HealingWell
Search Close Search
☰

vedolizumab- trial

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/11/2012 11:51 AM (GMT 0)
I'm back in hospital due to a flare
I'm so depressed and hate having uc

My gi is offering me to go on the vedolizumab trial
I'm just confused on what I should do

I really wanted to try Ldn tablets but my gi doesn't think
There is enough study's on ldn and its not good for pancolitis

I'm scared of the side effects this new drug might cause

Any suggestions?
Posted 7/11/2012 2:35 PM (GMT 0)
I have decided I will try LDN before I take 6mp again. I don't trust 6mp. I got the prescription from my GI, and am waiting to see how much probiotics and amino-acid supplements (on top of Lialda) work for me. But I am not flaring so bad I am hospitalized.

I'm reading that vedolizumab has less side effects than Remicade, and even the side effects of Remicade seem to be reversable if the infusions are stopped. The scientific evidence about LDN is limited to Crohn's, not UC. There is anecdotal evidence for LDN helping UC, but I think not so much when people were flaring so bad they were in the hospital.

Might the vedolizumab work quicker? Can you ask about how monitoring for side effects would be done? ... and if they are all reversible? Also ask about getting into (or near) remission with the biologic, and then using LDN as a maintence therapy. It is not like once you start it you have to stay on it.

Hopefully with some of these answers you can make a decision that is best for you. Good luck.

Post Edited (DBwithUC) : 7/12/2012 8:04:11 AM (GMT-6)

Posted 7/11/2012 5:49 PM (GMT 0)
Bdwithuc , I didn't think about asking if any of the side effects are reversable, I will have to ask.
While on the trial drug I don't think u can use other meds other then steroids .
I was thinking of asking my gi if there is a time limit to when I have to accept being in the trial .
I was thinking if I do ldn first and if ldn doesn't work do I muss the chance of being able to be in the trial.

All these drugs like Imuran scare me and my husband is so mad at me
Cos I haven't made a good enough effort to trying to get better the natural way with diet and supplements.
Posted 7/12/2012 1:35 AM (GMT 0)
My GI feels the same way about LDN. I am pretty sure that boxermom from this board has pancolitis and has had great luck with LDN. It's not that well studied but from what I've seen, it can be an plausible option for some. She tried Humira and Remicade and was feeling really defeated and things drastically improved for her with LDN. I don't think this illness is cookie cutter, it has a lot of causes and a lot of treatment options and the same things don't work for everyone. I've seen loads of people try LDN with no benefit as well...

I don't think the trial is an awful option but I think i'd be more comfortable with LDN over a biologic if it were a possibility. Just my opinion. I don't see a way of getting a script for LDN myself - I had to opt for 6mp during my last flare up. I can't spend all day going to doctors and seeking one who will let me try an experimental treatment. Trust me, I looked around, I even called doctors and none were responsive - it just became too expensive and time consuming.

There is an LDN list you can receive:
http://crystalangel6267.webs.com/
Contact her for a doctor in your area.
✚ New Topic ✚ Reply