I avoid cabbage while flaring, fart city apart from anything else. Probably you didn't make your flare worse by eating cabbage but an inflamed gut can't handle high fibre. I had a similar experience...
I hope you didn't infer blame from my post either. It is difficult to word it. That trying alternatives when you're very sick is a risky business. I think people can lose sight of the fact that...
There was someone on here who is hemophiliac which makes surgery more difficult...it might have been van jordan? I'm sure he will speak for himself though...
I certainly made my colitis worse while trying out alternatives (not to mention the wasted money and mental energy). Like countess, I once dreamed of being med free but I now live a nearly normal...
No problem, I hope you find some relief soon...
I am liking xeljanz- it's the only drug that put me in a full remission since I was diagnosed. Remicade got me about halfway there (on 10mg/kg) but I had a very persistent proctitis that it just...
Are you allowed to bridge your meds if you swap so that there is an overlap? Both xeljanz and stelara work reasonably fast that if you had a remicade infusion and then a couple of weeks later start...
Calprotectin numbers mean a lot in my case. They are the most accurate indicator that I have active inflammation. I plotted a graph over time, they went from 1600 during my flare to 11 as I went into...
When did you last have a scope? Or a calprotectin test? Hard to know what treatment course to take without knowing how much inflammation there is......
Right, exactly, it should not lose its potency. Yes the trials showed 50% had a response initially, of which 50% maintained that response for a year, so that would be 25%. My doctor told me that it's...
Thinking outside the box...how was the visbiome shipped to you? Is it possible that it spent too long outside the refrigerator? Which would render it useless......
I forget all the technical terms, broadly speaking biologics are derived from organic material, hence the name biologic. They are large, complex molecules that are difficult to synthesize which is a...
Hi David Xeljanz is not a biologic so there is no risk of developing antibodies. The main risk (as far as I can see it) is if your UC progresses beyond what the drug can handle....at a safe...
I think it should be above 5 although it's a few years since I had the test, hopefully someone else can chime in......
Hi Andrina I'm sorry to hear you have to suffer so much :( I hope something like stelara could be an option. Maybe its a long way in the future but some hospitals in europe have been having luck with...
David, I could not tolerate any high fibre foods while flaring, not even scd legal ones. I could not tolerate yoghurt which is one of the mainstays of the SCD. I do not like some of the legal foods...
Interesting article https://www.nejm.org/doi/full/10.1056/NEJMc2009567 ...
I would try to speak to a specialist ASAP before starting prednisone. They may want to do diagnostic tests and pred can distort the results......
sometimes when I've forgotten my morning tablets I take them in the evening and then the next day I split the dose between morning and evening. Or the next day I take it in the afternoon (so 6 hours...
It's a good point - now that I'm in remission i can eat all sorts of healthy, nutritious, even high fibre foods that were impossible to tolerate when I was flaring. For me SCD was a starvation diet,...
Suddenly extreme abdominal pain and diarrhoea. After 2 weeks blood, by 3 weeks, 20+ bowel movements per day, got sent for a colonoscopy and diagnosis within a week....
There are dietary studies but they are often inconclusive because it's so complicated (everyone eats different things...everyone has a unique gut flora). There is funding at university level....
David: I have a good doctor who lets me test it that often. Possibly because I've had so many flares in the past and he likes to stay on top of things....
I tried many natural remedies during which time my flare got worse and worse, had to resort to stronger medication in the end (which if I had turned to earlier might not have needed to be strong). My...
Your daughter can always check what's on the label of the bottle/bag at the end of the infusion line. Plus if you listen to the nurses talking they will usually mention the drug and the dose (one...
In your shoes i would get a calprotectin test. But, my flares are really strongly correlated with calprotectin, which is not the case for everyone. I started to flare 3 months after dropping the dose...
When I was getting my entyvio infusion (1.5 years ago) the girl next to me was getting remicade. She told me the hospital had switched her to remsima (a biosimilar) because it was cheaper but she got...
Ideally you would want a bone density scan to see if you need calcium but that is expensive and I believe only warranted after 3+ cumulative months of prednisone use. I think i take 500mg per day...
I think you're most likely to form antibodies in the early stages of treatment. When I took remsima (biosimilar) it had always been the plan to at least reduce the dose of imuran if not stop it...
There is a blood test for imuran to test if it's within therapeutic range in your body. If not, you can increase the dose. 50mg is a low dose unless you're using it in conjunction with allopurinol....
On a tangent but what was the reason inflectra didn't work? If it was antibody formation then you stand a good chance with humira. If it was just that you had no response despite therapeutic levels...
Diet works for some people. Not everyone. I don't know the US system well, but in Europe the doctors are NOT funded by "big pharma" and it's not in their interests to put you on expensive drugs. The...
I would not delay colonoscopy because if you have severe inflammation it reduces your ability to fight infections, in other words puts you at higher risk of covid complications and hence it's better...
I didn't gain weight on xeljanz (until lockdown started and I can't exercise as much...). It's probably because your body is absorbing food better than before....
I have a load of beautiful dresses that I don't get to wear, but I'm also afraid to try them on in case the lockdown podge means they don't fit any more...
I started looking for the "like" button on this post then I realised I'm not on Facebook haha. That's a great way to have your pouch anniversary!...
Can your doctor write a letter confirming that your temperature may be elevated for a medical reason not related to covid19?...
There is imuran but tbh I would chose remicade over that. I was afraid to begin biologics but the difference between being on them versus only mesalazine was like night and day....
Thanks for sharing your story. Sounds like you're having a hard time! I really hope humira will work for you. In the last 5-10 years many new treatments for UC have appeared which give us better...
Its a little bit high but I think even a little bit of alcohol could do that. When I had a reaction to medication I had a value around 350....
I think your UC has priority if you're starting to flare. I'm sure the hospital is taking plenty of precautions....
Technically you can have an immune response to the probiotics when you take those kind of meds. I've been on high strength probiotics continuously through prednisone, imuran, remicade, entyvio and...
My doc is fast to reply, but i had to go through 4 different ones before I got a good one.... I agree with quincy, try oral and rectal mesalazine first, especially if it's helped you in the past....
Hi i am from the uk originally, just wanted to say to take anything in the daily mail with a pinch of salt...its not a reliable news source. Greetings....
My friend's husband came off imuran after a 5 year remission. That was 2 or 3 years ago..he's still doing well as far as i know. He still takes oral mesalazine....
I took azathioprine for about 2 years and didn't notice any changes in my immune response to infections. A couple of colds a year that resolved pretty quickly....
Sure, however if your hospital/infusion centre was taking the usual precautions, the chance of picking up coronavirus is probably quite small. I know it's really hard to decide which risks to take...
If it's bad enough to go to hospital, I would choose prednisone and isolate/stay home as much as possible (e.g. get groceries delivered)....
Sorry i didn't have side effects like that from entyvio but used to have problems with insomnia due to anxiety. It stopped after I got a dog - i think walking the dog 4x a day wore me out!...
I started to flare 3 months after reducing from 20 to 10mg xeljanz. Luckily we caught it early (fcp was about 350), and I got back into remission with mesalazine enemas. I stayed on the 10mg dose of...