I hope it does wonders for you.I hope everyone is doing well. I will be starting Entyvio on 7/21. I had a resection in January and already have small ulcers in my ileum. Praying this works!
I hope it does wonders for you.I hope everyone is doing well. I will be starting Entyvio on 7/21. I had a resection in January and already have small ulcers in my ileum. Praying this works!
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.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
Thanks.. i feel a bit better now.. been substituing meals with modulen ibdWait and ask your doctor. I hope you feel better real soon.
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..Hang on til tomorrow and see what the Dr. says. But it seems to me that 25mg of prednisone is probably not enough.
I guess we both in the middle of this 6-10 weeks entyvio infusions and it's not working yet... Hope you'll be fine soon!Saw blood when I went to the bathroom.
Thanks . My doctor had me do blood work and a stool sample. I hope you feel better soonI guess we both in the middle of this 6-10 weeks entyvio infusions and it's not working yet... Hope you'll be fine soon!
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.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?
Have you told your doctor about your symptoms ?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?
None of those symptoms only tiredness afterward and bruising but that's because they can never get my veins. Definitely mention to doctor.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?
Yes but they didnt show much interest...Have you told your doctor about your symptoms ?
Keep us updatedAs 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???
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.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.
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 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?
Tell your doctor whst is going on.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.
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.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.
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.I have not got notice yet about when they will start doing every four weeks. Best to you.
Hi. I don't know. I am going to tag Maya 142.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.
I am glad for you, GuerreroHad 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?
An immunosuppressant like imuran or mtx??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.
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.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?
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.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
Hi Babs, i've been on entyvio for 4 months, and so far my liver is ok but I still have high calprotectin levels...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
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.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?
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.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?
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 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.
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...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.
Hoping the best for you.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...
My stomach seems upset the last few days. I see the specialist WednesdayThank you Ron. How things are going with you?
Prayers and support.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....
I think it takes a while.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.
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...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.
You said you need bowel rest. Has your doctor talked about TPN?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
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.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