Entyvio (Vedolizumab) Support Group

Crohn's Disease Forum

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I had the same thing happen within months of my surgery in 2010. Humira chased away the post surgical crohn's inflammation, no problem. Entyvio should do the same.
 
Thanks DougUte, have you had to have surgery again since? I have tried Humira and Cimzia, LDN and pretty much everything except Entyvio and Remicade. But, that was before surgery, with a lot of strictures and scar tissue, so maybe this will be different :)
 
momofzach said:
Thanks DougUte, have you had to have surgery again since? I have tried Humira and Cimzia, LDN and pretty much everything except Entyvio and Remicade. But, that was before surgery, with a lot of strictures and scar tissue, so maybe this will be different :)
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I have not had a second surgery. Humira did stop working over time, but my GI is really on top of things and we made the switch to Entyvio last February.
 
Had my third injection this week, and i still feel bad
Especially nausea, and almost constant impression i have my throat closed. It's probably because I have inflammed strictures in my small bowel... i'm also taking 25 mg of prednisone that i should taper down, but considering my symptoms and that my fecal calprotectin went up to 700, i think i should take more than 25mg i guess. What do you think guys?
I guess my doctors won't answer till monday now...
 
Hang on til tomorrow and see what the Dr. says. But it seems to me that 25mg of prednisone is probably not enough.
 
DougUte said:
Hang on til tomorrow and see what the Dr. says. But it seems to me that 25mg of prednisone is probably not enough.
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i'm a bit confused, they told me to increase it only if nausea and abdominal pains comes back another time after i eat... but i'm afraid to eat any solid food now... maybe I'll give a try tomorrow but i hope i won't feel bad otherwise i'll have issues at work etc..

you been in prednisone cycles yourself Doug?
 
Guerrero said:
i'm a bit confused, they told me to increase it only if nausea and abdominal pains comes back another time after i eat... but i'm afraid to eat any solid food now... maybe I'll give a try tomorrow but i hope i won't feel bad otherwise i'll have issues at work etc..

you been in prednisone cycles yourself Doug?
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I was several years ago, but they put me on Humira and that got me out of it. Hopefully Entyvio can do that for you.
 
Reading some old messages here I found out some people reported nausea with Entyvio.
I'm having that doubt now if my nausea is due to CD inflammation or Entyvio... I never had this kind of nausea before I started Entyvio, so unless inflammation has worsen a lot i'm wondering if it could be a reaction to the injections...

Is there someone else having symptoms like nausea, throat tightness and difficulty to digest solid food after Entyvio injections?
 
I'm so in love with this new medication Vedolizumab it's my wonder drug now. Went crazy and had ice cream since I was doing so good.....ya dumb ass.
 
Guerrero said:
Reading some old messages here I found out some people reported nausea with Entyvio.
I'm having that doubt now if my nausea is due to CD inflammation or Entyvio... I never had this kind of nausea before I started Entyvio, so unless inflammation has worsen a lot i'm wondering if it could be a reaction to the injections...

Is there someone else having symptoms like nausea, throat tightness and difficulty to digest solid food after Entyvio injections?
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Have you told your doctor about your symptoms ?
 
Guerrero said:
Reading some old messages here I found out some people reported nausea with Entyvio.
I'm having that doubt now if my nausea is due to CD inflammation or Entyvio... I never had this kind of nausea before I started Entyvio, so unless inflammation has worsen a lot i'm wondering if it could be a reaction to the injections...

Is there someone else having symptoms like nausea, throat tightness and difficulty to digest solid food after Entyvio injections?
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None of those symptoms only tiredness afterward and bruising but that's because they can never get my veins. Definitely mention to doctor.
 
As I posted weeks ago, I've had pretty significant side effects from Entyvio and I didn't believe it was making a bit of difference. Well, it is not. My colonoscopy showed active Crohn's disease and the ulcerations were the same if not a bit worse. The office advised the biopsy showed active Crohn's but then they also moved my appointment up by nearly 5 weeks. Kind of worried about why I must come in so urgently. --I probably wouldn't have noticed but when I offered to come in on a Friday a week and a half out, I was advised I needed to come in now. So...I'm taking off work half of a day on Wednesday.

EDITED: It might be important to mention that I've had active Crohns since January of 2016. I haven't had remission yet so what's the rush???
 
katiesue230 said:
As I posted weeks ago, I've had pretty significant side effects from Entyvio and I didn't believe it was making a bit of difference. Well, it is not. My colonoscopy showed active Crohn's disease and the ulcerations were the same if not a bit worse. The office advised the biopsy showed active Crohn's but then they also moved my appointment up by nearly 5 weeks. Kind of worried about why I must come in so urgently. --I probably wouldn't have noticed but when I offered to come in on a Friday a week and a half out, I was advised I needed to come in now. So...I'm taking off work half of a day on Wednesday.

EDITED: It might be important to mention that I've had active Crohns since January of 2016. I haven't had remission yet so what's the rush???
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Keep us updated
 
I'm starting Entyvio soon and I'm a bit apprehensive. My doctor gave me 5 choices in June (Humira, Remicade, Entyvio, a new study he is conducting and one other drug that I can't recall). I declined the first two, as injecting myself was not in my interests and opted for the study but was ineligible after 2 weeks of doing an electronic diary/bloodwork. So my Plan B was Entyvio. I've just been accepted for financial assistance as 1 year costs over $20,000 CAD otherwise I don't know how I could afford it.

The thing is, I don't have many symptoms so I'm not sure why I'm going on the biologics now. I had a bad spell in the fall of 2015 with 19 symptoms and since my recovery, I've just had urgency/frequency issues for the past 1.5 years that I can manage by altering my lifestyle. My energy levels are high, I'm at normal weight again, have no joint pain but apparently my recent colonoscopy reveals that my Crohn's is "moderately severe"...so it's time for the biologics. I just hope they don't make me feel worse because my spirits are high and my mobility is normal. I've been reading people's experiences with their first couple of infusions and they all seem to vary, but the side effects don't appear pleasant. I never want my joint pain to return ever again. It really crushed my spirit when I experienced it last time.
 
Hi Archeogirl,
Keep that positive spirit. I started entyvio 2 months ago and no joint pain... i had some nausea but not sure it was caused by entyvio.

I think you made a good choice as you feel ok now and entyvio can take time to kick in. Also the mechanism seems smarter and less risky than others anti tnf as it regulate the gi tract only and not the whole body.
 
Archeogirl said:
I'm starting Entyvio soon and I'm a bit apprehensive. My doctor gave me 5 choices in June (Humira, Remicade, Entyvio, a new study he is conducting and one other drug that I can't recall). I declined the first two, as injecting myself was not in my interests and opted for the study but was ineligible after 2 weeks of doing an electronic diary/bloodwork. So my Plan B was Entyvio. I've just been accepted for financial assistance as 1 year costs over $20,000 CAD otherwise I don't know how I could afford it.

The thing is, I don't have many symptoms so I'm not sure why I'm going on the biologics now. I had a bad spell in the fall of 2015 with 19 symptoms and since my recovery, I've just had urgency/frequency issues for the past 1.5 years that I can manage by altering my lifestyle. My energy levels are high, I'm at normal weight again, have no joint pain but apparently my recent colonoscopy reveals that my Crohn's is "moderately severe"...so it's time for the biologics. I just hope they don't make me feel worse because my spirits are high and my mobility is normal. I've been reading people's experiences with their first couple of infusions and they all seem to vary, but the side effects don't appear pleasant. I never want my joint pain to return ever again. It really crushed my spirit when I experienced it last time.
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Ok so it sounds like you are most worried about the side effects? I have been on entyvio since this past November so pretty close to a year. I will tell you what I have experienced. First let me say that any ill feelings I would have didn't start until many months of using the drug. The very first side effects i noticed were incredible headaches, I mean like the not getting out of bed kind. Next I noticed the joint pain, which I thought was just an arthritis age thing. I'm 36 so I'm kind young still. And of course there was feeling tired and fatigued I would say almost right away, from the start. But the one side effect that upset me the most was extreme hair loss. I was not going bald naturally, I had a good head of hair. This side effect took the most time to show signs of. This side effect has been documented with many other patients using this drug. And all I can say for me this was very depressing. Unfortunately the entyvio has not been working for me as I have had 2 pretty severe flares since starting. This month on the 1st I had a surgeon consult and it's now time for my second surgery, also stopping the entyvio. Surgery is no fun but at least I can see a brighter future for myself, at least for a little while. So I hope I helped you with any questions you may have had. Thanks, and hang in there.
 
Hi Timothy,

I feel very sorry about all these bad side effects. I didnt imagine a medicine which regulates t cells in the gut could bring hair loss. How the doctors explain that?

Thanks
 
katiesue230 said:
I have been asked to consider Entyvio. I'm really concerned about the "inactive" ingredients. One may be an irritant to the stomach and there is a ton of sucrose--actually more than the actual active ingredient. It is known to cause weight gain and I just went through that with Humira. All of my symptoms were masked and I appeared to be doing well when on the inside, I was really inflammed and developing ulcers.

Can anyone tell me a positive story about Entyvio that has been on it awhile?
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Sorry to quote a very old message, but i'm very curious to know what is the inactive ingredients that can be irritant for the stomach?

I'm experiencing stomach issues since I started prednisone and entyvio.
 
Guerrero said:
Sorry to quote a very old message, but i'm very curious to know what is the inactive ingredients that can be irritant for the stomach?

I'm experiencing stomach issues since I started prednisone and entyvio.
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Tell your doctor whst is going on.
 
Good news at least it may work better and faster. I'm also on the 4 weeks plan. How have you been these last weeks?

Had my 4th entyvio this week. I feel slightly better compare to last month but i'm waiting for bloodworks and go off prednisone to make any conclusion...

My GI repeated not much should be expected before the 5th injection.
 
Guerrero said:
Good news at least it may work better and faster. I'm also on the 4 weeks plan. How have you been these last weeks?

Had my 4th entyvio this week. I feel slightly better compare to last month but i'm waiting for bloodworks and go off prednisone to make any conclusion...

My GI repeated not much should be expected before the 5th injection.
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Recently, I have had some bàd symptoms. Besides the change in how often I take Entyvio he has put me on prednisone and wants a colonoscopy.
 
ronroush7 said:
I have not got notice yet about when they will start doing every four weeks. Best to you.
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Ron, I hope you don't have any issues with your insurance company. I am on Entyvio every 8 weeks because my insurance company would not allow me to go on Humira every week. Reason: The FDA has not approved weekly injections for Humira.
 
Hi Timothy,

thank you for sharing your experience with Entyvio. That sounds quite alarming (hair loss, joint pain, extreme fatigue). I hope your doctor will consider these side effects and change your medications. Hang in there!

I just had my first infusion yesterday and so far so good (no side effects). I haven't felt any changes with my body (good or bad). But I am aware that side effects may develop in the following months.

Hoping for the best! :)
 
Hi everyone I have a quick question. Currently I am on remicade every 6 weeks but they think I may be building anitbodies to it so it may be time to start considering another form of treatment. I have Crohn's but have also been diagnosed with psoriasis and ankylosis spondylitis, since entyvio is specialized to work in the gut will it also work for these symptoms. Does anyone else have any experience with this? I would rather be one one medication to treat all these but I understand that may not always be possible.
 
Caitlyn336 said:
Hi everyone I have a quick question. Currently I am on remicade every 6 weeks but they think I may be building anitbodies to it so it may be time to start considering another form of treatment. I have Crohn's but have also been diagnosed with psoriasis and ankylosis spondylitis, since entyvio is specialized to work in the gut will it also work for these symptoms. Does anyone else have any experience with this? I would rather be one one medication to treat all these but I understand that may not always be possible.
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Hi. I don't know. I am going to tag Maya 142.
 
My daughter also has Ankylosing Spondylitis and Crohn's. Entyvio will not treat AS unfortunately. For AS, your best bet is either another anti-TNF (Humira, Simponi, Cimzia are all approved for AS, Humira and Cimzia are approved for Crohn's and Simponi is approved for UC) or Stelara.

Stelara is currently in trials for AS, but is approved for Crohn's. I will say that my daughter has very aggressive AS and Stelara was not recommended for her, because her rheumatologist (and the many other rheumatologists we consulted) have not had good experiences with it for AS. Her AS affects her lumbar spine, hips and SI joints as well as many peripheral joints (knees, heels, ankles, elbows, fingers, wrists, shoulders, ribs) etc.

It is in Phase III trials though. It might just be her specific case. Her AS is MUCH worse than her Crohn's and has been very hard to treat.

My daughter did try Entyvio, but it was in addition to another biologic. Her GI was very hesitant to try two biologics, but because her AS does not respond to anti-TNFs, we couldn't treat both diseases with one drug.

For AS, the best treatment is biologics. If it were my kiddo, I would go with an anti-TNF over Entyvio. AS can cause a lot of joint damage and you want to prevent that.

My husband also has AS and was diagnosed long before biologics existed. The only treatment at the time was NSAIDs. He has a LOT of damage to his joints, including fully fused SI joints, a partially fused spine, 5 hip replacements etc.

I say this not to scare you, just to point out that AS is also a serious disease and needs to be treated as such.
 
Thank you for all the information. I have tried and failed humira a few years back. It is what caused my onset of AS, from what I know I have a mild case but even mild it is more painful than my crohns by a long shot. It tends to affect my sacral spine along with my sternum and intracostal ribs.
Methotrexate seemed to help with both but my liver enzymes started to change quickly. I don't know what they will want to do from here, I went to UCSF about a year and a half ago and they were recommending stelara if remicade failed. They said if I failed two of the TNF inhibitors then it was more likely to have poor results on the others.
The other interesting fact for me is that UCSF is close by, they are in phase three clinic trials to use stem cell transplants to help with crohns. One of the requirements is to fail two TNF alpha inhibitors so I may talk to them about that also.
 
Stelara may be a good choice. It wasn't recommended for my daughter, but it is already approved for psoriatic arthritis, which is closely related to AS. And it is in Phase III trials for AS, so it must work to some degree.

I also want to emphasize that my daughter's case is unusual and obviously, everyone is different.

Another thing we have heard is that the Crohn's dosing of Stelara is also MUCH higher than the arthritis dosing, and it's possible that the dosing for arthritis is just too low, which is why the rheumatologists we have seen haven't had enough success with it.

For psoriatic arthritis, the dose is 45 mg every 12 weeks. For Crohn's, there is an IV loading dose and after that, it is 90 mg every 8 weeks. So there is quite a difference.

UCSF has a great AS center. There is an excellent researcher and doctor there - Dr. Gensler. I would try and see her (if you aren't seeing her already). She does a lot research for AS.

I don't know if stem cell transplants would work for AS as well as Crohn's. That is definitely something to discuss with your GI and rheumatologist. Also know that sometimes it's hard to get into trials if you have more than one disease (which is very unfair!). Trials have been mentioned for my daughter many times but because she is so complex, she never qualifies.

I will tag my little penguin has a son with juvenile spondyloarthritis, who has just started Stelara.

Methotrexate generally does not work for spinal (axial) disease, but again, everyone is different. Sulfasalazine is also sometimes used for AS but generally doesn't work very well when the spine is involved. Your best bet is probably another biologic, whether it is Stelara or a third anti-TNF.

Good luck!!
 
Ds just had his first loading dose of Stelera so way too early to tell
We were told after a while your body has just seen so much anti tnf
That it wasn't worth trying a third one for ds
To just hold onto the third one till later if needed
Ds has very bad JSpA without biologics
So really want this one to work
He also takes mtx which is helping some but not enough by itself
 
Had my 4th injection 2 weeks ago and I start to feel better... I gained weight and i'm now back to my normal weight.

I hope this impression will be confirmed in my next exams... had a lot of up and down these last months, especially last month with constant nausea and weight drop... i'm also stopping prednisone so i hope entyvio really started to work.

Any other member here that started to feel better after the 4th injection?
 
Guerrero said:
Had my 4th injection 2 weeks ago and I start to feel better... I gained weight and i'm now back to my normal weight.

I hope this impression will be confirmed in my next exams... had a lot of up and down these last months, especially last month with constant nausea and weight drop... i'm also stopping prednisone so i hope entyvio really started to work.

Any other member here that started to feel better after the 4th injection?
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I am glad for you, Guerrero
 
Talked to my new GI doctor. He wants me to be on another medication with the Intivio says it will work longer.....not sure about this hate taking so many medications.
 
Don't remember have to ask husband.....was too upset to think that day....really don't want another med. Having headaches since my infusion non stop.....sigh 3rd day hope tomorrow is better.
 
Thanks ya doing better. Needed to spend time with my daughter and grand kids so only time I'm on the computer is if cartoons are on it lol. I'm really tired though, 7, 4 and 3 are hard to keep up with for sure.
 
Anyone could explain why a treatment like entyvio could not work for some people?
As it blocks the movement of the gut-directed white blood cells into the GI tract, how could the bowel still get inflammed with this treatment?
 
Guerrero said:
Anyone could explain why a treatment like entyvio could not work for some people?
As it blocks the movement of the gut-directed white blood cells into the GI tract, how could the bowel still get inflammed with this treatment?
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Unfortunately no treatment works for everyone. For some people, the inflammation is just too severe for the medications to change things enough to avoid surgery or to gain complete remission. Vedo only seems to work on a very specific part of the gut, so for people with Crohns disease, it may be that the inflammation is too widespread for the Vedo to work.

I have been on vedo for almost a year now, and I still get symptoms a fair amount of the time, but I am better than I was before I started it, so it is having some impact. The issue is that my Crohn's is located on the very edge of where Vedo is targetted at.

It's also known to be a slower acting drug than many of the other treatments. I have been told that its not unheard of for people to need a year or more on it before they reach remission, and for some its just keeps them steady rather than inducing remission on its own.

Vedo works by trying to stop new inflammation forming through changing the way that white blood cells work. It takes a long time for the "old" white blood cells to die, and its only once the old cells are all dead and the new ones reach the gut that it really starts to work. For some people, this period is too long as their condition is too unstable and they need emergency treatment. The deeper into the lining the inflammation goes, the longer it takes for the body to repair itself.

Another factor is that for some people the infusions just don't last for the gap between them. If the infusion wares off between doses, it means that it doesn't suppress the cells in the desired way, so inflammation continues to occur. Infusions can be brought closer together in some cases but this isn't always appropriate due to people developing anti-bodies or suffering side effects.

As well as all this, sometimes the side effects are just too much to cope with. Some people suffer badly with headaches after infusions or have problems with their liver or kidneys and this makes the medication unsuitable.

Despite all of this, I still absolutely think its worth a try if people are offered. It generally has less serious side effects than the other biologics, and my doctors all tell me that it has a very good long term safety profile. I have heard stories where it has really transformed peoples lives and for me it has at least stopped me from detriorating and given me some quality of life. Unfortunately there are no garuntees with this illness and people never know what treatments will work for them, but there are more medications coming out all the time and I know from my IBD nurse that they are trying to create a version of Vedo that will work on the whole gut which would be a massive step forward.
 
Thanks for your reply valleysangel

I wanted to go further the common comments like everybody is different , so this medication can be effective for some people and not for others...
You bring some very interesting points... but I have still some doubts..

When you say it seems to work only on a very specific part, in which part it is targeted to work then? do you mean the lining part or his extent? And in your case where CD is located?

I understand very much the fact that it takes a long time to work, as it changes the mechanisms of the new T-cells only and not the old ones, and some people may still need surgery as damages may be still too important ok.. but I don't understand why in some people it would not be effective like at all ... is it possible??? I have the sentiment it must be at least a little effective if it really binds the white cells in the gi tract, or could someone explain how come new white cell would still create inflammation?

What about this new version of entyvio working on the whole gut? any website link?
 
Vedo is generally best for people with inflammation in the colon, which is why it works better in people with UC than it does with Crohn's patients. I think because of the mechanism of the drug, it's better for surface inflammation because it heals faster but as far as I'm aware it has been successfully used to treat people who have deeper inflammation too, it just takes longer. In my case , I have had the end of my small bowel/beginning of the large and my Crohn's has returned in the join.

In terms of why it works for some and not others I'm afraid that's the same kind of answer for all Crohn's /UC medications. Unfortunately, people always respond differently to different medications no matter what the condition or treatment. Even things as basic as painkillers can have different levels of therapeutic effect in different people. Obviously I'm not a doctor so I can only repeat what my medical team have told me and what I have read in my own research, but there can be a number of reasons why a medication will work for some and not others.. for example, different people will metabolise the drugs in different ways. It could be that the drug is altering the t-cells but because the patient is already very unwell it's just too late to give the drug long enough to reach a therapeutic level in that individual. It could be that there are actually different types of Crohn's or UC,caused by slightly different mutations or slightly different triggers and therefore it will react to different treatments. Unfortunately there are still a lot of unknowns in medicine, for example we don't really know why the same chemo drug would cure one person's cancer but do nothing for another person. It's frustrating as patients I know , but a lot of the time all doctor's can do is give us they're best guesses with regards to why something will or won't work. A common pattern in the UK is that people with Crohn's disease are only offered vedo when they have exhausted all other medications so they've potentially had active inflammation for years without adequate treatment ,which is harder to get back on top of than another person who's maybe only had inflammation a few weeks. Some people seem to have particularly drug resistant types of Crohn's , and no matter what is tried it never quite seems to control it, and they don't really know why that is yet, so it's possible these people have some kind of mutation of the condition that makes it resistant to immune therapy. These are all just theories of course , but I don't think a definitive answer will come until they know the true underlying cause of IBD.

As for the newer medications , I only know what my IBD nurse has told me and as far as I'm aware they're still figuring out if it would be possible to extend the effect throughout the gut so there won't be any websites or anything like that at the moment. My ibd nurse just said that in the next few years they may be developing something along that line.
 
I'm still in love with this medication. It is so strange to actually have a normal bowel movement....it takes so damn long lol.... as weird as that is....I know TMI. Just hoping next time there wont be headaches.
 
Its been 14 weeks i've started entyvio... i feel better but my calprotectin came out high: 400... I was around 700 2 months ago though.

Please guys, what do you think about it? Have you had your levels checked after 14 weeks and how was it?
 
Hi guys, is there anyone with calprotectin tested regularly that could comment his results and mine?

I'm curious to know if I should be patient or do something else to put it down... i'm trying turmeric too..
 
Hi everyone
I too am on Entyvio for1 year and 10 months with great success. In the beginning it was a long haul and it wasn't working after the allotted dosing but doctor and I figured I should just give it one more time and it worked!
Now Im experiencing high liver elevations for quite a few month and after my last dose 11/2 weeks ago my Alt skyrocketed to 185 and AST high and AST high.Have appt. with liver specialist once again whereby he did fibroscan and found my liver to have stage 1 scaring. Said to see him in a year unless the liver tests keep elevating which they did so have liver doc appt next week. I'm so scared it may be from the Entyvio or something more serious. Already had 2 surgeries(Crohn's) whereby at least 30 feet of my intestines removed. Been on everything except the biologics because I am precancerous to certain cancers whereby I have to be monitored and they can set them off. Anyone else have this problem being on Entyvio? I'm afraid if it's the Entyvio they said my last resort is Stelera but have read that it can cause cancer so I don't know what to do. I am running out of options and petrified.I've had Crohn's for 30 years...almost all my life so once again another obstacle. Many gastroenterologists wouldn't treat me because of all my complications but seeing gastro in NYC. Anyone else have a liver problem on Entyvio?
I so admire all of you and pray for our community every night. You are all my heroes!
Lot's more to my story but this is way to long as is.:)
Thank you all in advance!
Babs
 
itsmebabs said:
Hi everyone
I too am on Entyvio for1 year and 10 months with great success. In the beginning it was a long haul and it wasn't working after the allotted dosing but doctor and I figured I should just give it one more time and it worked!
Now Im experiencing high liver elevations for quite a few month and after my last dose 11/2 weeks ago my Alt skyrocketed to 185 and AST high and AST high.Have appt. with liver specialist once again whereby he did fibroscan and found my liver to have stage 1 scaring. Said to see him in a year unless the liver tests keep elevating which they did so have liver doc appt next week. I'm so scared it may be from the Entyvio or something more serious. Already had 2 surgeries(Crohn's) whereby at least 30 feet of my intestines removed. Been on everything except the biologics because I am precancerous to certain cancers whereby I have to be monitored and they can set them off. Anyone else have this problem being on Entyvio? I'm afraid if it's the Entyvio they said my last resort is Stelera but have read that it can cause cancer so I don't know what to do. I am running out of options and petrified.I've had Crohn's for 30 years...almost all my life so once again another obstacle. Many gastroenterologists wouldn't treat me because of all my complications but seeing gastro in NYC. Anyone else have a liver problem on Entyvio?
I so admire all of you and pray for our community every night. You are all my heroes!
Lot's more to my story but this is way to long as is.:)
Thank you all in advance!
Babs
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I've only been on Entyvio for about 8 months now. My blood work all came back good for a change. Saying prayers for healing. I'm thinking of going back on the Jordin Rubin diet. It's really strict but it really helped me last time.
 
itsmebabs said:
Hi everyone
I too am on Entyvio for1 year and 10 months with great success. In the beginning it was a long haul and it wasn't working after the allotted dosing but doctor and I figured I should just give it one more time and it worked!
Now Im experiencing high liver elevations for quite a few month and after my last dose 11/2 weeks ago my Alt skyrocketed to 185 and AST high and AST high.Have appt. with liver specialist once again whereby he did fibroscan and found my liver to have stage 1 scaring. Said to see him in a year unless the liver tests keep elevating which they did so have liver doc appt next week. I'm so scared it may be from the Entyvio or something more serious. Already had 2 surgeries(Crohn's) whereby at least 30 feet of my intestines removed. Been on everything except the biologics because I am precancerous to certain cancers whereby I have to be monitored and they can set them off. Anyone else have this problem being on Entyvio? I'm afraid if it's the Entyvio they said my last resort is Stelera but have read that it can cause cancer so I don't know what to do. I am running out of options and petrified.I've had Crohn's for 30 years...almost all my life so once again another obstacle. Many gastroenterologists wouldn't treat me because of all my complications but seeing gastro in NYC. Anyone else have a liver problem on Entyvio?
I so admire all of you and pray for our community every night. You are all my heroes!
Lot's more to my story but this is way to long as is.:)
Thank you all in advance!
Babs
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Hi Babs, i've been on entyvio for 4 months, and so far my liver is ok but I still have high calprotectin levels...

I hope you'll be fine soon and won't need to stop enyvio. I'm sure your doctors will find you good options anyway.

Let us know how your next appoint goes.
 
Hi Babs, I have only had the first three doses of Entyvio, and already my liver enzymes are somewhat elevated. My integrative health doctor told me to take Taurine 1000mg and Himalaya LiverCare twice a day, so I am doing that, but have not been retested yet to see if it's working. Best of luck to you, I know it's scary!
 
Thank you Guerrero and momofzach. Guerrero it may take awhile longer for Entyvio to kick in with your elevated Calprotectin to go down. Mine did go down after awhile but we are all different but hope yours goes down too. Seeing liver specialist on my birthday of all days and will keep you posted. And with this damn Disease nothing sounds crazy. Let me know how the Taurine and LiverCare works on next bloodwork. I so wish everyone well.
Thank You so much!
 
And GI Jane thanks so much for responding. So glad that your bloodwork came back good. What's making you go back on the Jordin Rubin diet?
 
Feeling sluggish and was having some issues sliding back into my sugar cravings....and addicted to chips again.
 
Hi guys, very bad news, my calprotectin bounced back to 1100... was 400 last month and i had my 6th infusion of entyvio this week (every 4 weeks). I'm afraid it's not working.... what do you think? Any similar experience to share?
 
Guerrero said:
Hi guys, very bad news, my calprotectin bounced back to 1100... was 400 last month and i had my 6th infusion of entyvio this week (every 4 weeks). I'm afraid it's not working.... what do you think? Any similar experience to share?
Click to expand...

I think I am in the same boat. Entyvio for two years now, switched to monthly doses in September. Fistulas ANGRY. Lots of blood and mucous and frequent BMs. Just started tracking FCP but it was 900 in August. See what happens after my dose on Tuesday.

I’m afraid I’m in big trouble. Have tried EVERY other drug on the market. Have you tried Stelara yet if Entyvio fails.
 
Guerrero said:
Hi guys, very bad news, my calprotectin bounced back to 1100... was 400 last month and i had my 6th infusion of entyvio this week (every 4 weeks). I'm afraid it's not working.... what do you think? Any similar experience to share?
Click to expand...

It did take about 8 months to take effect for me, I think and a year for it to fully kick in. Might still be time for it to work for you.
 
lgpcarter said:
I think I am in the same boat. Entyvio for two years now, switched to monthly doses in September. Fistulas ANGRY. Lots of blood and mucous and frequent BMs. Just started tracking FCP but it was 900 in August. See what happens after my dose on Tuesday.

I’m afraid I’m in big trouble. Have tried EVERY other drug on the market. Have you tried Stelara yet if Entyvio fails.
Click to expand...

I hope the switch to monthly doses will be effective for you... there is good chances it will be as it worked the first year, so maybe it's a matter of finding the right dose now.

I didnt try stelara nor infliximab... i was on humira before. Stelara will be available in 6 months where i live, the plan may be to switch to it or infliximab if entyvio fail on me but I also risk surgery as I have strictures and had important bleeding from my TI...
 
lgpcarter said:
It did take about 8 months to take effect for me, I think and a year for it to fully kick in. Might still be time for it to work for you.
Click to expand...

I hope you are right... had the ferling i was doing better these last weeks.. but the blood work and fcp say the opposite.. I was also trying natural supplements like curcumin, ginger etc... I feel really disapointed...
 
Guerrero said:
I hope the switch to monthly doses will be effective for you... there is good chances it will be as it worked the first year, so maybe it's a matter of finding the right dose now.

I didnt try stelara nor infliximab... i was on humira before. Stelara will be available in 6 months where i live, the plan may be to switch to it or infliximab if entyvio fail on me but I also risk surgery as I have strictures and had important bleeding from my TI...
Click to expand...
Hoping the best for you.
 
My gut is growling a lot these last weeks, do you usually consider it as a symptom of something going wrong or not?

Also i'm trying to quit omeprazole but i'm having stomach issues again...

Not sure if it's crohn's related. For sure this Entyvio is a long journey before it really kicks in. I still hope it will work, but i'm starting to have some doubts...
 
Going for my next infusion on Wednesday....wish me luck they stick me 1st time....well I'd be happy with 3rd and not 12th.....sigh....
 
Does anybody know if Entyvio can cause Kidney problems? My labs came back and show an elevated kidney enzymes. PCP thinks it is a result of my diabetes but I am finding it very interesting that it shows up within months of being put on Entyvio.
 
Ya Kidney and liver issues can happen. Mine go up some and then back down. Just had my 6 infusion I think.....soooooo tired and really itchy this time which found out is a side affect too.....but hey it's working not having to run to bathroom all of the time.
 
For anyone who switched from every 8 weeks to every 4 - did you notice a difference right away? Like, it was just not lasting quite long enough but shortening the did the trick?

I've had infusions in Aug, Sept and Oct and I don't think things are getting any better.
 
lgpcarter said:
For anyone who switched from every 8 weeks to every 4 - did you notice a difference right away? Like, it was just not lasting quite long enough but shortening the did the trick?

I've had infusions in Aug, Sept and Oct and I don't think things are getting any better.
Click to expand...
I think it takes a while.
 
lgpcarter said:
For anyone who switched from every 8 weeks to every 4 - did you notice a difference right away? Like, it was just not lasting quite long enough but shortening the did the trick?

I've had infusions in Aug, Sept and Oct and I don't think things are getting any better.
Click to expand...

I'm afraid it may be slow in that case too, but I'm not sure as I have no direct experience of a switch with entyvio... when I switched to a weekly humira shot though, my doctor said it made sense to check if it worked 6 months later...

I hope someone can share experiences with entyvio.
 
Hi all. I'm 38 female. Diagnosed with Crohns in 2003 at the age of 23. I'm 38 now. Since then they removed 13 inches of intestine including my terminal ilieum. GB removed and gastroperesis at 30%. Perianal Crohns started in the mid 2000s. Dealt with it on my own until Humira sent me into remission. Came off of Humira due to infections i couldn't fight. A yr later fistulas are abundent.ive had 5 surgeries since April for abscess drainage. I have 2 setons placed and I'm in hell. I'm on entyvio but I feel so sick I don't know if it's working. I've taken Remicade, cimzia, humira, now this. My only other option is Stratera. So I have 3 open wounds that drain non stop. I need bowel rest and the Dr mentioned a colostomy. I've researched everything and if I can get my life back I'll do anything. Just wondering if anyone has perianal Crohns. People shy away from talking about it but I need someone that understands. Thanks all
 
Jnaby0808 said:
Hi all. I'm 38 female. Diagnosed with Crohns in 2003 at the age of 23. I'm 38 now. Since then they removed 13 inches of intestine including my terminal ilieum. GB removed and gastroperesis at 30%. Perianal Crohns started in the mid 2000s. Dealt with it on my own until Humira sent me into remission. Came off of Humira due to infections i couldn't fight. A yr later fistulas are abundent.ive had 5 surgeries since April for abscess drainage. I have 2 setons placed and I'm in hell. I'm on entyvio but I feel so sick I don't know if it's working. I've taken Remicade, cimzia, humira, now this. My only other option is Stratera. So I have 3 open wounds that drain non stop. I need bowel rest and the Dr mentioned a colostomy. I've researched everything and if I can get my life back I'll do anything. Just wondering if anyone has perianal Crohns. People shy away from talking about it but I need someone that understands. Thanks all
Click to expand...
You said you need bowel rest. Has your doctor talked about TPN?
 
Jnaby0808 said:
Hi all. I'm 38 female. Diagnosed with Crohns in 2003 at the age of 23. I'm 38 now. Since then they removed 13 inches of intestine including my terminal ilieum. GB removed and gastroperesis at 30%. Perianal Crohns started in the mid 2000s. Dealt with it on my own until Humira sent me into remission. Came off of Humira due to infections i couldn't fight. A yr later fistulas are abundent.ive had 5 surgeries since April for abscess drainage. I have 2 setons placed and I'm in hell. I'm on entyvio but I feel so sick I don't know if it's working. I've taken Remicade, cimzia, humira, now this. My only other option is Stratera. So I have 3 open wounds that drain non stop. I need bowel rest and the Dr mentioned a colostomy. I've researched everything and if I can get my life back I'll do anything. Just wondering if anyone has perianal Crohns. People shy away from talking about it but I need someone that understands. Thanks all
Click to expand...

Our stories are fairly similar, though I quit Humira because it didn't work, and neither did Simponi. I've done Stelara, but not Cimzia (not available in Canada for Crohn's and my GI doesn't think it will be). Had many good years n Remicade, went off to get pregnant and then had a reaction and loss of response when I tried to go back on. I am 37, with Crohn's for 17 years.

Friggin' perianal disease is terrible. My GI just upped my Entyvio dose to monthly to try to get fistulas to heal. No evidence to suggest this is actually going to work, but can't hurt and not really any other options at this point. It doesn't seem to be working, fistulas are as angry as ever - 1 seems to be the biggest problem at the moment, but hard to tell exactly what is going on down there. Other bowel symptoms also seem to be ramping up as well, so getting close to time to move on from Enytvio and see if there are any trials happening that I can get in on. I am not quite ready to consider an ostomy yet, though I have no doubt one will be necessary someday.

That being said, I will consider it when I have run out of other options. When I did discuss it with my GI and then with the surgeon who did my resection last year, they indicated it would likely be a permanent one. I am fairly sure that there are people here who have had temporary ostomies to allow their fistulas to heal that they later had reversed. Check the Fistula subform on the Surgery thread to find them.

In terms of the Entyvio - it took 8 months before it took full effect for me. I was on prednisone while I waited for it to kick in. Are you on anything else along with the Entyvio? I am also taking Cipro and Flagyl, which help keep the perianal inflammation down and the fistulas open and draining.

I have no experience with TPN, so I can't comment on that.

All that to say you are definitely not alone in dealing with perianal disease and it really really sucks.
 
Hi. I'm new here. I have UC (pancolitis Dx 2008). I've been on most meds out there. All the 5-ASA's which caused exacerbation and then pancreatitis x2. Imuran then also caused pancreatitis for the third time. Tried Sulfasalazine and others that caused more issues. I then did three years of Remicade until I became suddenly severely sick after the last infusion I ended up doing because it turned out to be drug-induced lupus. Then did Humira for a year and a half until the docs (GI and Rheumy) determined it was also causing DIL.
I began Entyvio in July 2015. Everything was going really well and I was happy with the results. I was controlled with bowels and doing better than the Remicade or Humira ever did. My only complaint was the bad low back, hip and knee pain that was almost constant and fatigue for up to a week or so after infusions. My GI (UCSF) said it was because of the way the med is designed to go straight to the gut and the disease causes the joint pains and inflammation. I couldn't do the other med that many do with their Entyvio because of the issues Ive had with meds and drug induced pancreatitis.
I had my latest Entyvio infusion three weeks ago and suddenly have been struggling ever since. Extreme fatigue (more than the usual after infusion fatigue) and my muscles and joints have been weak and painful along with a few other symptoms. It truly gives me flashbacks of DIL. I talked to my doctor and he ordered labs to check the Entyvio blood count and for Entyvio antibodies. Has anyone else had this test done from Entyvio? I've done it for Remicade but not heard of this one. I talked to my GI nurse and she said I could only do the test at UCSF because other hospital in the area don't even offer or do it.
Waiting for results but just checking to see if others have developed Entyvio antibodies? Thanks
 

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