Firstly I'm not convinced everyone on this thread is an adult. Moreover, there's a reason why most of us defer to doctors/specialists for our treatment - because we do not have the knowledge or...
Thinking of you....
First of all, you are not the owner of Healingwell and therefore you don't get to dictate what people can or can't post in a particular thread. If you post in a public forum, people will have...
From the drug companies' perspective there is no incentive to do a head-to-head trial because they won't want to demonstrate their drug is less effective than a rival.... From the hospital side, I...
Sure.... There are not many head-to-head studies for UC treatments unfortunately....
Ah it's a pity you didn't ask her why she arrived at that conclusion- would save a lot of speculation on this thread! It sounds like you keep seeing registrars (sorry I don't know how you call them...
Suggests xeljanz is more effective, in patients who have previously tried anti-tnf therapy. https://www.sciencedirect.com/science/article/pii/S1542356522005109 ...
Entyvio can take a couple of months to start working....
I'm sorry you had bad experiences with "conventional" doctors. I tried 5 different ones before landing at my current one. He is brilliant and the only one who got me in remission after years of...
Where I live (outside the US) gastroenterologists are swamped with patients, and healthcare services are still dealing with a huge backlog from covid (example: i just had to wait 5 months for a dexa...
High ferritin can be a sign of inflammation. My sister gets that (crohns/ank spond)...
Not sure tbh. Noone ever gave me a warning on xeljanz but I don't know if the risk holds for all immunosuppressants? I avoid the sun anyway because I don't want to get wrinkles 😂...
I think part of the issue in this discussion is that we have different definitions of "root cause". When excess H2O2 is a result of some trigger, I would consider that trigger to be closer to the...
Ms - I was told to wear factor 50 sunscreen when i want to go in the sun (at least, when i was on those kinds of medication)....
Yeah I doubt that value reflects your colon. My CRP went up to 10 after my covid vaccine. Normally it's around 1, even when flaring....
I use VSL#3 or Vivomixx (same active ingredients) which have the highest CFU of any probiotic. My dad (does not have IBD) used VSL#3 when recovering from a campylobactor infection. It pretty much...
I think you need to test your inflectra levels +/- antibodies just before your next infusion. Impossible to know what course of action to take without that....
Xeljanz is one of the fastest working medications. Many people see changes within a week. It is associated with a slightly increased risk of thrombosis and some other heart/circulation problems,...
Hmm well I had some changes in the first week (stopped having evening/nighttime bowel movements by the 4th day) but it took 7 weeks before my doctor and I were convinced that it was working because...
CRP is not gut-specific. It can rise due to inflammation or infection elsewhere in the body....
Hi xeljanz is the only thing which fixed the inflammation in my rectum. I tried a couple of biologics before that but they had no effect on my rectum....
It's not uncommon to be intolerant to dairy while flaring. I am one of those people. I take a calcium supplement....
Anastasiya... I think you need to find another doctor. Pentasa is a very safe treatment and stopping it was almost certainly going to trigger a flare-up. For most UC patients, drugs are for life. At...
Salicylate is in many fruits and vegetables so if you had an allergy I would expect it to show up when you ate other vegetables than okra. It's worth checking in with a doctor and asking if it may be...
Well... my GI said some people even go 5x a day and that's still ok if it's normal for them. I've been scoped and had zero inflammation with going 4x a day so I know not to worry about it. I do have...
I go up to four times a day in remission.... As long as it's not urgent I'm happy...
There is some evidence that vitamin D deficiency increases both the likelihood of getting sick and of having a severe disease course. In other words, a vitamin D supplement may help. Furthermore when...
This paper from 2021 says it is estimated that 18-25% of UC patients will require hospitalization at least once. https://academic.oup.com/crohnscolitis360/article/3/3/otab029/6295642 Indeed, the most...
I wonder if the lab mixed your results up with someone else's. Still, with a crohns diagnosis it's not a bad idea to do an endoscopy, to see if there is inflammation elsewhere. Better too many tests...
I seem to remember the mortality rate in the 19th century was more like 60% but I forget where I read that.... Hospitalization rates have reduced significantly in the last 20 years with the advent of...
I was going to say something similar...when I've seen people needing hospital treatment for a bad flare they're usually given IV steroids and remicade (a biologic via infusion). Did the doctor say...
Have you tested for covid?...
In remission i can eat pretty much anything i want. When flaring badly, any kind of eating would cause discomfort. In between, i can tolerate some foods better than others. Old Hat's suggestions are...
One other thing, the levels can fluctuate a lot within the course of a day. Generally the levels are highest first thing in the morning (assuming you haven't been pooping during the night). Therefore...
It doesn't respond, it's a protein that's released when there IS inflammation. It often increases before you show any symptoms. And yes it can go up that quickly. I would trust the lab over your PCP...
Calprotectin generally rises in advance of symptoms...
Hi I am sorry you had to go back to ER but happy you finally get to see a specialist and have a colonoscopy! I hope also your covid stays mild. I would also have no qualms about biologics; clearly...
I forget the exact numbers but my ferritin did something like go from 15 to 180. My haemoglobin didn't really change, but, I'm not anaemic. I can't say I noticed a difference in my energy levels or...
I've had a ferrinject infusion which i assume is similar. It was fine. I'm not anaemic but tend to get low ferritin which is associated with symptoms like fatigue and hair loss. The infusion bumps...
Mark, you posted that same link in your own thread last week. Did you forget?...
And I would like to emphasise that many of the newer treatments like xeljanz, zeposia etc are NOT biologics. Being unresponsive or partially responsive to biologics is NOT a predictor of how you will...
I really feel for you. At my first hospital they never asked me how I felt. During one flare up I told them I have so much pain that I can't do my job and they told me to take paracetamol (I believe...
Well these days there are a lot more drugs besides humira and remicade, which each work by a different mechanism, so having a poor response to one is not a predictor of how you will respond to...
I don't know sorry, other than pushing to bring your appointment with a gastroenterologist forward. If the pain is so bad it could be considered an emergency. I find certain foods make the pain worse...
It might not be a bad idea to request another test of your blood levels of inflectra. Hopefully your current doctor is competent enough to know that needs doing just before your next infusion. You...
The CT scan won't necessarily show the full extent of the inflammation. I'm sorry you have to wait so long to see a specialist.... I share your frustration...
Well it's not really clear if all (or even many) medications were tried, especially since a lot of new things have come out in the last 5-10 years. And the newer ones are not all biologics either....
When i was diagnosed i had pain like i was carrying a knife in my abdomen. It took a few weeks to slowly get better on max dose of mesalazine. Later in another flare up, I took prednisone and the...
I don't think that's a good idea. Are you taking any medication for your UC?...
Steroids will likely help with the pain if you have IBD but they are a short term solution to a long term problem and these days should not really be a first-line treatment - especially when you...