Entyvio/ remission

How long did remission take for those on entyvio

I think that response is a little harsh and undeserved to the other members. You do ask a whole lot of questions on here and in the vast majority of cases members do reply and give you time and consideration.

You can use the search function to find similar posts as I'm sure this question has been asked before (I think I even asked it in 2018). There are not many entyvio users active on this forum, plus forum is always quieter at the weekend.

poopydoop said...
You can use the search function to find similar posts as I'm sure this question has been asked before (I think I even asked it in 2018). There are not many entyvio users active on this forum, plus forum is always quieter at the weekend.

Thanks poopy doop. I kinda figured it was an old question. Thankyou

TAA -- you DO ask a lot of questions. No harm in that at all. Just be patient while waiting for responses. People here are generally willing to help others when they can. Keep in mind that there is a search feature in the forum that can help you find info quickly.

You said you have had 3 infusions -- those would have been your loading doses, correct? Have you noticed improvement even if it's not remission? If so, hang in there and give it more time, but if you haven't had any improvement at all you should probably talk to your doc. Seems like you should be seeing some improvement if Entyvio is going to work for you.

Be careful with adding new supplements right now. You won't know what is working -- the supplement or Entyvio. I know we all get impatient and just want immediate remission. For most, it takes time.

FlowersGal said...
I was in complete symptomatic remission by around month 4. But a colonoscopy around that time still showed some microscopic inflammation and disease. The next colonoscopy (not sure how much longer that one was — maybe 6-10 months later?) showed complete remission.

But the point I want to stress is that I didn’t just wake up one day 4 months into my entyvio infusions and be symptom free. Before that there was a lot of improvements! Healing from years of disease or a year-long flare takes a lot of time! Are you starting to see a reduction of symptoms? Fewer BMs, less blood and pain/cramping? If so you can count that as a VERY positive sign!

Yes I’m seeing improvements on some days fully formed stools. Other days mucous but usually at the end of a bowel movement. A lot more formed stools but still some burning afterwards. No pain and most days only one bowel movement. My symptoms definitely coincide with my cycle. Days off my hormone cream are the worst I had a calprotectin score of 28 which I’ve never had since being diagnosed. Some days I feel like it working but it’s slow

GrittyHope said...
I think it may be that there aren't as many on Entyvio here? Aries, I'm only three loading doses in myself and feeling okay, but I think the two months of Cortiment (budesonide) went a long way in helping quell my terrible flare.

Are you on Facebook? The Entyvio Warriors group there is very active, and folks often ask this question. From what I can tell, it really varies: some people have good response within 14 weeks, but many others report remission only after six months or a year. Many of the people who've been on it longer strongly advocate trying for a full year before giving up. Some also recommend moving to six weeks or four weeks between infusions, based on blood levels of the drug, but I think different countries have different norms for testing those levels or not.

How are you feeling so far?

Hi gritty hope. My symptoms are random. I feel like I’m going back into a flare tonight. I’ve had bleeding again though not sure if it’s haemorrhoids. Last calprotectin was 28. I done another one today and I’m expecting it to be back up. I find the results from those more about stool consistency than inflammation. They change rapidly along with symptoms. I want entyvio to work so badly but I can’t help thinking it’s not. I don’t want to go back on steroids. I’m 4 months in and have seen random perfect stools

Hi,
For DD Symptoms quickly improved after the initial entyvio dose.
But lost its benefit close to 1year. She is taking Avsola infusion currently.


Best wishes..

Ask as many questions as you want.

Unfortunately, Entivio didn't do anything to help me. Hope you have better results.