I've been on it almost 2 years. I did alright with entyvio, but have had fewer side effects on Stelara. I have some issues frequent sinusitis and a few other odd ball things. I hope you do well!...
I don't have any advice, but I hope it's a temporary issue that will clear up quickly for you. Best of luck and congratulations on your pregnancy!...
@73Monte -- thanks for the encouragement!! @EruditePaul - thanks for the response! I'm fully vaccinated. Hopefully with the vaccines and my N95 mask, I will continue evading Covid....
Hi there-- I've been super cautious about Covid/long Covid. Between my CD and now chronic migraines, I don't need anything else to deal with. In the year I've been on Stelara I've had a number of...
I did not tolerate Remicade or Humira. I developed joint pains and fatigue with both. We suspect I had drug induced lupus with the Remicade, which resolved after a few months. Entyvio and now Stelara...
I'm glad I'm not the only one anxious about going out these days. I'm on Stelara, and struggle with intellectually knowing I'm not a high risk but not really feeling safe. I worry about long Covid....
I had horrible fatigue and joint pain with Remicade. My GP ordered an ANA test that was positive with high numbers. By the time I got into a rheumy 4-6 weeks later, my levels were dropping. I had...
I am sorry about the tough time. I can relate to complaining it all out. It gets frustrating to have nonstop medical issues. I had some loud gurgling and urgent D after my 2 recent rounds of...
Thanks Clo. I think a semi-liquid diet has done the trick. Just doing protein shakes and smoothies until dinner. My CT scan showed things were healing, which is a relief. I have an appt with GI...
I wound up in the ER last month with lower left quadrant pain. They did a CT scan and said it was mild diverticulitis. This wasn't too surprising since I'm scopes have shown diverticulosis for years....
Yeah, my appetite isn't back to usual yet. I'm not a great hydrator so have been trying to make sure I get enough water or herbal tea in to help move things too. I still have a fair bit of gas from...
That's good to know about the stool softeners! I'm still intermittently taking Norco, but haven't since Sunday....
They called today...not long after I posted and wanted to do some bloodwork too. I'm sucking it up and proceeding with the c diff testing. Surgery is no joke, and I am feeling just well enough to be...
In July my Crohn's flared up. I started Stelara at the end of July and I've been on prednisone since August. It was just settling back down when I had a hysterectomy on 9/15, both the GI and...
I wish I could take budesonide. I get similar side effects and it doesn't seem to do anything. Thanks for sharing the other steroid options. It's good to know....
That gave me a giggle. Thanks....
Thanks!! That seems smart to step down by 5mg. I'll go back up by 5mg tomorrow and hopefully will help until I can check in with my GI....
I started prednisone a couple weeks ago. It's been 4-5 years since I've been on it. We started at 40mg for a week, then 30, and yesterday I dropped to 20. Today I feel awful. Lightheaded, nauseous,...
As Straydog mentioned it's for constipation and I alternate between constipation and diarrhea. I've never had my magnesium levels checked. I think my digestive tract runs slow...just a guess since...
I think there's still hope the Entyvio could work. It's such a hard decision about medications and there really aren't too many to choose from. I hope Entyvio kicks in for you, or you find something...
Yes, my Crohn's is mostly in my SB. Once Entyvio kicked in I felt pretty good. About 10 months in I had a scope and it showed no signs of an active disease. It was the first time I was in clinical...
It took a couple months but the sinus issues and joint pains cleared up after I stopped Entyvio. I hope you'll start feeling like the Entyvio is working. It's so slow! My GI told me the same thing...
I think it took me about 4 months to feel like Entyvio kicked in. I hope you'll notice some improvement soon. From my own experience I'd say pay attention to any sinus or joint issues. I noticed...
I second the anti-virals. When I had shingles a few years ago, anti-virals seemed to help. I only did it a couple of times, but capsaicin cream was helpful with the pain. The heat generated from the...
Thanks all. Doing all thing things...PT, home exercises, and acupuncture. Running out of patience, mostly because it's been challenging with pain meds--as my options keep reducing. I haven't...
I had rotator cuff surgery in January, and it's been a rocky road. My shoulder seems to have built up a lot of scar tissue. It's not quite frozen, but close. I had an MRI done at 5 months and it's...
Thanks for sharing. Why did you stop taking it? Did you use anything else with entyvio when it put you in remission? How severe was your Crohn's?[/quote] I had a number of side effects...rashes,...
It put me into remission....
I had a few bad colds/sinus stuff while I was on Entyvio. Things settled in my sinuses and I'd get a horrendous cough. I think it took me 2-3 weeks to get better, and things lingered maybe a bit...
Thanks for posting....
Normal turn around time when I call? What do you think about alternative medicine/treatments? What is your colonoscopy protocol? How do you stay up to date about CD? What tests do you use? Good luck!!...
I have osteoarthritis in my knees. I have joint pain in my shoulders and hands, and that seems to be caused by Entyvio. Can you ask for another steroid injection? I can't remember how often you can...
Speaking of steroids, what about a steroid injection? An MRI will show any damage to the joint and any loss of cartilage. That might give you more options. When I had an MRI of my knee a few years...
The rheumy doesn't think it's Crohn's related arthritis since my flare ups aren't timed with intestinal flares. I think it's biologic related. I only tried mtx with Entyvio. I lasted 6 weeks but had...
I'm sorry you having such a tough time. I was on Entyvio for over a year. I developed joint pains, and then a whole host of other symptoms - sinus issues, rashes, yeast infections. I stopped Entyvio...
Sending good thoughts to you. I hope you get to talk to someone helpful. I admire your fortitude. ...
The motion sickness bands work well for me. You wear it on your wrist and it puts pressure on an acupressure point for nausea....
I'm so sorry. Lots of love to you and your family....
Does anyone know if you stop Entyvio if you can restart it? I can't seem to find any information about whether or not it's possible to restart after you stop. Thanks....
I've been on entyvio since August 2016. I think by January/February I started noticing some improving, and then continual improvement. I had a colonoscopy in June and for the first time since I was...
Entyvio is slow working. I feel like it took me 6 months before I felt like it was doing anything, and then my scope at 10 months I had no signs of inflammation. Good luck. Hope they figure out...
Well the reason I think my neck is affected by Entyvio is because when I was on humira and it flared up it was equally hard to get relief, but stopped when I stopped humira. I had trouble a couple of...
I've been on Entyvio for about 13 months. I had a scope in June and for the first time since I was diagnosed there was no inflammation. I'm starting to rack up a collection of side effects that could...
I've been on entyvio for a year. I had some joint pain initially but it let up eventually. I've never had swelling. I experience fatigue for a day or so afterwards, and it's not every time. I had a...
Sorry to hear you aren't getting relief from your fistulas. But what good news that you got to return to ballet. That is awesome news!!...
Ha! That's funny....
I'm glad to hear your subdivision didn't get flooded. I live in Austin, and work for the city. We're getting ready for evacuees to be bused in to us. It's so devastating to see what's happened. And...
I'm sorry to hear you have had so much trouble. This is the first time I've had sinus issues after all the various immunosuppressants I've been on. It's taken a while, but I do feel like I'm on the...
Sorry you have so much on your plate at once. I hate when that happens, and it almost always seems to be the case. ...
I bruise easily as well. When I'm on pred, I for sure get a lot of unexplained bruises. I suspect I bruise more easily during my period as well. And they do take forever to heal....