So basically placebo is about training your brain not to respond to the illness without treating the underlying condition?...
I'm not sure this is directly relevant for this thread but.... I had a phone consult with my GI this afternoon. He was explaining that there were different types of colitis, depending on where the...
Just use the enema itself...
Body aches can have a bazillion causes, and not necessarily autoimmune. Is it in the muscles or the joints? I am prone to lower back pain which can refer into my legs due to a squashed disc in my...
When I'm flaring, I avoid foods that make me feel worse. Fibre is the main problem, i.e. most vegetables and legumes. As my bowel heals I can slowly re introduce foods. I totally get you about being...
I think our bodies do not have the resources to heal inflammation if we put our energy into stress. For me that means stress can trigger flares or make them worse, but I've also had flares at times...
I've heard of xeljanz being used as a bridge to biologics (since many people respond within 3-7 days and it's safer than pred) but it's not a mainstream protocol...
I think- if I understand correctly- ambling is saying the amino acids will be absorbed through the wall of the colon and into the bloodstream, rather than staying "on site" as it were to rebuild the...
Agree with CC - nurse is talking out of her poophole. Xeljanz has a half-life of about 5 hours and it's totally out of your system in about 3 days. So there is no reason AT ALL to stop it before...
I didn't get any infections on remicade. Had quite a few colds on entyvio though (because it still has some effect on the respiratory tract). I've been on xeljanz almost exactly 2 years and in that...
They don't do pre-meds where i live, not for entyvio or remicade. The nurse just gave me a big red button to press if I started to feel unwell (she also said she'd never seen an allergic reaction to...
I didn't have any vaccines before starting entyvio (or immunosuppressants in general) because my hospital at the time was useless and i needed to start therapy urgently, but if I'd had more forward...
Hi I'm a patient at a university hospital, here they are doing experiments with biopsies to see if they can predict which patient will respond to which medication, basically by testing the drugs on...
Hi good to hear! Hope you continue to improve. The flare might have been building for a while before you had symptoms. Like you, nothing has worked for me as well as xeljanz, but I also never felt...
Hi i used the enema at 4g strength. Interestingly the enemas never worked for me in the past; I think once the inflammation reaches a certain level then it's like using a water pistol to put out a...
I added rectal mesalazine (salofalk) when I started to flare on 5mg, rather than upping to 10mg. I felt better almost immediately....
Not sure if it's the same thing but I tried L-glutamine for a while (about 6 months). It did nothing for me......
Do you mean me or the OP? When flaring I can't tolerate citrus fruits, so I was referring to the citric acid in those. Same as I can't tolerate high fibre foods like lentils. In remission its not a...
Citric acid is lemon juice.... so i was dealing with actual lemons when I found it to be problematic....
Bothered me with cramping and more BMs. I agree it didn't make my UC worse but I didn't need that level of aggravation of my symptoms. When I'm flaring, the more severe the flare the fewer foods I...
Hi thank you for coming back to update. I probably have 50% odds of needing surgery at some point so I always appreciate hearing the surgery successes. (I'm doing ok on xeljanz for now) There was a...
It bothered me massively when I was flaring. Now i can tolerate it in small quantities (e.g. in hummus) but I don't go overboard with it....
It can take a while to heal severe inflammation. I'm on xeljanz which is supposed to be fast-acting compared to entyvio and even that took me 5 months to reach full remission...
Hmm march/april is still not too bad. I checked the latest info for the Netherlands and for under 60s it's "between end of February and end of August". Can't bear to think I might be penned up till...
ks-something I miss him too. I'm hoping he may have got frustrated with the vaccine discussions and left because of that, rather than because of serious problem....
I can't see a reason to use MTX when you haven't tried any of entyvio, stelara or xeljanz, all of which are standard treatments for UC...
Ps. I wouldn't go down the MTX route. The reason it isn't used much for UC is because it's not very effective. It's also a more potent immunosuppressant than the other drugs available to you. Also,...
UCgirl, I have been confirmed in remission by both scope and calprotectin and still have up to 4 BMs a day (usually 2 or 3) depending on what I've eaten. However the difference is that I rarely have...
I would consider other options even if that means surgery. What you have now is not really a good quality of life, moreover it's not good in the long term to have uncontrolled inflammation (scarring...
On dolores cahill (probably more but it's midnight over here and I'm tired...)...
If you're not getting a therapeutic level it imuran I doubt it's doing much. I've heard of people being on it 5-10 years, so 3 years not a problem, except now in covid times, together with remicade,...
That's awesome. I'm not expecting to receive a vaccine before April....
Re asymptomatic spreaders: Absence of evidence is not evidence of absence. Anyway I have two female friends my age (late 30s) who got long covid, still having debilitating symptoms after 200 days....
I've been on 2 biologics, no significant side effects, and massive improvements compared to mesalazine and azathioprine. As in, like night and day....
I always appreciate ambling's posts, for what it's worth....
Perhaps it's good not to put any doctor on a pedestal..... I listen to what the experts say and follow their advice but I don't particularly hold admiration for them as people. Maybe because I work...
My first symptom of a flare is abdominal pain... although it took me a few years to figure that out (it took being in remission to realise that it was possible to be pain free). Have flared for many...
Hey, sorry to read about what you're going through, I don't have a similar experience but just wanted to say that many people are really happy with their surgery. I nearly had surgery a couple of...
Hi Cyn sorry to hear that - but, knowledge is power and it might explain why xeljanz isn't working, as it's better suited for uc than crohn's. On the other hand I've had scopes while flaring which...
I was diagnosed with pancolitis from the get-go. It took a while to find the right medication (many worked partially, so I spent 2 years with proctitis while we tried different things), but have been...
I don't think anybody "wants" to take immunosuppressants but when you're pooping your pants on a regular basis then you can get a bit desperate. I certainly resisted them for the longest time. Apart...
NCOT i feel for you, I am from the UK originally and my sister was showing me the guidelines, they are so unnecessarily complicated! I have a phd and she is studying law, and we can't figure them...
The mortality rate depends on the availability of hospital beds. If those are full then more people will die.... Anyway I'm also grumpy today as my next appointment with my gastroenterologist is...
Not sure. I stopped it cold turkey because I started xeljanz and it's not allowed to take them together. Maybe ipoop has experience of this with infliximab/remicade?...
I could not tolerate veggies or legumes for years because of the fibre, it was only after I'd been in remission for over a year that I could finally eat whatever I want. Now that I'm in remission I...
I deliberately don't use Facebook groups for IBD because then you have to give your identity (unless you make an account with a pseudonym i suppose). Also for privacy from my friends - most of them...
Haha, that's a fun tool! The way it varies with country shows all the biases, namely it depends on the rate at which a country performs covid tests and uploads the ibd patients data onto the website...
Exactly, if it's the inflectra that brought you into remission, it's not a bad idea to try coming off the imuran, although i can understand your anxiety in doing so....
But why would the vaccine be more dangerous than being exposed to covid a second time? Both would trigger an immune response...
I'm in Europe and don't find the healthcare particularly holistic. They're a little slower to start with biologics for UC because of the cost - will generally try imuran first - but I've never heard...