I've got a Champion as well - thing has held-up beautifully (have had it for about 2-3 years now). I haven't used it much lately, but I think I'll get back into it soon (I've had a lot of fatigue...
Klonopin. I'm not entirely kidding. (I would not have my PhD if it weren't for the stuff - seriously) My job is very stressful (my boss is the type that thinks stress is a motivational tool, so he...
I was on Azathioprine for nearly 5 years before it stopped working (I've read that for most people, 4-5 years is the upper limit for this and 6MP). We added Humira to it, which didn't work (I stopped...
I don't think you can "get" this from taking Entyvio so much as the lowered number of white cells in the gut can make you more susceptible to infection (and I bet anyone on an immunosuppressive med...
I'll agree with notsosicklygirl - Entyvio does not seem to be as effective for CD patients (and when it is, it takes longer to work, and a lot of CD patients need more frequent dosing). So, take my...
I have been on Xifaxin for...uh...5 years now (yeah yeah, I know)? I know it has been in trials for Crohn's, and the results suggested that it tends to lose efficacy after 8 months or so. I read a...
I second the FB Entyvio Warriors group recommendation. Be prepared to wait. I am doing pretty well now, but I didn't see a real difference until after my 5th infusion (and I am still on Uceris, so I...
Uceris works incredibly well for me - it usually starts working within 1-3 days. It isn't as powerful as prednisone, but it works almost as well (for me) and has far fewer side effects. Actually, the...
Huh. I'm AA for that SNP, and I went off LDN after a year - a scope at that point showed that it wasn't doing much for me (it did improve my symptoms somewhat, but my scope looked just as bad as...
My PhD is in virology, but I am not a clinician, so take it with a grain of salt. From what I've read on the CDC site, they should be sending your results up the ladder to differentiate between HIV-1...
Just saw this - there was some info in the trials that a subset of patients who responded to Entyvio lost response once they went to every-8-weeks maintenance dosing, but regained response when dosed...
I was going to suggest my GI from my days in Boston (Dr Korzenik), but it appears he (and his nurse) have moved over to the Brigham. If you don't have to go to MGH, specifically, I liked him quite a...
Good luck! If you do not see a response, please think about getting fresher pills. I actually did notice a big drop in efficacy with old pills when I was on LDN (to the point where I no longer...
Curcumin and my gut do not agree with one another - gives me loose stools/diarrhea, even when I'm on 40mg of pred (which usually leaves me constipated). So yes, that can happen. I gave it three...
Another recommendation for the FB group Entyvio Warriors - a lot of people on there (really nice people, high traffic forum, etc). I've had four infusions - at 0, 2, 6, and 14 weeks. A lot of folks...
wednesday77, Humira never stopped working for me, because it never started working for me (same with Remicade) - I'm in that "lucky" cohort of patients that don't respond at all to TNFalpha meds....
I gave curcumin a try, and it did not at all get along with my gut. Even on 40mg of pred, it gave me diarrhea/loose stools (tried a couple different brands). So, while the preliminary data looks...
Current guidelines are every year after 10 years of disease, due to the increased cancer risk (some gastros will let you go two). I have had two IBD'er friends who were recently diagnosed with...
Nearing week 10. Also have good days and bad days...been a bit of a roller coaster (it didn't help that I had a nasty cold 2 weeks ago, and I tend to flare-up after I get over such things - before...
Yeah, I don't know if anyone gives premeds, but perhaps you should mention this at your next infusion and get some benadryl? I've escaped the headache by taking Tylenol beforehand, though I did get...
While I'd agree that it doesn't look all that promising, word on the street is that Entyvio has a very slow onset of action, especially in regards to Crohn's disease. For what it's worth, I'm 9 weeks...
I was actually able to get my gastro to give me a script for LDN - I spent about 14 months on it. It did help (especially when combined with Uceris), but not enough - I'm no longer taking it for that...
That's great news! I'm at Week 8, and I'd say that I think it's starting to do something for me. I think. I was noticing an improvement in energy (and both my coworkers and the nurses were saying I...
I avoid antibiotics unless they are absolutely necessary (the older I get, the more often I have bad reactions to them (not necessarily my gut, but fun stuff like hives and peripheral neuropathy), so...
Just responding re: drug costs. My hospital is charging $17,349.40 per infusion. That's the drug cost, not including the other charges (that adds about another $1500 to the total). I am sure my...
5,000 IU/day keeps me at the upper end of the normal range (and sometimes a hair above - my gastro tests me about once a year). I haven't found it to have much of an effect on my Crohn's symptoms,...
I was on LDN from July 2013-August 2014. I was lucky enough to convince my gastro to let me try it (another doctor in his group had a patient on it, which helped - LDN put her into remission, though...
I've taken both Entocort and Uceris - I have Crohn's, but my disease is from the end of the terminal ileum down. Entocort? Did nothing (have tried it twice). Uceris? Works nearly as well as...
I saw from your other thread that Humira did not help your daughter...did it do nothing at all or not help enough? I ask because if it did nothing, the likelihood that Remicade will help is low. If...
I had my second loading dose last Tuesday. It's been up and down. I was expecting things to go downhill a bit due to stopping LDN. They did, but not severely - I'm doing better now than I was on LDN...
I just had my second infusion yesterday. I am doing slightly better (decreased frequency), but it really is too soon to tell. Hard to tell since I had been on LDN (just took my last dose last week,...
I see Dr. JP Achkar at the Cleveland Clinic (I have also had a surgical consult there, though it was years ago and I cannot for the life of me remember his name, though he was very knowledgeable and...
I have been on Rifaximin for about two years now (consistently - I had been on it off and on before that). It does/did work for me, but it doesn't kill a flare dead - it takes about a week to...
The probiotic of choice with C. diff is Florastor (Saccharomyces boulardii) - it appears to keep C. diff spores (which is why it is so, so hard to get rid of) from attaching to the gut wall, and...
Just lost my job in cancer research due to a lack of funding...not too depressed over it, to be honest (they lied to me about how much funding they had when they interviewed me). I'm looking for...
With my insurance, my copay is $30 a month, regardless of the dose ($30 copay for the Crohn's starter kit of 6 pens, $30 copay for the box with 2 pens). My GI doctor's nurse recommended signing up...
I've had this test done, and yes, it's just a simple blood draw. They just have to ship it off someplace special for the testing (I think mine was sent to the Mayo Clinic -- my doctor is at...
Yeah, I've started avoiding Boost/Ensure because of the HFCS, etc., too. My nutritionist recommended Benecalorie for those who need to get extra calories in. I gave it a try. It doesn't really taste...
To echo the previous poster, my gastro told me that C. diff is endemic amongst IBD patients now (in his experience). My C. diff test came back negative, but that happens, and as I was in the hospital...
Mine was: Pre diagnosis: Cipro and Flagyl in case I had an infection Post-diagnosis: 1. Asacol 2. Entocort/Cipro 3. Prednisone/Imuran (tapered off pred, stayed on the Imuran, went back on pred when I...
To echo other replies, 50mg of Imuran is a really low dose. There is a blood test available to show whether or not you are in the therapeutic range for Imuran to work (it's from Prometheus labs, but...
After drinking the entire jug of NuLytely for a scope 2.5 years ago (out of some stupid sense of responsibility), I never finish the whole prep (well, unless it's one of those "drink this little...
Barium tends to run right through me. The last SBFT I had (2 weeks ago), it was on its way out by the time I got off the table (glad they have a bathroom right there!). Though, I was made to do a...
In my experience, a lot of those side effects can come from prednisone. I had some real joint/muscle pain on pred, and my hair falls out during/after the taper, though Imuran (related to 6mp) has...
I just had two preps in two days at the hospital last week (if that isn't cruel and unusual punishment, I don't know what is) -- one for a scope (OsmoPrep, the pills), and one for a SBFT (Mag Citrate...
I have not been here in a long, long time....I had a 4+ years remission on Imuran, but my Crohn's flared-up back in November (and is still an issue). In my experience, you're better off treating the...