
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