I was flaring when I started Entyvio in April 2022. I was on Budesonide and tapered off that after my loading doses. Since then I've had no flare symptoms, CRP has been low, calprotectin good again,...
I've never been told they won't give me Entyvio if I'm flaring (which I haven't started since being on Entyvio). But is there any chance you're experiencing cdiff? Have you been in touch with your...
If it's not microscopic colitis, but it's chronic, what kind of colitis is it? Microscopic? I'm not really informed on other types of colitis outside of UC. As for vegetables, it can help to eat well...
https://www.healthrising.org/blog/2024/05/25/master-immune-switch-brain-chronic-fatigue-long-covid/ Has anybody been following this research? Realistically, I know it's a long time before we see...
I'm really sorry to hear about these troubles, Joan. My worst flaring definitely started after my two children were born, as well. For a long time, my inflammation was only ulcerative proctitis, but...
When I first saw a rheumatologist last year, I'd been having joint issues for long predating Entyvio. I have synovitis in my right knee--at one point, when this first started like seven years ago, I...
Thanks so much for this. I think a lot about my kids and UC....
Just chiming in to send love and support. This situation sounds so so stressful, and it’s easy to imagine any of us in your shoes. I’m hoping and praying with you for a good solution , quickly....
Hi! I've never had any weird/bad dreams associated with my Entyvio infusions. The night after an infusion, I often wake up super thirsty/dry and need to get up and drink water, which never happens...
I'm really liking Entyvio, and I'm at the two year mark now. It took a little while to work, but I don't have any discernible side effects, blood work is consistently good, etc. It doesn't help with...
Thanks folks! I had two shots as a child in the States and luckily had a little card with all my records that my Canadian province input into their electronic records. I'm not sure if I could get the...
So word on the street (or rather, chronic disease Twitter) is that measles outbreaks are probably coming to a town near each of us, if they haven't reached us yet. Measles is VERY contagious and also...
Kudos to you for helping a friend! I don’t tolerate salofalk, but when I tried it, I think I just carefully tore and peeled back the foil? I could be misremembering. I stored them in a cool closet...
I've done a little reading on melatonin, and one of the striking things to me was that most folks are dramatically overdosing it. Like we only need .1-.3mg an hour ahead of sleep, not the massive...
This is really fascinating. Thanks for posting....
Thank you for these responses, Susie and Joanna! They're definitely reassuring. Another doctor mentioned sarcopenia (muscle loss), and I'm waiting on a bone density scan too, as some X-rays of my...
Hi, folks, I had routine blood work this week, which my doctor orders every four months on Entyvio. As usual, my white blood count is a little low (it's been this way for years, which is frustrating,...
I have a variety of sensations in my body that either come from anxiety or cause me anxiety (it's like a vicious cycle). This is really just a problem over the last four years or so, since I had a...
Home after my Entyvio infusion and just wanted to chime in that is a slow-acting drug, so it’s good to be patient. I like Clo’s idea of introducing foods slowly. I try not to think of “good” and...
I’m so so sorry you’re going through this, Bacon Girl. I don’t have any experience with this drug, but when I was investigating SIBO a few years ago, I realized there’s a lot to it. It would be good...
I just want to say that the subject title of this thread is golden: thank you for a good chuckle. I hope you find convenient and healthy alternatives to the Quest bar! I also need protein midday, but...
Sometimes Sports Research (they are spendy) and sometimes Webber Naturals Extra strength. I’m in Canada—not sure what’s available in the US!...
Hi, Wayne. I take curcumin. I can't say whether it's helped, because I started it around the same time as starting Entyvio, but my CPR (inflammatory) levels have been low, even though I also have...
I haven't looked into getting infusions out of country--I've just timed travel around infusions so far. This did mean postponing one a bit, and I'm postponing one right now because I came down with...
Hello again, Sassysback! I think it's fine to stay on the Mezavant along with the Enytvio. I had to jump to biologics after a decade without any treatment at all because when I finally submitted to...
I’m not in Vancouver but a few provinces east of you. It’s not at all hard to find an infusion clinic even here. And I’m doing great on Entyvio! No real lasting side effects. My advice: get super...
None of my family members have been diagnosed with IBD that I know of, but my brother has had IBS for decades (it's been investigated). My parents, aunts and uncles, and grandparents were all without...
I have no experience with benzos, but I do know that my joint, eye, anxiety, and sleep issues—along with occasional dizziness, extreme fatigue, and other weird pain patterns—are absolutely correlated...
Just chiming in to add that I suspect it’s not an emergency. I have lots of neck and shoulder issues and sometimes get numbness or tingling in those fingers. My physical therapist has always been...
Love to see this! Thanks....
Do you have a smartwatch / health tracker? I switched last month from a Fitbit to an entry-level Garmin because lots of folks in the cfs/me and postviral chronic illness community on Twitter and...
Yes! Heat is also very hard on me, as are major barometric pressure changes. I agree that it's helpful to stay very hydrated (with electrolytes, not just water), eat cool melon, and rest while...
I'll chime in to agree that Entyvio can be slow, so it makes sense to wait and see. I was in an awful flare a year and a half ago, and I was nervous to taper off Budesonide and just be on the Entyvio...
I’m in central/Western Canada, and the smoke here is horrible again. To those wondering about health effects, I find it makes me achy and kind of generally anxious—perhaps from climate doom, but I...
I have no experience, just wanted to say I hope you get good answers and are feeling better soon....
Sometimes I get nausea from stress. Or there was a period a few years ago where I was nauseated every morning after breakfast, and it would slowly dissipate. It is miserable. Things that help me:...
Thanks, Sara14 and quincy! FlowersGal, my family doctor told me recently that I don't qualify for Paxlovid in our province's system, even with the Entyvio and multiple autoimmune conditions....
Hi, everyone! Just popping back to say that my scope Monday looked really good. I’m still waiting on biopsy results, but my doctor said everything looked great and so we’ll stay the course with...
Hi, quincy! My doctor has me doing Colyte. It's a midday scope, so he has me doing split prep. I've only every done Colyte for my past colonoscopies, and I've never had trouble, so I'm hoping for...
Sending hugs, BG. Rooting for you....
Thanks, folks. Michelejc, my PCP was the one who told me not to worry about stopping the supplements. There’s no anesthesiologist to call, as they aren’t involved in colonoscopies here—just conscious...
Hi, folks. I have a much-needed surveillance colonoscopy next week (my first since 2017, if we don't count last year's flex sigmoidoscopy when I was badly flaring--thanks, underfunded public health...
I’ve started with similar joint, eye, and occasional scalp issues in the past year and a half. They’re still considered mild enough that rheumatologist says we can hold off on changing my biologic as...
I felt so nervous about jumping to a biologic after managing mild UC for 11 years without meds and then learning I didn’t tolerate mesalamine (or at least Salofalk), but I have had no discernible...
Was going to chime in with the budesonide advice too: a steroid that’s more gut-specific. It helped me immensely last year when I was in an awful flare that sounds v much like yours. (I tapered off...
Hello, everyone! I just came across this recent research on the gut microbiomes of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, which notes some similar findings with folks who...
Hi, all. Keith, you note "I’ve seen news reports that we’re much more susceptible to colds, flues, and other viruses because of the social distancing and masking for a few years. Our immune systems...
Hello! I was on oral contraception for seven years in my twenties but haven't been for about 12 years now. My UC symptoms began around the time I stopped hormonal birth control. I was also flare-free...
I’m so sorry you’ve had such a bummer of a day. I relate to the medical trauma: sometimes appointments just bring up layers of memory. Your husband needs to deal with his issues. His comments were...
I'm sure others with longer histories of trying different medications will have insights here, but I wanted to pop in and say that when I had a major flare / disease exacerbation last winter/spring,...