Entyvio - How Long

[crohnsinct]

My daughter recently switched to Entyvio from Remicade (lost response). She has finished her loading doses and is due for her first maintenance dose this week. She is on an every 4 weeks maintenance schedule. So she is in her 9th week.

She is flaring badly. Has had 3 hospital admits in the past 4 weeks for a total of 14 days. She is on triple antibiotic therapy and prednisone to get her to that magical Entyvio kick in point, however, during her last admit they had a surgeon come talk to her about the possibility of a colectomy. She was discharged yesterday and seems to be struggling again.

My question is, how long did it take to kick in for you all? Did you notice gradual improvements? If so, starting when?

Also, she is getting these crazy fevers that we are chalking up to Crohn's inflammation but I think I read somewhere that some people on Entyvio complain of fevers. Does anyone have this? If so, is it just during infusion, the week after or all the time?

 

[Guerrero]

Hi crohnsinct,
I’m so sorry for your daughter and hope she’ll feel better soon.
Entyvio takes usually 3/4 months or even more to fully kick in.
I never heard of fever from entyvio, you may want to check it with her doctors.
Prednisone doesn’t help either?

How old is she? Maybe an elemental nutrition could help too till entyvio kicks in

 

[crohnsinct]

Yeah. Her GI is saying 12-26 weeks. She is getting her first maintenance dose next week.

Yeah, prednisone isn't working so well. In the hospital she was getting iv prednisone and TPN. She got discharged on 30mg oral. She is 19. I am trying to convince her to do een. She did it before and it worked like a charm but she wasn't this sick.

The waiting is a bear. I would settle for just a little sign right about now.

Thanks.

 

[Guerrero]

Yes I guess a little sign would help. You gotta be patient as the mechanism of action is slow.

 

[my little penguin]

VEDOLIZUMAB
Vedolizumab appears to have a generally slower time to response compared to other biologic agents. This may relate to the mechanism of anti-integrin therapy, with inhibition of lymphocyte gut migration taking more time to achieve therapeutic efficacy[73].
Time to response
CD: Clinical remission with vedolizumab appears to take at least 10 to 14 wk in CD. This slower onset of action of vedolizumab, compared to anti-TNF therapies for instance, was evident in the RCTs GEMINI 2 and 3 registration trials of vedolizumab comparing therapy to placebo induction and maintenance therapy in CD[74]. Clinical remission rates increased from 15% to 27% between weeks 6 and 10 while remained stable in the placebo group (12%) at these time points in GEMINI 3 (i.e., those with prior anti-TNF failure), and in GEMINI 2 there was a significant increase in clinical remission after 6 wk compared to placebo[73]. Subsequent real-world observational data have also demonstrated that clinical remission rates tend to increase from week 6 to week 14 and in one study the median time to clinical response was 19 wk[75]. Mucosal healing rates of 30% were attained after a median of 22 wk in CD in one observational study[76]. Furthermore, GEMINI 2 found that almost 40% of initial vedolizumab responders remained in clinical remission to 52 wk although clinical remission rates only became superior to placebo after 30 wk[77].
UC: Response and remission rates appear more rapid in UC than CD. At week 6 after a 2-dose induction, clinical response, remission rates and mucosal healing were significantly higher with vedolizumab than placebo (47%, 17% and 41% vs26%, 5% and 25% respectively) in one RCT[78]. Moreover, maintenance vedolizumab resulted in higher rates of clinical and endoscopic remission at week 52 than week 6 and mean partial Mayo scores continued to decline until week 52, suggesting that maximal response often takes several months.
Therapy-related factors affecting time to response
While immunomodulators appear to reduce the formation of antidrug antibodies to vedolizumab[78], the low proportion of patients who actually formed antidrug antibodies in trials might imply that combination therapy may be unnecessary and hence may not provide additional benefit to time to therapeutic response, in contrast to anti-TNF therapies[78].

From

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5643264/#!po=0.458716

Time to clinical response and remission for therapeutics in inflammatory bowel diseases: What should the clinician expect, what should patients be told?
Abhinav Vasudevan, Peter R Gibson, and Daniel R van Langenberg


So minimum of 19 weeks for most people with UC
And longer for crohns patients

End point of 12 months whether it works or not


Hope she responds soon

 

[Snitzer1]

My daughter recently switched to Entyvio from Remicade (lost response). She has finished her loading doses and is due for her first maintenance dose this week. She is on an every 4 weeks maintenance schedule. So she is in her 9th week.

She is flaring badly. Has had 3 hospital admits in the past 4 weeks for a total of 14 days. She is on triple antibiotic therapy and prednisone to get her to that magical Entyvio kick in point, however, during her last admit they had a surgeon come talk to her about the possibility of a colectomy. She was discharged yesterday and seems to be struggling again.

My question is, how long did it take to kick in for you all? Did you notice gradual improvements? If so, starting when?

Also, she is getting these crazy fevers that we are chalking up to Crohn's inflammation but I think I read somewhere that some people on Entyvio complain of fevers. Does anyone have this? If so, is it just during infusion, the week after or all the time?

Entyvio can cause chills and fever, severe diarrhea, fatigue and more flu-like symptoms and poses a remote and rare risk for PML.

Antibiotics only serve to weaken the GI tract more by creating a leaky gut.

Please get a second and if necessary a third opinion as to your daughter's options. And if her GI doctor has not put her on a low-residue (fiber) and non-dairy diet and/or has not addressed her psychological stress levels, then you may want to consider getting a new doctor.

I am still in a flareup, but there are people with IBD who have benefitted from the Carnivore diet.
Also, please look into "anti-nutrients" because they DO exacerbate GI problems.

 

[Snitzer1]

Please do a keyword search on this forum for "Entyvio side-effects" to confirm your daughter's symptoms. Also, some of the side-effects from the Prednisone can overlap with the Entyvio, especially during a Prednisone taper.

 

[JackG]

I'm about 20 weeks into Entyvio and I was feeling so good, I decided to stop taking the probiotic I've been on for years. A couple days went by and I realized my mistake in just how I was feeling. A couple more days and I was having cramping gas and diarrhea without my triggers. Then I restarted my probiotic and I could feel the difference within a day or two. The symptoms were gone and I felt a lot better.

I realize doctors regard probiotics like chiropractors. There's no regulation, no FDA, etc. But I'm here to tell you probiotics have been a major help to me and I've had Crohns long time. If your gut feels good on a given day it can help you go to work, see friends and enjoy your family. A general sense of well being elevates your mood and makes you feel better about life.

Are probiotics a miracle cure? Of course not. Like my first doc in 1982 said, "Crohn's is a tiger". I can't drink coffee, milk or dark pop, and I can't eat ice cream. But probiotics made life better.

 

[crohnsinct]

Wow JackG that is great to hear. My daughter's doc believes in probiotics. So did her last GI back east. Maybe pediatric docs are more likely to try alternative avenues to support the meds? She has also been told to take fish oil, vitamin D (that one is obvious) and turmeric. Recently the GI told her to try LiveLeaf Gut Rescue. So far probiotics and Gut Rescue didn't help her, however, he said he has had many patients experience at least some relief with frequency by using Gut Rescue. It made her worse. Probiotics did nothing.

She is at 27 weeks now and about 80% of the way there with her colonic disease. She is still on 10mg of prednisone. However, now her ideal disease has kicked up so we will be adding Entocort to calm that down but that isn't a long term solution so she may cycle on and off EEN to keep the ileum calm while we wait for a drug that has good success with both small bowel and colonic disease.

 

[JackG]

"Live Leaf Gut Rescue"? No offense, but I would say off exotic trendy stuff. Many times when I had to calm my gut down I did it by not consuming anything but Ensure, light colored jello and lots of water. Avoid all dairy and dark drinks. Be smart with vitamins and supplements. For me probiotics were in a whole different world and I learned by experience not to go cheap with them. Get the most strains and the most cultures and go to a health food store for one thats for severe disease. Here's the one I went to when I was bad and after several years on this I tried others. http://probioticpillreviews.com/lp2...iew/?msclkid=e5445928871b168c6c61048eed8898a6

 

[crohnsinct]

Yep! VSL3 is the one we tried. Back when we lived in CT and again when we moved to CA. We thought maybe we didn't give it enough time the first time so tried it again in CA but for two months. She just got worse (not the probiotics fault). Then we switched docs out here and the new doc said that bodies change and we should try it again. We figured no harm. But again it didn't work. I would be tempted to have her try them again though simply because she was on IV antibiotics for sepsis for weeks and then she was on Vancomycin for two weeks and then the triple antibiotic therapy. Probably a really screwed up micro biome.

The LiveLeaf was actually developed by physicians and studied extensively. He suggested it so we tried it but it did nothing. She got worse but whether or not it was the Gut Rescue IDK.

I asked him about a product called Restore which claims to heal the epithelial layer. He said there is a lot of interest surrounding that product in the GI community but not enough studies to back it up.

 

[my little penguin]

Vsl#3 went through changes
Changed ownership and the make up
Twice
In Jan 2019 -fda pulled the sale of vsl#3 because they had changed so much
The original is now under visobiome (original owners ) and original make up
Ds has to used the prescription strength version to see benefit

 

[Dennis212]

My daughter recently switched to Entyvio from Remicade (lost response). She has finished her loading doses and is due for her first maintenance dose this week. She is on an every 4 weeks maintenance schedule. So she is in her 9th week.

She is flaring badly. Has had 3 hospital admits in the past 4 weeks for a total of 14 days. She is on triple antibiotic therapy and prednisone to get her to that magical Entyvio kick in point, however, during her last admit they had a surgeon come talk to her about the possibility of a colectomy. She was discharged yesterday and seems to be struggling again.

My question is, how long did it take to kick in for you all? Did you notice gradual improvements? If so, starting when?

Also, she is getting these crazy fevers that we are chalking up to Crohn's inflammation but I think I read somewhere that some people on Entyvio complain of fevers. Does anyone have this? If so, is it just during infusion, the week after or all the time?

Hi crohnsinct I’m sorry about your daughter. Enyvio is a poorly studied drug for Crohns and most likely won’t work but don’t worry. It may also be time for your daughter to have surgery. There are other classes of TNF blockers like Humira and Ciniza that are more likely to work. She may also need pulse therapy of a chemo drug called Cytoxan which does put Crohns into remission, but afterwords there needs to be a medical maintenance drug given. There is also stemcell trials going on, or the treating gastro can write letters to the insurance company to get it approved since it’s using your own stemcells. There is also a special blood test for MAP bacteria that is believed to cause Crohns. Otakato pathways in NZ does this test. You simply get the some blood drawn in the blood vile and send it in a clinical pack. It takes 30 days to analyze then you get the results. If your child does map then a triple antibiotic therapy will be given. Two drugs come from American the other comes from Australia. I’ve seen my patients lives turn around and they stop taking their meds and just take the amap. So there are other medicines you can try. I’m not sure where your located, but I can give you the names of some good surgeons and tell you how you can work with the insurance company to fund you traveling to a good surgeon as well. A colectomy for Crohns isn’t a wise thing to do. If the large colon is really that bad then a temporary reversible ileostomy bag may he preformed. But after that there needs to be hard medical treatment. There is also Stelara for Crohns. I have seen that work great as well. Please let me know if you need help.