Entyvio (Vedolizumab) Support Group

[sully1102]

Had my 2nd infusion two weeks ago, 3rd is scheduled for the first week in September.

As it was explained to me, it really takes 12-15 weeks for the full effectiveness to present. With that being said, I've noticed some minor "break-through" symptoms have been clearing up. Unfortunately, there is still active disease, and that will continue until the Entyvio has fully kicked-in.

Like many, I felt wiped after receiving the infusion, but nothing that a nap & a lazy night didn't handle.

In terms of cost, the line item on my EOB is "Chemotherapy Services", and my co-pay ends up being around $350. I'll use the Entyvio Connect to bring that down.

 

[malmer7]

Had my 2nd infusion two weeks ago, 3rd is scheduled for the first week in September.

As it was explained to me, it really takes 12-15 weeks for the full effectiveness to present. With that being said, I've noticed some minor "break-through" symptoms have been clearing up. Unfortunately, there is still active disease, and that will continue until the Entyvio has fully kicked-in.

Like many, I felt wiped after receiving the infusion, but nothing that a nap & a lazy night didn't handle.

In terms of cost, the line item on my EOB is "Chemotherapy Services", and my co-pay ends up being around $350. I'll use the Entyvio Connect to bring that down.

You're exactly right on this one, and it sounds like you and I are about on the same schedule. The docs at Stanford explained to me that a decrease in symptoms can be seen in as little as 5-6 weeks, but that a higher percentage of patients saw results more around that 12-15 week range like you're saying.

A lot of us that have failed remicade probably recall other people that started feeling better 24 hours after their first remicade infusion, but that just doesn't seem to be the case with Entyvio, so it sounds like it just requires more patience. The way I understand the drug, it doesn't prevent the active disease, it keeps new white blood cells from joining the attack party, so it must take several weeks for the active white blood cells to die off and for things to cool down. That's what I'm hoping anyway...

 

[pink1]

I've been reading but never replied!

I have had 2 doses of Entyvio. Due for the 3rd the beginning of September. I have yet to see an improvement. However, like others, I was told this would take longer to see a result. The drug was studied at my doctor's office and they are still following patients that are several years out.

I have had fatigue and some pretty bad headaches. Otherwise no other side effects. Though the fatigue has been pretty bad. The infusions are very easy. I have done no premeds.

My doctor's office got a 6 month insurance approval. And I have co-insurance through Takeda's program. My co-pays are $50/per infusion. I have UC by the way (failed humira and remicade).

 

[Wildanimalpark]

So far,so good...My daughters first infusion was last Wednesday. The infusion is only 30 minutes but the drug takes twenty minutes to be reconstituted which they wisely do not start until the IV is in place.

She was tired the first few days but then started complaining of soreness all over and that she did not want the kitten to walk on her because it hurt. Gradually the tenderness receded to her abdomen where she would complain if you touched her belly. Today she says that she is still sore but not as painful and tender as before.

This past week has been good with no vomiting and very little Crohn's pain. Her stools have been much better and she has made it to school each day. I hope this is finally the drug for her. In the past two years she has been in the hospital 10 times, PICU 10 days, two surgeries,c-diff, Remicade with no relief, Humira no relief, 6MP pretty good but now sky high toxicity levels which brings us to Entyvio.

I hope this is a benefit for all who take it.

 

[they call it a come back]

I am so tired and have no desire to do anything even brushing my hair, I need help any sugesstions would be great I think I may quit entyvio this is only week 5 and I just want to be me again, I go to my doctor again friday and they are calling the company to find out what to do, I just need an energy boost and I am getting desperate, I am usually a happy person and see the good in every situation, I choose to be happy, but my happy is gone and I need it back ,sorry to vent so much but I think if ayone knows how I feel it would be you guys? My doctor always says he can see when something is wrong with me when I dont make a joke I have nothing to laugh about, my hair is falling out, my nails are brittle and my skin is
extremely dry, my daughter misses me and I just want to be who I use to be but I am starting to forget who she even was, I want a good day but my miracle is not coming I think I am dying, someone pull me back, an no I am no suicidal haha I made a joke, my sarcastic sense of humor. If you can help please just take the time to help, my family expects the pretty girl to show up and she is missing in action., they are getting a empty shell now, their pearl is missing. HELP

 

[Wildanimalpark]

They call it a come back.....
Trying to get your "mojo" back is tough especially when you are so tired. Recognizing that it is gone is the first step.....so you are on the way.

!. Exercise stimulates serotonin which helps our mood. Can you start a water exercise program for YOUR health. Our local YMCA has Aquafit classes that are gentle on the bones but gives a cardio and muscle stretching work out. It seems a small step but it is very helpful to my daughter and I. We spend some time after in the sauna and have bought mats to try the yoga. Sometimes it just helps to be out.

Volunteer at the Humane society to walk dogs and pet kittens. Time spent on brushing a pet is very therapeutic and benefits the animal as well.

Making your self do these things is hard the first time but the benefits the next day are amazing. I had more energy and slept better. Try it, try it, try it... do it for the kittens, do it for you, do it for your family. No talking, no head games, rote exercise and volunteering...

You could be a substitute driver for meals on wheels on day a week...it just helps to do mindless activity for a while.

Good luck!

 

[CrazyQ84]

Has anyone taking this tried Remicade and had a severe allergic reaction? I just learned about this medication today but worried I would have the same reaction to this as I did with Remicade I ended up in ER to be intubated and ICU for observation for 2 days

 

[they call it a come back]

Thanks everyone for their support it means alot, and I have to say I have my nieces today and the babies make me feel happy again, listening to their silly stories, today is a better day

 

[tricia_c]

Has anyone taking this tried Remicade and had a severe allergic reaction? I just learned about this medication today but worried I would have the same reaction to this as I did with Remicade I ended up in ER to be intubated and ICU for observation for 2 days

Remicade is a combination of mouse and human antibody amino acid sequences, (a chimeric monoclonal antibody). Some people develop antibodies to the Remicade, and have reactions. I was on it for about a year, my bloodwork showed I was developing antibodies to it, and the doc tried to adjust dosing, but I ended up with a reaction (back spasms, blood pressure drop to the point of almost passing out) during an infusion. They stopped the IV immediately and gave me saline, my blood pressure went back to normal, and I was ok after about ½ hour or so, but that was it for Remicade.

From what I understand about Entyvio, which is a human monoclonal, although there is the chance of developing antibodies, it is less likely than with a drug like Remicade.

From what the nurses at the infusion center have told me, Entyvio patients they have seem to be tolerating the drug well, although it is very new, and the patient population is very small. I had my first infusion last Friday, no side effects at all. Fingers crossed that this continues! 2nd infusion due up next Friday.

 

[Dnlknight]

I have had the three loading doses of entyvio. I haven't noticed any symptoms. Recently my fistula which was high output almost stopped putting out anything and my other two appeared to be closing. This lasted for about five days. I was so happy and only had to use a small amount of gauze and no bag. Then all,of a sudden my output came back. My gastro and I thought the Entyvio was working but now I don't know what's going on. I did stop st feeling pinching pain from my hernia and my stomach does not look as distended. And that continues to be the case. I have been out of work for some time and am planning to return to work Sept 2nd. This is so depressing. I was so excited to lose that bag which was always leaking and to stop the TPN. Any thoughts?

 

[rollinstone]

Hey guys, sorry to post on here. I'm not doing entyvio, just been reading that a lot of ppl seem to still be struggling, I just wanted to make you all aware of other potential options that have been showing very promising results... One in my sig (the ssi vaccine) and also anti-map therapy. Hope you all find remission. Bless

 

[Brian'sMom]

Has anyone taking this tried Remicade and had a severe allergic reaction? I just learned about this medication today but worried I would have the same reaction to this as I did with Remicade I ended up in ER to be intubated and ICU for observation for 2 days

My son had allergic reaction on 3rd dose of Remicade when he was 10. He just had his 2nd dose of Vedo yesterday. No signs of any allergy to it. It is all human I believe. They gave him Benedryl with first dose... but didn't yesterday. Hope that helps

Also, in regards to people saying it takes longer to work...I read that responses in the trial were seen earlier in UC patients because their intestinal damage is not as deep as with Crohn's. So it makes sense that it would take longer with Crohn's people. My son has extensive damage in his rectum. We are hoping to avoid removing it. He currently has an ileostomy. Its frustrating that we are the pioneers of this drug... so no examples to look at. Glad we have each other. I just hope that the ones that have good response stay on here to report so that we get all sides of it. Not just the ones still struggling.

 

[they call it a come back]

My son had allergic reaction on 3rd dose of Remicade when he was 10. He just had his 2nd dose of Vedo yesterday. No signs of any allergy to it. It is all human I believe. They gave him Benedryl with first dose... but didn't yesterday. Hope that helps

Also, in regards to people saying it takes longer to work...I read that responses in the trial were seen earlier in UC patients because their intestinal damage is not as deep as with Crohn's. So it makes sense that it would take longer with Crohn's people. My son has extensive damage in his rectum. We are hoping to avoid removing it. He currently has an ileostomy. Its frustrating that we are the pioneers of this drug... so no examples to look at. Glad we have each other. I just hope that the ones that have good response stay on here to report so that we get all sides of it. Not just the ones still struggling.

I am sorry for your son and you I too was a kid with crohns and it was hard but I survived and he will too I hope things look up for the both of you

 

[they call it a come back]

Well my doctor is wanting to try provigil which is for narcolepsy to try and keep me more alert, but my insurance is bucking hopefully tomorrow it will be approved or I am trying something else I am hopeful this will bring me out of my mental coma lol, I will keep posted if this helps, they are hopeful though

 

[they call it a come back]

Well the provigil was being stuck in approval so they gave me ritalin, so far so good but not much energy yet but I am only a few hours out

 

[kromom1]

jenr3191973 - I'm beginning to think that Remicade (or Humira) induced lupus isn't so uncommon, as I've now seen at least four of us on here who have had it!

I had my third infusion of Entyvio today. I feel very lucky after reading through all of these posts that I am not having the side effects some of you are. I did have the fatigue, headache, and dizziness after my first infusion, but it only lasted a few hours and went away. I do notice that my feet and ankles have been swelling, which is new for me. I don't see this listed in the side effects. Is anyone else having this?

As far as improvement, I haven't noticed blood in my stool (which is common for me) for at least a couple of weeks, so maybe the Entyvio is doing something? Hard to say. I also think I am having less diarrhea, but that is hard to say for sure, too, as I am so inconsistent.

Overall I am very hopeful, and am praying for good results for all of us!

 

[Brian'sMom]

My son had his 2nd infusion friday the 22nd. He seemed tired after his infusion. But was fine after dinner. He is also only 14, so he doesn't complain much about anything. Kids are pretty resilient. I've noticed the past 5 days his eyes look red in the outer corners. We see the opthalmologist tomorrow to rule out inflammation (Uveitis). He's had some nightmares... but he also had 2 of those before he even started Vedo. (night sweats and hard to wake from the bad dream). I think he's worried about a 2nd surgery of removing his rectum and moving his stoma to the other side. I'm not sure what could be a side effect to the drug... or just a side effect of crohn's disease. I think its hard to be sure. It seems like the drainage from a very damaged rectum is decreasing this past week.... but that can be unpredictable. I think the only thing that will tell is to do an MRI in a few weeks.

 

[RexyGirl]

In 2008, I was diagnosed with Crohn's disease in my upper GI tract (duodenum, esophagus, mouth), with additional symptoms outside the GI tract including skin sores, fatigue, and joint pain. I have failed most treatments, including a clinical trial of Rifaximin. I had the most success with Remicade which worked for 2 and 1/2 years before I developed demylinating lesions in my brain and lupus symptoms.

Insurance approved me for Entyvio, and the hospital charity care program approved my request to cover my remaining co-pay ($500+). I had my first infusion on Thursday, August 21. The infusion was easy-peasy. It took longer for them to set up my IV, take blood and vital signs than it did to run the drug in. The only side effect I experienced during the infusion was slight pain in my upper back and the sides of my chest. But that could have been related to anxiety rather than a side effect.

3 to 4 hours after the infusion I began to feel fatigued and slightly nauseous. But it was very tolerable. The fatigue became severe on Saturday (2 days after infusion), but only lasted 2 days. Not even close to the side effects of Remicade that were so bad that I needed morphine for 2 to 3 days afterwards.

I am feeling more confident about Entyvio and look forward to hearing from others as to their success with the treatment.
I will check back in with my experiences with upcoming infusions, and I hope that my post will help others to feel a little less anxious about starting Entyvio treatments themselves.

 

[kromom1]

Brian'sMom - I pray that this treatment will work for Brian especially, as well as for the rest of us, but no child should ever have to deal with this terrible disease. Best wishes.

 

[Rockdawg]

Hey everyone...I am hesitant to type this, because I don't want to jynx anything, but I feel that I am feeling some improvement, and I am a little over 3 weeks into Entyvio treatment (2 infusions). I had been running fevers everyday, and I have not run one in 4 days I also seem to have a little more energy, but again, we know that Crohn's fluctuates, sometimes day to day, so I am not throwing a party yet.

On the negative side, I have about 5-6 sores (canker, cold sore type things in my mouth). I have definitely gotten these before, I just don't think that I have gotten them this bad before. I am also concerned that they won't let me get my 3rd infusion if these are still present in a couple of weeks. I am trying to jsut ignore them and hope they go away...

 

[hingrum]

I am waiting for my insurance to approve Entyvio too! I am excited to start the new drug. I have tried every biologic and none have been successful.

Has anyone had treatments without negative symptoms?

 

[LandShark]

I'm about a week out from my first infusion, and like Rockdawg (fellow Cleveland fan?), I don't want to jinx anything, but I'm kinda doing better. Frequency is diminishing, even though I've cut my Uceris down to every third day from every other day. It really is too soon to say, though (perhaps it's placebo effect, dietary changes, etc).

The fatigue has hit me as well, along with occasional lightheadedness. It's been difficult staying productive...I've had a couple spectacular crashes, though it seems to be lifting.

ETA: Hingrum, the infusion nurse at my hospital told me that everyone she's treated (which is everyone getting Entyvio infusions here, and it's a major medical center) has tolerated it well and she's hearing fewer complaints than she has for Remicade.

 

[Brian'sMom]

Has anyone experienced night sweats along with nightmares? My son will have a couple days break... but will then have another. They are wierd. We have to turn on a light and wake him up. In a different thread Oregon talked about having nightmares... and now that my son has had them... makes me worry.

Rockdawg... my son has been having mouth ulcers come and go since May. He still got his infusions. BTW, recently we were sent to a dermatologist and she prescribed Fluocinonide gel. He puts it on a Q-tip and holds it on each ulcer (or even places where he thinks one is coming). It really has helped them go away quickly. He also rinses lately with Chlorhexadine mouth rinse.

 

[Brave]

My Dr. is wanting me to start on Entyvio or Methotrexate in the next week. I'm going through a really bad flare at the moment, on 40 mg of pred (although the pred is helping a lot; almost a miracle drug for me).

Does anyone have any advice on which one I should start? At the moment after reading most of this thread I'm really leaning towards the Entyvio.

 

[Wildanimalpark]

The methotrexate caused so much vomiting my daughter could not take it.Remicade for six months did nothing for her, Humira for three months and no change so we are to Entyvio.

Second dose Wednesday and she is sleeping almost all day and night. She has headaches when awake and feels nauseated. Last night she was vomiting at 1AM.

The Entyvio works from the outside in and in theory you should get relief soon. My daughter vomited for the first time in two weeks last night prior to Entyvio she was vomiting 6-8 times per day. The stomach pain is much better and her side pain is gone.

The fatigue is the biggest kicker and I hope it lets up on day three or four.

We are going to see Dr. Sanborn in San Diego in September and the trip is two days after her 6 week dose. I dread the thought of her on the plane for five hours feeling miserable. I do not even know what to hope for anymore to get relief from this two year flare.

Anyone else been to Dr. Sanborn?

 

[RexyGirl]

RockDawg ~ I saw you posted about mouth sores. I get pretty bad mouth ulcerations. Doc prescribes "Magic Mouthwash", and it really is magic! It is a liquid mix of Lidocaine, Maalox, Benadryl and Carafate. I can use it up to 8 times a day (have to wait at least 10 minutes to eat after using it because it can numb the back of the mouth and interfere with swallowing). I just swish for about 30 seconds then spit. It works great. Hope that helps.

 

[tricia_c]

My Dr. is wanting me to start on Entyvio or Methotrexate in the next week. I'm going through a really bad flare at the moment, on 40 mg of pred (although the pred is helping a lot; almost a miracle drug for me).

Does anyone have any advice on which one I should start? At the moment after reading most of this thread I'm really leaning towards the Entyvio.

I'm on both. After failing on Remicade, I went on Cimzia. Now seeing a different doc (head of gastro at Tufts in Boston) and he kept me on Cimzia but added methotrexate injections (25mg/once a week). I also have psoriasis and psoriatic arthritis; almost immediately the psoriasis cleared up (it had been getting better with UVB treatments, but was still lingering). We determined the Cimzia wasn't doing anything for the UC and gave the methotrexate a few more weeks to see if there was any improvement. There was no consistent improvement, so he's kept me on the methotrexate and added Entyvio.

I think nausea issues are more prevalent with the oral methotrexate, not with the injections. All that said, you might try the methotrexate first, give it a few months, and then if needed add Entyvio? Important to have bloodwork done with the methotrexate, it can be tough on the liver, and you shouldn't have alcohol when on it (or I've heard maybe a drink or two a month max). But it is easy to self inject at home weekly, and inexpensive. Entyvio (I had my second infusion today) of course involve getting to an infusion center, but the infusions are easy - 30 minutes once they start the IV. Good insurance coverage, plus the manufacturer's Entyvio Connect plan help with cost. I just saw the claim for my first injection and the amount billed was over $20K! With insurance and Entyvio Connect my copay should be $50, but I'm not sure how long the Entyvio Connect plan helps with copays, possibly the first year?

Good luck with whatever path you choose!

 

[suschex]

Sorry I didn't reply sooner, albeit "severe" and described as aggressive by my GI, I'm fortunate to have only been affected in the colon. Is hasn't, yet anyhow, mined to my small bowels.

So, chopping out the colon and hopefully will be largely med free, but my doctor did mention a very low dose of Humira to help maintain.

I was on it weekly before and I'm not sure it helped. Oh well! I'm all in, sad it gotto this point so quickly but it will be okay. Life goes on!

I had a lot of hopes for this medicine, the timing just didn't work out for me, in short, I just ran out if time is all!

Hoping it worked wonders for you! I was also interested in The SSI vaccine from QU Buologics, I couldn't help but wonder if they were kind of the same but I think they're totally different from what I've read.

Anyhow, best of luck everyone! I'll continue to follow this, who knows it may be a post op med for me! Keep rockin!

I am in the exact same situation you are with failing all other drugs and having Crohn's Colitis only(although I have had the first Entyvio dose a week ago) just prior to meeting with the surgeon for the first time ever.

I had always been told no surgeon would consider a total colectomy b/c I didn't have life-threatening symptoms like uncontrollable bleeding, etc. I have been in constant flare this time for 3 years. The surgeon (chief of surgery at the hospital) feels that it is a no-brainer that my colon should come out and that he can do a laparoscopic total colectomy with an ileorectal anastomosis so I would not (at least for now) have a bag.

The decision is left to me to either keep giving Entyvio a chance or to go ahead with surgery. I have begged for years to just take out my colon but my GI's (3 different ones over the years it have never seen a surgeon) have always wanted to avoid surgery at all cost and just keep trying different meds. For me, I feel like I would be happy to have the surgery tomorrow but at the same time I don't want to make the wrong decision.

I am curious to hear more about your situation. Have you had the surgery. Could you suggest anything I should read in my decision making.

Best,
Suzanne

 

[sk12383]

I am waiting for my insurance to approve Entyvio too! I am excited to start the new drug. I have tried every biologic and none have been successful.

Has anyone had treatments without negative symptoms?

@hingrum (and everyone) -- I have had 2 infusions, with the 3rd scheduled for 9/11/14. I've had zero side effects from each infusion, both receiving it and subsequently.

Here's what has happened so far:
Pre-entivio: nausea, abdominal pain, perianal fistual seeming to be returning via slight abscess, zero appetite.

After entyvio doses 1 +2: Nausea was completely eliminated. Abscess disappeared (the surgeon said no evidence of any perianal issues). Appetite is back for the most part.

The thing that's really crazy is the abdominal pain might be worse than ever. It hits hard and doubles me over for about 3-4 hours a day.

Sounds like the consensus is this stuff takes a long time to kick in VS TNF-inhibitors, which always had a rapid kick-in. This makes me skeptical of the decision to take me off of Cimzia immediately after starting Entyvio. Seems like having that immediate relief (granted, it was not fully controlling my disease but the abdominal pain wasn't so bad) would be a good idea at least for the first month or so of Entyvio.

Has anyone had the 3rd dose yet? Would be curious to see if people are experiencing similar timelines. It's interesting to me that it would totally knock out some symptoms but basically do nothing for the other.
_____________________
Seth
Crohn's February 1995 (age 12)
Subtotal colectomy with illeorectal anastamosis 1999
Laproscopic takedown/repair of anastamosis 2011
Fistulotomy x2 2013 + 2014
Meds tried and eventually lost response: Imuran, all 5-asas, methotrexate, Remicade, Humira, Cimzia.

Presently: Entyvio (4 weeks in), Entocort, Cipro, flagyl (tapering), VSL 3

 

[tricia_c]

sk12383:

Had my second infusion yesterday, no side effects from either, can't really tell if slight improvement is from the drug or if I'm managing symptoms better at the moment. Still I remain hopeful. As to being on both Cimzia and Entyvio at the same time, I think there would be a risk that you'd be knocking your immune system down too far and be more susceptible to infection.

 

[sk12383]

I am in the exact same situation you are with failing all other drugs and having Crohn's Colitis only(although I have had the first Entyvio dose a week ago) just prior to meeting with the surgeon for the first time ever.

I had always been told no surgeon would consider a total colectomy b/c I didn't have life-threatening symptoms like uncontrollable bleeding, etc. I have been in constant flare this time for 3 years. The surgeon (chief of surgery at the hospital) feels that it is a no-brainer that my colon should come out and that he can do a laparoscopic total colectomy with an ileorectal anastomosis so I would not (at least for now) have a bag.

The decision is left to me to either keep giving Entyvio a chance or to go ahead with surgery. I have begged for years to just take out my colon but my GI's (3 different ones over the years it have never seen a surgeon) have always wanted to avoid surgery at all cost and just keep trying different meds. For me, I feel like I would be happy to have the surgery tomorrow but at the same time I don't want to make the wrong decision.

I am curious to hear more about your situation. Have you had the surgery. Could you suggest anything I should read in my decision making.

Best,
Suzanne

Hi Suzanne-
I hope you don't mind me opining on this but thought this might be helpful as I've had a colectomy and have an anastamosis like the one you described. My experience has been that you really do want to hold onto your colon as long as you possibly can, because when you do have it removed and have the antastamosis, that brings with it a number of its own challenges (such as scarring & narrowing, obstruction).

I don't see much hesitation by doctors to send us to the surgeons if they think it's come to that. You're so early into Entyvio, I would definitely encourage you to give it another 6-8 weeks minimum to evaluate its efficacy.

Also, in our medical system, surgeons do make more money by doing more surgeries, so many --if asked-- will probably recommend one. It's when your GI thinks there is no other chance that it's probably time to consider one. I would be very hesitant to move forward given how much your GIs disagreed with its necessity.

It might be the right move, but a few more months to see if Entyvio can help is probably worth it in the big picture. Best of luck.

 

[Dunerfool]

Had my 2nd Entyvio infusion on Wed 8/27/14. Some fatigue seems to be my primary side effect. I did pre-medicate as a precaution again. Hopeful that things will improve. Five years for a flair is WAY too long. I'll continue to keep everyone posted.
Suschex, I have refused my last 3 GI's suggestion of a total colectomy. I've met with a surgeon. I'm not ready to give up yet.
Prednisone is the only thing that seems to work - although after being hospitalized mid/late July (4 pints of blood and 2 bags of iron later-I had been passing blood so bad for over a week that my Hemoglobin came in at a 4.9- no pain or fever though!)) it seems like some sort of corner has been turned. In addition to IV steriods, I also received about 4 doses or so of Vancomycin via IV. They never could find the exact source of so much blood loss, but I am seriously thinking the Vancomycin may have something to do with the corner turning. I mean its been 5 years of straight diarrhea! Within a couple of days of being out of the hospital, I started to have some somewhat formed stools. Let's see what the Entyvio does.

 

[Patrice]

Hi, I had my 3rd dose of Entyvio 2 weeks ago. I have seen big improvements. The abdominal pain has decreased dramatically, the joint pain has also decreased. My energy is still low but I am on TPN all night which makes you have to go the bathroom all night.(urine). Started eating food a few weeks ago hoping to stop TPN soon. I have not had any side effects from entyvio. The only thing I have had is some nightmares since starting. Not fun , but I will take them over Crohns any day.
I also tried Remicade, Humira both worked for about 1 year then I got drug induced lupus. Cimzia & methotrexate never worked,
I saw some discussions about colectomy. I had my colon out & a illeostomy put in 25 yrs ago. I know there was talk about concerns for losing your colon. I was 15 when I had mine removed & best decision I have ever made. I had my longest remission when it was removed. It allows you to have a semi normal life. The disease I find interferes more than a illeostomy.
Hope everyone is feeling better.

 

[tricia_c]

2nd infusion Friday, no issues. But today (Sunday) right after lunch I felt like I was going to fall asleep at the table, not just 'I'm full from a good meal and I think I'll go and relax' it was 'I have to go sit or lie down now'! Went to sit and watch some TV and was so tired I felt like I couldn't lift my arm to get the remote. Closed my eyes and was out cold for about 2 hours. Woke up, and now feel fine from my little power nap. Don't know if it's related to the Entyvio or methotrexate or both, but I'll gladly take power naps vs the lingering fatigue that some are reporting.

 

[tzvia]

If you are switching from Humira to a Entyvio, can you switch right away, or is there some kind of waiting period so that the Humira can get out of your system? I'm hoping to be able to switch over quickly, if I can work it out with insurance

 

[sully1102]

You need to wait 10-14 days from your last injection

(In the chair for infusion #3 right now)

 

[sully1102]

Just got home from my third infusion - wow, the fatigue sets in quick. The drive home from Boston got dicey at the end. All the nurses at Brigham & Women's are eager to start hearing results from patients.

 

[sk12383]

Hi all,

Has anyone gotten sinusitis? I'm at week 5 (one week exactly from 3rd infusion) and lots of coughing and sneezing. I'm kind of "glad" because it's a known side effect so maybe that means the intended effects are starting to work now too. I sleep about 11 hours a night and abdominal pain is about the same, but it has remained effective against nausea and has increased my appetite which is such a relief.

Hope everyone continues to observe results.

 

[Brian'sMom]

We are at week 4 and my son has had a cough sound in the mornings. It sounds loose... but nothing really comes up. He said it feels like a tickle later in the day. I never thought about "Maybe the effects show it may be starting to work".. that's a positive outlook sk12383. He also has an increased appetite. But I haven't seen weight gain. But he still has a lot going on in his rectum ( he had drainage even tho he's diverted with an ileostomy) so that most likely is burning his calories. And he's only 14 so his metabolism is probably burning off his calories.

 

[Dunerfool]

When Remicade was working for me, I used to get a sinus infection almost 1 week to the day following an infusion. Now that I'm on Entyvio, I feel on the verge of one almost every morning, and have been having some headaches, although not of migraine severity. I've been using a humidifier at night while sleeping and breathe in the mist several times during the night and then when I get up in the morning. So far it seems to have been keeping the sinus infections at bay and helping with the sinus type headaches. Fatigue is still there, but not too severe.

 

[sk12383]

I wanted to share another interesting Entyvio-related development I've observed regarding its impact on my intestinal bacterial/flora.

I've always struggled with bacterial overgrowth and was on 1000mg Cipro + 750 flagyl for the last several months. Occasionally I would notice it was too much and I'd try to balance it out with VSL 3 probiotics. More often than not, though, I would need to be very conservative about my probiotic use b/c it would translate to overgrowth easily.

As my GI and I were looking to mitigate abdominal pain, I told her I felt like all the antibiotics were stripping my gut of good flora since my second entyvio dose. We agreed to taper it off and see what happened. Since then I've tapered down to 250 flagyl and stopping it on Sunday. Still having to throw VSL 3 down every day (twice the dose I would usually take) to maintain balance. I have ZERO signs of overgrowth. In fact, I'd say the antibiotics are still too strong even with heavy probiotic usage (1 pack of VSL 3 for someone with no colon can be overwhelming, at least it used to be. I may have taken 2 yesterday) and after going off flagyl for a week I'm going to ask to reduce Cipro too if appropriate.

Curious as to whether others have struggled with maintaining a flora balance and observed any changes with that strategy since starting Entyvio. I do think that the antibiotic reduction and probiotic increase has helped with the abdominal pain, or perhaps it's just Entyvio starting to work. Hope this is helpful.

 

[duh panda]

Hey sk12383. Really appreciate you sharing this!

Still waiting on a hiccup in paperwork somewhere along the line with the clinic to get scheduled for my first infusion, but will update once I finally get there.

I have had the opposite when it comes to intestinal flora/ balance - tendency for yeast/ candida overgrowth. Have been able to manage with the occasional anti-fungal and watching sugar consumption, but it's always a precarious balance to keep things from swinging too far the other way.. interested to see whether or not this is affected one way or another.

 

[they call it a come back]

I am in the exact same situation you are with failing all other drugs and havin ng Crohn's Colitis only(although I have had the first Entyvio dose a week ago) just prior to meeting with the surgeon for the first time ever.

I had always been told no surgeon would consider a total colectomy b/c I didn't have life-threatening symptoms like uncontrollable bleeding, etc. I have been in constant flare this time for 3 years. The surgeon (chief of surgery at the hospital) feels that it is a no-brainer that my colon should come out and that he can do a laparoscopic total colectomy with an ileorectal anastomosis so I would not (at least for now) have a bag.

The decision is left to me to either keep giving Entyvio a chance or to go ahead with surgery. I have begged for years to just take out my colon but my GI's (3 different ones over the years it have never seen a surgeon) have always wanted to avoid surgery at all cost and just keep trying different meds. For me, I feel like I would be happy to have the surgery tomorrow but at the same time I don't want to make the wrong rious to hear more about your situation. Have you had the surgery. Could you suggest anything I should read in my decision making.

Best,
Suzanne

I too saldy know the feeling of hopelessness, begging for surgery and then when the options are laid out in front of you there is no clear answer. I went through about the same things and was so scared to make a permanent decision on desperate feelings if that makes any sense, I believe you will get it. My doctor told me one thing that helped me (though he is brutly honest, he scares me sometimes) we even with surgery no one can fix you, all your problems will not magically go away, it will never be gone, just a different obstacle, which couse you choose is all your own. For now I choose entyvio, over time maybe it will help, not just hurt. I am 10 weeks out from my first infusion. Best of luck suzanne

 

[suschex]

I too saldy know the feeling of hopelessness, begging for surgery and then when the options are laid out in front of you there is no clear answer. I went through about the same things and was so scared to make a permanent decision on desperate feelings if that makes any sense, I believe you will get it. My doctor told me one thing that helped me (though he is brutly honest, he scares me sometimes) we even with surgery no one can fix you, all your problems will not magically go away, it will never be gone, just a different obstacle, which couse you choose is all your own. For now I choose entyvio, over time maybe it will help, not just hurt. I am 10 weeks out from my first infusion. Best of luck suzanne

Thank you for the advice....it is good! I just had my second Entyvio infusion yesterday. What changes have you seen in the 10 weeks you have been on it?

 

[they call it a come back]

Thank you for the advice....it is good! I just had my second Entyvio infusion yesterday. What changes have you seen in the 10 weeks you have been on it?

Well my abdominal pain is becoming less noticiable, and I still have diarrhea but is starting to become less, I have a colonoscopy in two weeks so will know for sure then if my disease is as active as it was. I am hopeful that it s working I think it is or maybe I just hope so I will know for sure soon

 

[nogutsnoglory]

Hey folks, we now have an Entyvio forum if you want to get more in depth about your experience, or questions feel free to post a thread http://www.crohnsforum.com/forumdisplay.php?f=319

 

[Rockdawg]

Hey all, just an update. I go in for my third infusion tomorrow. I swear, for about a week or 2 after my 2nd infusion, I was feeling great. But now, I have backslid back into feeling all "Crohnsy" again. I am hoping it is just because I haven't been on Entyvio that long, and I am still doing the loading doses. Does this sound familiar to anyone? I was also on Cephalaxine (sp?) two weeks ago, for an unrelated hand injury, so perhaps that is why I was feeling so good? In any event, I hope I feel better after my 3rd infusion tomorrow...

 

[sk12383]

Hey all, just an update. I go in for my third infusion tomorrow. I swear, for about a week or 2 after my 2nd infusion, I was feeling great. But now, I have backslid back into feeling all "Crohnsy" again. I am hoping it is just because I haven't been on Entyvio that long, and I am still doing the loading doses. Does this sound familiar to anyone? I was also on Cephalaxine (sp?) two weeks ago, for an unrelated hand injury, so perhaps that is why I was feeling so good? In any event, I hope I feel better after my 3rd infusion tomorrow...

Hey, sorry to hear you're not feeling well again. I have my 3rd infusion on Thursday so we're on very similar timelines. I haven't noticed a slip back into bad symptoms but the fatigue that others have mentioned is on in full force. Have you noticed that? I've had to sleep like 10-12 hours a night and very out of it when I am awake. It's certainly better than pain though. Along those lines, I did make one other big chance to my meds so I'll toss it out in case helpful. I've dropped a significant portion of my antibiotics and still need to supplement with probiotics. This is a huge change for me and I actually think it might have something to do with my pain reduction more than Entyvio (though I think they're working together. Entyvio is creating an environment less conducive to overgrowth).

From what some of the infusion nurses told me, folks really have widely varied response to Entyvio in the short run, but they really say it can take 14 weeks before a true response can be evaluated (sooo much longer than the other biologics).

Hang in there -- there's still a great chance it will turn things around.

 

[sully1102]

I'm now a week after my 3rd infusion, and I've noticed the "magic" is happening. Over the weekend my appetite returned with force (I had become more of a grazer, unable to finish a full meal at one sitting), my night sweats have disappeared, and I wake-up most mornings ready to start the day. Plus, the diarrhea has essentially cleared-up.

Knock on wood this is all due to Entyvio starting to kick-in.

 

[they call it a come back]

Just got home from my third infusion - wow, the fatigue sets in quick. The drive home from Boston got dicey at the end. All the nurses at Brigham & Women's are eager to start hearing results from patients.

This mKes me nervous I go friday for number 3 and I am already nervous, i finally am starting to wake up, but now they are going to put me back down, I so hope it doesnt, do you feel any better yet, stomach and fatigue. I a am eager to for more positive results. I go soon for a colonoscopy so I am hoping they see some improvement that I think is the true test for someone to look inside and find out

 

[Rockdawg]

As far as tiredness, I haven't experienced any of that...through 2 infusions, I have not had any side effects at all I am actually getting my 3rd as I type this, I am hoping for some more "pep in my step" and a little less time in the old restroom.

 

[sully1102]

I can't speak for anyone else, but the fatigue I experience is only immediately following an infusion. I get home and need a nap, it's not an ongoing feeling of exhaustion.

 

[LandShark]

I had my second infusion a week ago. I have had fatigue after both infusions, though not until 2-3 days afterwards. It lingers for a few days. It didn't seem as bad after this last infusion, I was able to go to work (I actually missed a day of work after the first infusion, I was just too wobbly to leave home) and stay awake until bedtime, but I was definitely dragging.

(However, it is ragweed season here, I'm allergic, and my number one symptom after sneezing/congestion is fatigue - I really am hoping that's a part of it)

I'm hanging in there. I'm not sure it's doing anything for me yet, but I'm certainly not doing worse (and I've gone off LDN and have dropped my Uceris to every third day). I assume I'll have to wait at least another few weeks before I see a change (fingers crossed!).

 

[nogutsnoglory]

Anyone on Entyvio and a biologic? Do they feel this is smart or is this temporary till the vedo kicks in?

 

[tzvia]

Entyvio is a biologic. I don't think it's a good idea to be on two at the same time.

 

[nogutsnoglory]

But its not anti TNF so it may be safe.

Guys, I consolidated entyvio threads into the new forum http://www.crohnsforum.com/forumdisplay.php?f=319 if you notice any others let me know so we can house all of it in one place for those reading about and hoping to discuss this new drug.

 

[Brian'sMom]

The Vedo warning insert mentions not to be on a TNF.... Its under drug interaction

 

[nogutsnoglory]

Thanks.

 

[Brian'sMom]

Its all new.. I'm sure in no time they will be adding Methotrexate and TNF"S... We're all the Mice in this experiment!

 

[nogutsnoglory]

Haha that exp has been done on me already been on remicade and methotrexate together. Till my liver couldn't take it anymore.

 

[sk12383]

Hi all,

I had #3 a couple hours ago. I don't recall feeling so wiped after the first two, but this one really knocked me out. Anyone feel achy after theirs? It's clearly extremely powerful medicine so it doesn't really bother me that it makes me tired; I could hardly expect it not to, but it's something we'll all have to keep in mind when planning the rest of our days, weeks….

I wanted to blame the aches and fatigue on today's cold dreary weather and the M burger I usually get on the way home from the hospital (neither of which probably helped), but I don't think those would have knocked me out QUITE this badly. This may be the cost of doing business, so to speak, of Entyvio.

Having said that, I don't have any abdominal pain, I'm 5 days off flagyl with no sign of overgrowth, and I'm hoping to taper Cipro soon.

Hope everyone is doing well.

 

[abudman]

anybody smoke marijuana while on entyvio

 

[Wildanimalpark]

Four weeks and two infusions in....

The past week my daughter continues to have severe headaches has started with watery diarrhea for the past four days, joint pain and abdominal pain of 7-8 for the past seven days.

Her blood work came back Friday and her
Hmg has gone from a 12 to 10.7,
WBC 3.2
RDW 15.5
Hematocrit 33.2
Neutrophils 1.0
Lymphs 51
Neutrophils 32
Rbc 3.71

Bun 4
Bun/Creatinine ratio 6

These high and low numbers are all changes after Entyvio. These results are starting to look like her blood work when the 6MP reached toxic levels and we had to stop. Her blood work returned to normal during the three week wait for Entyvio to be approved and using Prednisone as a maitenance drug.

She has now missed an entire week of school and sleeps in between ab pain and trips to the bathroom. She woke up vomiting at 3AM Thursday and she has added phenergan to her bedtime routine. When awake she rest a cold pack on her head to ease her headache and takes Oxy for pain.

What are your symptoms with Entyvio?

 

[ADC]

I have received 3 treatments of Entyvio...4th treatment October 7th.
its a wonder drug! i spent 60 days in 2013 in the hospital with nasty flares of my UC. I have tried ALL UC medications with little results. Entyvio was my last hope before surgery. I even had my surgery scheduled at the Cleveland Clinic with Dr Remzi. I am currently 100% in remission.

47...Male
Washington Dc
please reach out to me if i can help in any way!

 

[pink&green]

Hubby GI wants to try Entyvio waiting to hear from Insurance company. I sure do hope it gives him some relief.

 

[duh panda]

Just got back from the 3 hour drive for my first infusion. Very excited to see how things go over the next 8 weeks (will be doing a scope to see disease status sometime in November after my third infusion).

ADC, How are they defining your remission? Did they do a scope? I'm so glad to start hearing it's working for so many on here to varying degrees!

I too have worked my way through all treatment options - I've been steroid dependent and surgery isn't an option due to extent of disease so really pulling for this and very optimistic since the way it approaches inflammation response differs so much from anything else I've worked my way through.

For those wondering about any side effects etc. I haven't noticed anything directly after my infusion. A Bit tired but whether that's from the drug or from the trip is a toss up and the exhaustion isn't anything more then I tend to experience on a more active day anyhow and was able to eat a good lunch and do a bit of grocery shopping with my mom before getting back on the road and crashing for the long drive home.

 

[ADC]

as it relates to being in remission, with this disease as you know you get very in tune with your bodies every move. When i have been sick i get real sick and my symptoms are always the same during a flare and leading up to one. To answer your question i am not having 15-20 BM a day. I haven't seen blood in months and i have been off steroids for 6 months (that's a record). I have also started training for another Ironman Triathlon. Compared to how sick i was 6 months ago for now the disease is at rest. remission? Who really knows? As it relates to side effects i do get a bit tired a few hours after infusion. Other than that I am perfectly fine after a good nights sleep (that is also new for me).
i pray you get the results you are looking for from Entyvio. Please keep me posted.

 

[duh panda]

That is awesome! Good luck with your training, I bet it feels great!

 

[Brian'sMom]

My son had his third infusion today. No fatigue. He also had an MRI today and drank contrast. He's a trooper!! I'm not sure anything will help heal his rectum. Local GI will be consulting with Mayo GI....But maybe Vedo will keep the rest of him crohn's free.

 

[Saratay05]

Hi everyone
It's been interesting reading all your experiences. I am hoping to discuss starting this medication with my doctor, as it now appears I've failed cimzia. Had a colonoscopy recently after taking a cimzia, entocort, Imuran combo;and still cytology in terminal ileum is positive for active crohns. I could've told them that by the way I'd been feeling for the last year. But, new GI, wanted her own confirmation. New GI wants me to double the cimzia but insurance will not pay for it as it's outside federal guidelines. Ugh. So, I think the next logical step is to try some thing new.
What type of blood work and other hoops do you have to jump through to get approved for entyvio? I also understand it's an infusion, but how often and how long does it take to complete? And are there limited places that can provide this infusion, so it might be a long drive away?
Thanks for your help and here's hoping you all get relief with this new medication!

 

[tricia_c]

Hi everyone
It's been interesting reading all your experiences. I am hoping to discuss starting this medication with my doctor, as it now appears I've failed cimzia. Had a colonoscopy recently after taking a cimzia, entocort, Imuran combo;and still cytology in terminal ileum is positive for active crohns. I could've told them that by the way I'd been feeling for the last year. But, new GI, wanted her own confirmation. New GI wants me to double the cimzia but insurance will not pay for it as it's outside federal guidelines. Ugh. So, I think the next logical step is to try some thing new.
What type of blood work and other hoops do you have to jump through to get approved for entyvio? I also understand it's an infusion, but how often and how long does it take to complete? And are there limited places that can provide this infusion, so it might be a long drive away?
Thanks for your help and here's hoping you all get relief with this new medication!

For some info on Entyvio: https://www.entyvio.com/ The manufacturer has a copay assist program, definitely look into that - it's called Entyvio Connect, some forms to fill out by you and doc office. I'm still waiting for paperwork to catch up, but it should bring my copay from $400+ down to $50.

Time for insurance approvals and requirements vary, for me no blood work or tests were needed, took about 10 days to get approved.

Infusion schedule is 0, 2, 6 weeks, then every 8 weeks. The actual infusion (from start to end of IV) takes only 30 minutes. Add some time before for pharmacy prep, and after if they want to observe you for reactions. I'm in and out in 1.5 hours.

I have my infusions at Tufts in Boston, because that's where my GI is, but can be done anywhere licensed to do IV therapy - GI clinics, hospitals, etc.

Good luck!

 

[Saratay05]

Thank you so much for the reply Tricia_c. I will definitely look into the copay assist. And good to know about time for the actual infusion. For some reason I was envisioning a 4 hour drip.
Have you experienced a good result? Good luck to you also!

 

[sk12383]

Hi everyone
It's been interesting reading all your experiences. I am hoping to discuss starting this medication with my doctor, as it now appears I've failed cimzia. Had a colonoscopy recently after taking a cimzia, entocort, Imuran combo;and still cytology in terminal ileum is positive for active crohns. I could've told them that by the way I'd been feeling for the last year. But, new GI, wanted her own confirmation. New GI wants me to double the cimzia but insurance will not pay for it as it's outside federal guidelines. Ugh. So, I think the next logical step is to try some thing new.
What type of blood work and other hoops do you have to jump through to get approved for entyvio? I also understand it's an infusion, but how often and how long does it take to complete? And are there limited places that can provide this infusion, so it might be a long drive away?
Thanks for your help and here's hoping you all get relief with this new medication!

Be sure to have the Quantiferon test for tuberculosis. I just got mine back that says it's positive but am already on entyvio sooo we will see how that goes. Best wishes.

 

[Saratay05]

Be sure to have the Quantiferon test for tuberculosis. I just got mine back that says it's positive but am already on entyvio sooo we will see how that goes. Best wishes.

I hope the positive Tb test doesn't effect your results with the med and that you receive a quick remission. Thanks for the suggestion!

 

[Honey Badger]

Had my third Entyvio infusion yesterday and again had fever, aches, chills, headaches and generally felt unwell. Today mostly only headache. Have actually been feeling more abdominal pain since stopping the Methotrexate and beginning Entyvio. Anyone else having same experience?

 

[duh panda]

Sitting at a week out from my first infusion and counting down the days till my next!!! So far I haven't really noticed anything negative - felt a bit slower then usual a couple hours after the infusion but by the next day any fatigue felt was on par with how i've felt for the past decade.

I have noticed a decrease in overall pain the past couple days - it still builds spiking to an exhausting 8 in the evenings but the severity doesn't stay there as long as it has been since May - tends to drop to bearable 6's within the hour and then stays pretty consistent till I go to sleep. Could be a number of things (body finally regulating after moving 1000 miles the past 2 weeks/ stress levels evening out, simply the nature of crohn's etc.) but I'm banking on it being the Entyvio. Positive thinking!

On the flip side I'm getting crazy night sweats again (my guess is it's just the prednisone doing it's thing since the sweats seem to always come and go as they will) along with an increase in nausea which I'm attributing to being back home with my mom and eating her cooking which tends to be higher in fat then I would cook for myself.

Really too early to know anything for sure, won't have any "real" evidence until a scope after all loading doses but so far Entyvio's treating me well.

 

[ADC]

duh panda
wishing you the best of luck!!!
ADC

 

[abudman]

Had first infusion yesterday. Little tired but hoping for good results.

 

[SKCARR]

I just completed my 3rd infusion treatment today. Everything has gone good so far. I was told today that I should really start to see a difference at 10 weeks. Hoping to continue this improvement.

 

[Kisleeh]

My Crohn's has been relatively mild since diagnosed on '95. Only four major flares over the years. Do have fistulas but those too have been mild. I tend to suffer more from abdominal pain, cold sores and gum tenderness only on the right side of mouth, fatigue, joint pain mostly in my hands, and lack of apatite. For a long time Pentasa and Purinethol (6mp) has been my standards meds, but taking large amount of pills for so long is hard, yet it worked. About four years ago, I started Remicade and was thrilled with the results. Was this what it felt like to be normal?! About a year and a half into Remicade, I started having psoriasis flare up all over my body within a month and I wasn't having any issues prior. So I took a bit of a break and then started on Humira and I wasn't able to make it every other week injections. I had to take Humira weekly but then about year in, I flared up with the psoriasis again. So that was that.
I had developed an allergy to both... Wonderful. Not fair.
Then in June, Dr. suggested Entyvio.
So I have had just two infusions of Entyvio and the third is on Monday. I am not quite sure if this will be as good as the Remicade. The first thing I noticed was the gum sensitivity went away. Hooray! But after the 2nd infusion I flared a bit and self medicated myself with a push of Pentasa for about 4 days.
But the one thing I find concerning is that I have been experiencing gut pain with gas more then usual. I haven't changed my diet and I don't do fiber well in the first place so high fiber items are out. What I am sincerely hoping that this all part of the drug settling in and my guts are experiencing a transition. For the joint pain there is no relief as of yet. After racking leaves my hands were swollen.
When I was taking Remicade, I would start to putter out at 6 weeks. So they gave me a steroid like shot in the IV to help with accepting the Remicade. Since Entyvio is so new they don't know if this something that could apply here.
The office I go to is supportive but there is no structure for feedback for what is going on. So looking forward to hearing how Entyvio is going to treat us all! Thanks!

 

[tricia_c]

Kisleeh - I have psoriasis, psoriatic arthritis, and UC. In early May I started taking methotrexate injections 1 x 25mg/week. The psoriasis cleared almost immediately, and I've had no joint pain. Possibly something you could add to your regimen? I just had my third Entyvio infusion Friday (week 6) and (fingers crossed) I think it's starting to make a difference, no side effects, frequency is much less, no diarrhea, mushy to formed stools, I'm very encouraged. Have an appointment Monday with doc, I'm expecting he'll schedule a flex sig or colonoscopy to check inflammation level, in the meantime, quality of life has improved for now at least!

 

[supportspouse]

I have been watching the group. Appreciate all that you share. Although I am not the patient my significant other had the first Entyvio dose on 9/24. Not sure how this magic "pill" will work but the others haven't been very responsive. The side effects from this first dose have included the stated joint pain, headaches, nausea and exhaustion, but last much longer or are more intense. It has been 5 days and still exhausted. Also the nausea has not subsided and after a meal of any type can't hold the food down. The one positive is no flare.

Although realize different for all those of you on Entyvio and with side effects have you noticed compared to other "biologics":
Longer period of being impacted by side effects?
After certain number of doses any observation of the side effects decreasing in duration?
or intensity?

Thanks in advance and good luck to all of you in your battle with this disease.

 

[they call it a come back]

I have been silent for awhile, but I am semi here lol. I was terrified of infusion 3, and it came and I waited to fall, it took so long so I thought it wasnt so bad, but it came in like a lamb and went out as a lion. My joints ache so bad some days I cant even move, I throw up all the time, my head aches, and I am so tired there isnt even a word for it. I am so ready to throw in the towel, I actually asked my doctor why do you have to kill the rest of me to make one part okay, and not fixed just okay. I am waiting on a colonoscopy to see if anything is even a little better, that I can handle.does anyone else get the crazy question do you feel any better, I find it obsurd, how would I know. my daughter asked me why cant you tell if it works I said crohns is like a dragon, it goes to sleep , and wakes up roaring, setting fire to everything in its wake, but it does hibernate. My point is when will you ever know if your better if you dont remember what better feels like anymore. I try so hard and get nowhere, my pain eased some in the beginning, but now the dragon has awoke, I was told sometime number 3 can do this, give it sometime, so I will.

I have one more thing to add, I have a hepatic adenoma, which I cannot have removed, or loose half my liver, so I had radiation a year ago, it had shrunk some, but in the last week has begun to give me sharp breathe taking pain. I need to have my embolization again, but I am scared. Last time my anesthesia did not work so I stayed awake for 4 hours watching them run a tube through my body, feeling everything. I need help someone tell me if I should have it done again or an no ther option.

also has anyone had any reoccurring pain in the eti r stomach come back or is it just infusion 3

 

[Brian'sMom]

My son is just 14 and at 3rd infusion weighed only 68lbs. Because there is no data for children he gets the same dose as adults get. He hasn't had any of the side effects that have been described. Are you absolutely sure that it is the Vedo causing your symptoms or your disease causing them? Or your flare getting worse? I'd check out if anything else is happening inside your body. (This disease is such a mystery and shows itself so differently from one person to the other...frustrating for certain!)

 

[tricia_c]

they call it a come back:
Sorry to hear that you're having problems, but those symptoms/side effects seem pretty severe, I would wonder if there isn't something more going on with your health? Have you considered getting second opinions? I changed doctors last April and it has made a world of difference. Anesthesia failing is not a normal thing, is it? I had my third infusion last Friday, went well. I did notice some joint pain the last couple of days, but it's random (wrist, toe, knee) not all over, and easily remedied with a couple of Aleve tables. I think it may be my usual fall/winter psoriatic arthritis flare ups. Hope things get better for you soon.

 

[Kisleeh]

Kisleeh - I have psoriasis, psoriatic arthritis, and UC. In early May I started taking methotrexate injections 1 x 25mg/week. The psoriasis cleared almost immediately, and I've had no joint pain. Possibly something you could add to your regimen? I just had my third Entyvio infusion Friday (week 6) and (fingers crossed) I think it's starting to make a difference, no side effects, frequency is much less, no diarrhea, mushy to formed stools, I'm very encouraged. Have an appointment Monday with doc, I'm expecting he'll schedule a flex sig or colonoscopy to check inflammation level, in the meantime, quality of life has improved for now at least!

Thank you! I will add that medication to my list to research.

 

[Kisleeh]

Had my third Entyvio infusion yesterday and again had fever, aches, chills, headaches and generally felt unwell. Today mostly only headache. Have actually been feeling more abdominal pain since stopping the Methotrexate and beginning Entyvio. Anyone else having same experience?

h

I am unfamiliar with this Methotrexate but I started with abdominal gut pain the 2nd week after my second Entyvio infusion and it hasn't let up. Just had my third infusion two days ago with no change. Today I hurt so bad I left work. More bloating pain with such pressure that felt like I was I going to rupture. I don't even feel much of appetite.
Didn't have any fever or chills but definitely felt medicated. Later I got to feeling sleepy fatigue.

 

[they call it a come back]

they call it a come back:
Sorry to hear that you're having problems, but those symptoms/side effects seem pretty severe, I would wonder if there isn't something more going on with your health? Have you considered getting second opinions? I changed doctors last April and it has made a world of difference. Anesthesia failing is not a normal thing, is it? I had my third infusion last Friday, went well. I did notice some joint pain the last couple of days, but it's random (wrist, toe, knee) not all over, and easily remedied with a couple of Aleve tables. I think it may be my usual fall/winter psoriatic arthritis flare ups. Hope things get better for you soon.

Thanks for the thoughts, and I have to agree and have been told I am on the exteme end of the side effects. I am even starting to wonder if I am allergic to something in this med. My doctor awhile back sent me to a larger better hospital and I am just unrepsonsive. And I hope the anesthesia thing isnt normal, they said I fought it off too much, but with as much as they gave me it could have put out three grown men, i was told you wont remember in a few minutes, after three injections of that stuff, i still remeber everything. They keep asking me if i wanted them to stop but i drove 4 hours, stayed over night in a hotel, i was not going home. Next time i am not letting them touch me till i am out, but I have had anesthesia since and went out just fine, so I blame them, something went wrong. I hope your joint pains stay mild, and could just be a flare. I do believe something else is wrong, but I am trying to give this med its justice. Number 4 is on the 12 of November so my plan is to figure it out before then. If I am not better by monday I may have to go get admitted as bad as I dont want to, I spent 3weeks in the hospital in a two month span, so needless to say I dont want to go. My niece has her birthday party this weekend so I am waiting till that is over. I know if I go to my doctor and he see's me he will see it all over my face. I am a little rough. Praying all goes well lb for you, and thanks for the advice.

 

[Brian'sMom]

They call it a come back, Please promise to get things checked out. My sister in Law had UC.. then they wondered if it was Crohns... She got way different health care than my son, who is a child. I think being an adult you really really need to be careful and be an advocate for yourself. They watch kids so much closer. My sister in law's potassium levels got really low due to diarrhea for an extended period of time and she was still not admitted. She also was worried about what that would cost. She ended up having a cardiac episode and collapsed. Too much time passed with no oxygen and by the time they got her heart restarted there was too much brain damage and she died. She was only 38. So please don't ignore symptoms that may not be a side effect of Vedo. Get it checked out!

 

[SKCARR]

Has anyone got a flu shot while on entyvio? I have always got one in the past but wasn't sure about getting one now. I just finished my 3rd loading dose. When my doctor called the drug rep to ask her answer was "if the benefits out way the risk"
Just wondering what others have experienced

 

[LandShark]

SKCARR, I plan to get my flu shot this year. I've been on just about everything for Crohn's, and I have always been advised to get the vaccine - you do not want influenza while immunocompromised. However, the flumist is not an option for us, as it's a live vaccine (general rule of thumb: killed vaccines are usually okay, live vaccines are not). They haven't come around with the flu shot at my place of employment yet, but I'll let you know how I fare once they do (I get it for free here)...

I had my third infusion on Tuesday. To be honest, I can't really say how I'm doing. Both my gastro's nurse (had an appointment before the infusion) and the infusion nurse said that I'm looking better (people at work have also noted it), and prior to this infusion, I was having an easier time getting out of bed in the mornings and having more energy throughout the day (that started about a week ago), but I can't say I'm seeing an improvement in my gut (I was for awhile, early on, but then went off LDN and things have been up and down since). However, through it all, I'm still making it through the night without any bathroom trips, which is (for me) a very good sign. As for side effects, I'm still getting the fatigue/wobbly feeling two days post-infusion, but I can manage it. I hope to see a change soon, but I know that this can take some time (and I know my gut has a lot of healing to do)...I'm encouraged seeing that some of us are starting to see results.

 

[Kisleeh]

Went for an appointment this morning to figure out the gut pain. I may have missed this point about staying on my Pentasa and 6mp starting Entyvio, never the less I came away with a better perspective. I was treating Entyvio the way I treated Remicade in which I didn't take other meds. with.
I am going to start back again on Pentasa and 6mp. I also learned the trials for Entyvio showed that Crohn's patients took longer than UC patients in feeling better. The UK trials strictly went from current medication usage and adding Entyvio which were successful, then in turn weaning off the original meds. Which again was successful.
So more to be patience about and for me to stop comparing to Remicade.

 

[Wildanimalpark]

Always learning.....
Had the third dose and the side effects seem less. Tired for two days fewer headaches...the joint pain in the hip and arms is just as bad as before Entyvio.

Had our appointment with Dr. Sandborn and he made us aware of other things that could cause the symptoms if Crohn's is ruled out.

For years my daughter has complained of pain in her stomach but the blood work and other test say she has no active inflammation. This is where the looks of doubt arrive.

The current testing indicates that the Crohn's is under control and not active. If it was still active he was going to add MTX or 6MP to assist the Entyvio.

A new diagnosis: the bile acid receptors at the end of the small intestine stop working many times after surgery allowing bile to enter the colon causing diarrhea. Trying Questran, cholestyramine, to absorb excess bile.

The stomach/ab pain that is so severe, go figure, IBS, stomach and intestinal cramping treated with Dicyclomine.

I did not remember to ask about the joint pain/pelvic pain.

Our trip to San Diego has yielded hope where non resided.I hope these new diagnosis are correct and that the drugs will offer her relief.

The question that will never be answered is what put the Crohn's in remission, Humira, 6MP, or Entyvio....

 

[they call it a come back]

They call it a come back, Please promise to get things checked out. My sister in Law had UC.. then they wondered if it was Crohns... She got way different health care than my son, who is a child. I think being an adult you really really need to be careful and be an advocate for yourself. They watch kids so much closer. My sister in law's potassium levels got really low due to diarrhea for an extended period of time and she was still not admitted. She also was worried about what that would cost. She ended up having a cardiac episode and collapsed. Too much time passed with no oxygen and by the time they got her heart restarted there was too much brain damage and she died. She was only 38. So please don't ignore symptoms that may not be a side effect of Vedo. Get it checked out!

Thanks for the advice, I called my gastro and told them I wanted my potassium checked, I never thought about that. I had already noticed I was dehydrated, and usually my potassium is low then too. I guess my mind isnt working so well, but that could be the low potassium

 

[tricia_c]

Has anyone got a flu shot while on entyvio? I have always got one in the past but wasn't sure about getting one now. I just finished my 3rd loading dose. When my doctor called the drug rep to ask her answer was "if the benefits out way the risk"
Just wondering what others have experienced

Both my rheumatologist and gastro have advised me to get a flu shot. I've gotten a flu shot with every biologic I've been on (Enbrel, Humira, Remicade, and now Entyvio). What I've been told not to do is get any vaccination that uses LIVE virus (FluMist, the vaccine for shingles)

 

[dave13]

Entyvio is new to me.I see my colorectal surgeon next week for a post-fistulotomy seton/fistula check and will ask him about it.I'm on Remicade now.It's good to know about options.

 

[kkaras]

Hi all!

Just received my first Entyvio infusion about a week ago after almost two months of fighting with the insurance company. We've been waiting for this for almost two years now so we have so much hope that this can be the miracle drug! That being said, since receiving my first infusion, I have felt worse than I've felt in a while. I've had cold symptoms, flu symptoms, horrible headaches, joint pain and extreme abdominal pain and GI symptoms. I've gone from going 3-5 times a day and occasionally sleeping through the night to 10-15 times a day and going at least 3 times during the night. The day after my infusion I felt amazing. Day two began this excruciating phase. Has anyone else had these horrible side effects? And if so, how long did they last?

We need some good news so I'm hoping this is oddly the storm before the calm..? Hoping you all are having a better experience with Entyvio!

Any thoughts would be much appreciated! Thank you so much!

 

[Wildanimalpark]

It seems the side effects are all over the place....much like our Crohn's symptoms. Like the autism spectrum I believe we will one day see a spectrum of labels for different Crohn's...ie Crohn's Type 1 or 2 or 3 or 4. My daughter's symptoms seem so much different than others and her reactions to drugs are different.

All of the biologicals seem to take at least 12 weeks to kick in. I hope you get some relief soon. Have you considered prednisone, MTX or 6MP until it does kick in?

The third dose for my daughter has fewer side effects, the headaches are gone, the joint pain remains, the stools change every three days. and the nausea is reduced.

Hope you get relief soon.

 

[Kisleeh]

I had my third dose of Entyvio and four days after, the abdominal pain went away. There is slight tenderness there but not this all day affair of bloating pain. Off and on I have nausea. This weekend I felt fatigued and rested. Lots of sleep and nothing else much. The joint pain is still in my hands. I have yet to take any Tylenol. I reserve the Tylenol for the extremes, such as after yard work.

Granted I have had a few doses of Pentasa since seeing the Dr. after the third infusion,so some of that may be playing a part as well. Looking back I would have like to have known my experience starting Entyvio with the Pentasa and 6mp.
For me the abdominal pain was the worst when I wasn't moving around. Having a desk job was the worst and during the night. If I could have slept while walking to relieve the pain, I think I would have given it a chance.

 

[duh panda]

I had my second dose of Entyvio last Tuesday and how I felt after was almost identical, if slightly less acute, compared to after the first infusion.

Cons:

A slight increase in exhaustion for 24-32ish hours after kicking in almost instantly (present 24/7 even at my "best" for a year in college - just a bit more foggy mentally following the infusion).
Headache 2 days after that starts as just really bad shoulder/ neck tension and works its way up - took Tylenol this time instead of waiting to see what would happen and haven't had any issues there since.
Joint pain - makes it difficult to walk but it decreased enough by around the time the headache kicked in where I was able to enjoy my daily walk.

Pros:
# BM's - down from 3+ a day following first infusion (was 5+ before first) to 1, just waiting for timing to regulate because right now my body seems to like 4AM - and I'm just not that much of a fan being woken up that early. Also consistency was formed for the first time in 2 months since officially becoming steroid dependent.
Slept through the night for the first time in months.
I feel HUNGRY for the first time in... well I can't remember the last time I felt hungry and not just pain without first smoking a joint (or 2) - not even from the Prednisone I've been on the past 6 months.
Less nausea and upper GI pain (discovered after running out of Omeprozole which I usually take before breakfast and dinner - before Entyvio the pain/ burning would drop me once it started hitting and never eased up completely, now what burn I do notice doesn't last long and is easy to tolerate).

I did notice a huge increase in pain the 2-3 days before my second infusion and blacked out/ passed out in the bathroom from it one sleepless night. The difference since starting Entyvio has been gradual in all areas - but very noticeable. After a 2 year flare and continuing to fail meds, etc. it truly is a relief. Just hoping things keep moving this direction!

For those who have completed their loading doses did you feel more symptomy in the days leading up to your 2nd/ 3rd or if you're nearing/ on it 4th infusions?