Entyvio (Vedolizumab) Support Group

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I've been following this thread since July when we decided to switch from Cimzia to Entyvio but until three weeks ago my insurance wasn't approving it. They finally did and my doc insisted I wait three weeks so the Cimzia was out of my system (I was getting shots every two weeks instead of once a month). Well the day has finally arrived, tomorrow is my first infusion... And to be brutally honest, I'm terrified. I had an anaphylactic reaction to Remicade even though I did the test for antibodies and it was negative. I had severe side effects with Humira years ago and had to stop taking it, and Cimzia was just enough to get me by without being in the hospital. I know this is going to take weeks to work and I've been surviving mostly on nutritional shakes, but I'm just worried that my body can't take much more. Reading the clinical trial information was scary, there was only one report of the 1434 patients that had anaphylaxis, four became septic and two of those died, while six developed some sort of cancer. I'm hoping that I can be as successful as most of you have been with Entyvio, at least that I don't get more side effects with it. Good luck to you guys, I'll let you know how it goes.
 
Entyvio now approved for every 4 weeks for those who's response stopped on the 8 week regimen.

http://www.medicalnewstoday.com/releases/283466.php

Just had my 2nd infusion. Seems to be helping. definitely feeling better overall more energy no fatigue or other issues. The proof will be when I start coming off the 30 mg/d pred. And the fistula heals up. But so far my esr is down from 30 to 15 so that's good.
 
Had my first infusion. Took two plus hours and I had an anaphylactic reaction. They stopped the meds and gave me IV steroids and benadryl and was able to finish the infusion. I'm extremely exhausted but that could be from the immense pain that came with the reaction. Two weeks and I'll get the second one but with premeds before.
 
Robrich said:
Entyvio now approved for every 4 weeks for those who's response stopped on the 8 week regimen.

http://www.medicalnewstoday.com/releases/283466.php

Just had my 2nd infusion. Seems to be helping. definitely feeling better overall more energy no fatigue or other issues. The proof will be when I start coming off the 30 mg/d pred. And the fistula heals up. But so far my esr is down from 30 to 15 so that's good.
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So good to know. I had trouble making to 8 weeks with Remicade and it has been on my mind whether I will be the same with Entyvio
 
Hi all,

I've been following this thread for awhile but decided to join since I was just approved by my insurance for Entyvio! I'm worried about getting substantially worse waiting for it to start working, so I was wondering what those of you who have started your infusions are taking to get by while waiting for the Entyvio to kick in. I know that I can't stay on Humira while getting the loading doses and my doctor thinks that Uceris (even though I have Crohn's) will be enough to get me by, but I wanted to see what is/isn't working for those of you that have already started on Entyvio.
 
Hey K_dubs,

I was completely steroid dependent before starting on the Entyvio upon failing Cimzia early summer and Humira shortly before that - we just kept upping my pred. dose until I hit something that held/ kept the more worrisome symptoms like bleeding at bay for the most part - especially with a lot of dietary management. Still on this dose but hoping to start tapering pretty soon as I get through the loading doses. Wishing you all the best as you get started! The period between coming off cimzia completely and waiting on the Entyvio to start was certainly a test for my patience!
 
Hi, I wanted to see if anybody has had any side effects associated with Entyvio. I had my first infusion done Monday morning 10/6/14 and noticed the next morning i woke up with extreme joint pain in my R shoulder, as well as my R pelvis. Today I am having very painful joint pain in my neck as well as a soreness feeling in both sides of my cheek bones. Has any body had these symptoms? I have a hunch on what is causing this joint pain, because 2 weeks prior to having the entyvio I had the same type of joint pain in my neck and back, so bad i could barely turn my neck. Almost went and bought a soft c-collar to secure my neck from turning. My hunch is being off my remicade for 5 weeks now is causing it. I normally would get my infusion of remicade at the 3 week mark because of having a flare up. I know that is way way to soon but i couldn't take the pain of mouth ulcers.
 
Nearly two weeks after the third infusion of Entyvio and today I was quite nauseous. Nearly felt like leaving work to curl up in bed. But I toughed it out and ate healthy lite for the rest of the day. There certainly seems to be a "yo-yo" effect in starting Entyvio. Some days are really good and others not. I can start the day cruddy and then end well. I can a have few hours of just painful joint inflammation and then feel so energized I could clean the whole the house and then kaput.
Even though there seems to this yo-yo effect happening I do feel I am climbing my way up in feeling something good is happening, but I just can't put my finger on it yet. Remicade was such an upper kind of an energy and then the crash, where I don't feel this kind of an extreme with the Entyvio. Now the real test is heading into infusion #4, which is in the middle of November.
 
ctaylor_91 said:
Hi, I wanted to see if anybody has had any side effects associated with Entyvio. I had my first infusion done Monday morning 10/6/14 and noticed the next morning i woke up with extreme joint pain in my R shoulder, as well as my R pelvis. Today I am having very painful joint pain in my neck as well as a soreness feeling in both sides of my cheek bones. Has any body had these symptoms? I have a hunch on what is causing this joint pain, because 2 weeks prior to having the entyvio I had the same type of joint pain in my neck and back, so bad i could barely turn my neck. Almost went and bought a soft c-collar to secure my neck from turning. My hunch is being off my remicade for 5 weeks now is causing it. I normally would get my infusion of remicade at the 3 week mark because of having a flare up. I know that is way way to soon but i couldn't take the pain of mouth ulcers.
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One of my earliest symptom relief starting Entyvio was my continuous gum soreness/inflammation on my right side. The redness and swelling was gone after my 2nd infusion. My indicator whether I was beginning to flare was my right side of face would get that sensitive, tingling hurt and I would get the mouth ulcers. Even when I wasn't flaring I would never let the dental hygienist floss my teeth I was that sensitive. I also keep Valtrex handy when I get the mouth ulcers, especially when I can feel them coming on, whether inside or outside of mouth. It helps them from getting out of hand and to heal. Hang in there. I hope you find some relief soon.
 
k_dubs25, I'm on Uceris. I find it fairly helpful (and without most of the prednisone side effects). I was pleasantly surprised by it, given that Entocort did nothing for me - but my Crohn's is from the terminal ileum down, which is where Uceris is released. If your problems are predominantly in the colon, you may find Uceris helpful.

I'm a little over a week out from my third infusion. I think it's helping (frequency is dropping a bit, consistency is improving), but it's pretty hard to tell...the fatigue after this infusion was just brutal - I'm only now coming out of it (though I'm also fighting an upper respiratory bug, which may have something to do with it, too). I'm trying to stay positive. Before this last infusion, I really was starting to feel more energetic, and people were telling me I looked much better. This week, not so much (it's never good when everyone at work tries to tell you, delicately, that you look like Hell and should perhaps go home).
 
Thanks for your insight duh panda and LandShark! It sounds like Uceris might have been good for me then since my inflammation is only in the colon, but unfortunately my insurance company refuses to cover it since my diagnosis is not "mild to moderate ulcerative colitis". I started Entocort on Wednesday which I'm hoping provides some help, but since 40 mg of Prednisone did nothing when this flare started I'm not holding my breath.
 
Hello. I haven't posted here before but have been reading this forum since starting Entyvio. I am 40 years old and have had crohn's for 24 years. I have 180 cm of bowel left and Entyvio is my last hope, as I have been on all the other drugs and had some bad reactions to the TNF's and am no longer able to take those. I have also tried many, many things and spent lots of money, trying alternative treatments.

I had my 3rd Entyvio infusion on this past Friday. I am on Prednisone, 30 mg and Imuran, 100 mg. Since Friday, I have had horrible back aches and really bad abdominal pain. Everytime I eat, my stomach seems to fill up so quickly and I feel very full and my stomach becomes distended. This is followed by gas pain and lots of bloating. :0(

We live in Illinois and I have a local GI here, though he is not much help and I would love to change Dr.s. However, I am also seen by a terrific Dr at Mayo Clinic in Minnesota, who is simply terrific so we travel up there for appointments, tests, etc. I have my Dr. here only because someone local has to order the infusion of the Entyvio.

Last week, I noticed some balance problems and have been having major mood swings and brain fog. I have noticed this since starting the Entyvio and it seems to be getting progressively worse. However, I am also on the prednisone so it is hard to tell what med is causing which symptoms. I went to a Dr. last week because of my balance issues and mood swings and he immediately decided (after only reading about Entyvio right before he walked into see me), that I could have PML. I was referred to the local E.R. and went the next day and had an MRI of my brain. Again, the Dr.'s there also knew nothing about the Entyvio....I even had to spell it and tell them about it. My MRI showed no PML, according to the ER Doctor but Mayo saw a copy of it and said that there are some other things that they would like to invstigate further, but assured me that they did not think it was PML either. My Dr. at Mayo told my husband and I when we were there for tests this past August that she feels that Entyvio is safer than Remicade, in her opinion and that there is not a "real" risk of PML. We trust her, completely, which is why I decided to take the drug.

But now, this pain is horrible.....I think that I would rather be going to the restroom 15 plus times a day again, like I was last week. The change has been very quick and now the isssue is that I am passing small amounts (pieces, if you will), of formed stool. I also have a slight fever.

During my visit in August, Mayo saw that I have more narrowing and they told me that surgery was probably in my near future but with the small amount of bowel that I have, that we should wait until it was completely necessary and the hope was that the Entyvio would help and I wouldn't need surgery.

It is strange to me, but my gas and bloating symptoms have gotten much worse since I started the Entyvio. It is almost like the Entyvio has caused more inflammation to occur......though I am not an expert. I just know that I feel progressively worse, after each dose. I am frustrated and feeling quite hopeless. I was wondering if there were others who may have experienced this and what your thoughts were. I am not sure what they next plan would be for me. I am nervous about having another surgery, even though I have a terrific surgeon at Mayo and he would be doing strictureoplasties (spelling I know is wrong).

Thanks for listening.

Amy
 
Does it seem like those of you that are having reactions are also taking other meds? Prednisone I've seen a couple times. Do you think there could be an interaction? My son hasn't had any of the side effects mentioned here (hopefully it stays that way!) and he also is taking nothing else along with it.
 
Amy, I ve had 2entyvio infusions am also on 30 mg pred 6 mg entocort and augmentin
So far no side effects feeling a bit better overall but not able to taper pred yet.
Is your disease in both small and large bowel?
2 things you may want to try is entocort vs. pred if your disease is small bowel and does not extend to the rectum.
You may also want to try some antibiotics cipro Flagyl augmentin even rifaximin which is for small bowel bacterial overgrowth
Many crohns patients suffer from an overgrowth of bad bacteria and most GIs ignore that
This can cause D and gas bloating and pain
Antibiotics can clear it out just be sure to take high quality probiotics and fermented foods during and after.
I would do anything before more surgery even elemental diet like absorb plus.
Brian's mom unfortunately everyone is different in their chemistry so no rule f thumb except always be cognizant of drug interactions and side effects
 
Amy - it seems the abdominal pain is occurring with these start infusions. (Not that I want to generalize) Mine was after my 2nd and it was awful. Constant pain and didn't matter what I ate or didn't eat. Even now I have a bit pain and bloating that kicks up, but it doesn't last. I have been experiencing nausea now to the point that getting sick is close at hand and then it passes. Eating lite most of the day and eating an okay supper. I can say something is changing in my intestinal health. Maybe this is some sort of metamorphosis into a true working digestive system. I don't know. I am keeping as optimistic as I can. Nothing comes easy without some obstacles and hopefully gut pain and nausea will be a few of these. My Dr. seemed to have the attitude of hanging in there and that this isn't an adverse reaction. Keep hydrated though. That didn't solve the pain but at least I didn't feel totally constipated.
 
I also experiencing abdominal pain after my 2nd infusion. I even woke up from the pain I thought I had to run to the ER. Thankfully, the pain subsided after 2 tylenols. I constantly have abdominal cramps, but no nausea. I am scheduled for 3rd infusion next week (Oct 23). I was on Tysabri for 2 years but tested positive for the JCV virus (which causes PML). I was symptom free while on Tysabri, my intestines looked as if I never had Crohn's. From what I was told, Entyvio is just like Tysabri but without the risk of PML (brain damage/death).
 
I go in for my 4th infusion next week, and I have to say that I've really started to see great results. My stools are well-formed everyday, my appetite has returned, and I'm dying to get back into the gym.

Anyone else that started in July/August feeling the same?
 
ctaylor_91 said:
Hi, I wanted to see if anybody has had any side effects associated with Entyvio. I had my first infusion done Monday morning 10/6/14 and noticed the next morning i woke up with extreme joint pain in my R shoulder, as well as my R pelvis. Today I am having very painful joint pain in my neck as well as a soreness feeling in both sides of my cheek bones. Has any body had these symptoms? I have a hunch on what is causing this joint pain, because 2 weeks prior to having the entyvio I had the same type of joint pain in my neck and back, so bad i could barely turn my neck. Almost went and bought a soft c-collar to secure my neck from turning. My hunch is being off my remicade for 5 weeks now is causing it. I normally would get my infusion of remicade at the 3 week mark because of having a flare up. I know that is way way to soon but i couldn't take the pain of mouth ulcers.
Click to expand...

My neck sounds like yours, it is completely locked up. I too had came off the remicade before the entyvio, I have been on it since july and I think I may be failing this med too, so if you find any relief me know.
 
sully1102 said:
I go in for my 4th infusion next week, and I have to say that I've really started to see great results. My stools are well-formed everyday, my appetite has returned, and I'm dying to get back into the gym.

Anyone else that started in July/August feeling the same?
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I didn't start Entyvio that long ago (go in for 3rd infusion on the 28th) but was feeling noticeably better within a week of the 1st, and since the 2nd I've only noticed it get better and better. I started weight training and incorporating yoga back into my days just before my 2nd infusion; which combined with a diet plan I'm hitting my 2lb/ week gaining goals and am up 10lbs. from my lowest weight just before starting Entyvio - which just happens to be the highest weight I've been able to hit/ maintain in a year and a half.

I've noticed I'm feeling HUNGRY which wasn't happening before even with 40mg of pred. and have also been able to begin tapering the pred. (will drop to 20mg on 28th - lowest dose I've tolerated without backsliding since May).
 
My son started early August. And things were a mess for him going into this. Sept he had an abscess... but since then everything seems to be slowly getting better. His mouth is not a problem anymore. His eyes---inflammation gone. And he's been going to school with no problems. He's still not gaining weight or height but his labs that were done 2 days ago show his SED went from 78 to 37. And his CRP went from 3.6 to 2.7 and His Hemoglobin went from 9.5 to 11.3... So we are holding our breath. Could this be working for him?!! Surgery to remove his large bowel has been put on hold. His next infusion is Nov 19th. That would be his 4th. He's had no bad side effects from the Vedo. He's also on nothing but Vedo. I really hope this works for us, my son needs a break. He's only 14 and wants to just be a kid! Play with friends and go to school.
 
Hi Everyone!

Started Entyvio not too long ago, scheduled for my 3rd infusion next week! I feel as if I can't tell if I feel better or not. Did those taking it see drastic changes in how they feel, or was it small changes? I feel like I've been analyzing every little tiny detail of my health for so long that it has become difficult to notice the small things until they become bigger changes.
 
I asked my colorectal surgeon about Entyvio this week at my three month fistulotomy post-op visit.He said it wasn't approved for fistulas and to ask my GI about it because he didn't know much about it and my GI would know more.I expected a bit of dialogue but he was adamant I talk with my GI.So I will.

I just want to see how and if it would help me.I have active fistulas and setons.I had a resection in my jejunum last November.I had a sbft this June that showed the resection site is doing well and no inflammation shown in the GI tract that the test covers.

I want to know my options.Is Entyvio for something specific? ie strictures,etc.
 
I've been on Entyvio for 3.5 weeks now ( I've had 2 infusions). I'm on Budesonide to carry me through the next couple months while Entyvio builds up to therapeutic levels. My Crohns is in the terminal ileum and very small bit of the colon. I have ulcers and stricturing primarily with joint, low back, and anal involvement. Also have been severely anemic and receiving weekly iron infusions for 1 year. Had 1 resection 6 years ago. Relapsed immediately, despite having had all disease removed. Partial response to remicade and lost it within a year.

This past week I've noticed some abdominal pain that is not characteristic of what I usually have- it's more of an all over burning as opposed to being more intense, crampy, and focussed oin the lower right abdomen. The weirdest thing is that despite the pain, im hungry!!! I am 20 pounds underweight, so this is different. It could easily be the budesonide ( which has lost effectiveness, for the most part), but I'm wondering if anyone else has had a similar experience?

Thanks!
 
04jag_2 said:
This past week I've noticed some abdominal pain that is not characteristic of what I usually have- it's more of an all over burning as opposed to being more intense, crampy, and focussed oin the lower right abdomen. The weirdest thing is that despite the pain, im hungry!!! I am 20 pounds underweight, so this is different. It could easily be the budesonide ( which has lost effectiveness, for the most part), but I'm wondering if anyone else has had a similar experience?
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The couple days before my second and now 3rd infusion I also feel a general burning/ inflamed feeling throughout my entire gut.

Before Entyvio I experienced something similar in combination with the usual stabby, cramping pains along the lower corners of my abdomen, but it was primarily experienced in my upper GI and present 24/7 where the burning felt now tends to show up mid-day and simmer down at night enough for me to sleep soundly. I've also noticed more bloating in the days leading up and directly after infusion, which brings its own pain - seems like the two are connected to me; although it is far more manageable then anything I was experiencing before starting on Entyvio!
 
Thanks for your reply! So, we have some minor consensus on hunger and all over burning- interesting, bc I've noticed the burning more mid day as well, though yesterday it persisted into evening.. It also seems to follow eating which I keep doing! I also take an herbal pain remedy, so I do notice it more when that wears off... Agreed- burning is way better than intense cramping!
 
04jag_2, I've been experiencing something like that...I'm 10 weeks in (4 weeks from my 4th infusion). It is settling down now, but I have had higher levels of pain which isn't really like my Crohn's pain - it's hard to describe...I wouldn't call it burning, but it isn't my typical cramping, either. I'm hoping it bodes well, as I have experienced this kind of pain when coming out of a flare in the past (so, while healing...maybe I've got confused neurons somewhere - the worst day for this that I had was my best gut day so far...wacky).

I do think I'm doing a bit better, but I have a long ways to go. As many others here have said, I have good days and bad days, but the overall trajectory seems to be upwards (hopefully I am not imagining this!). My energy level has gone way up in the last week, too, which is wonderful.

(and yes, my appetite has improved substantially, I may even have gained a couple pounds)
 
Interesting- the nurses at my infusion center did say that abdominal pain is the one side effect that they've seen consistently. I hope it is a sign of healing, as you said. And appetite- well that is always a good sign for IBDers. I'm cautiously optimistic. I guess I'll know for sure in a couple months whether or not to celebrate. I do love the fact that all the side effects I was having from Remicade are gone! Happiness and healing to you all!
 
I finally went for my first infusion yesterday! Pretty easy process, from check-in to leaving was a little over an hour. I definitely had the fatigue though; my infusion was at 3 pm and by 7 pm I was passed out on the couch. Other than that nothing out of the ordinary. Trying to remain cautiously optimistic and looking forward to the next infusion!
 
K_dubs- good luck with a speedy response and recovery!

So, it's only been a month on Entyvio for me ( 3rd infusion in 2 weeks), and I'm fairly certain that I'm responding! I didn't think I'd see any progress until week 10, so this is taking me by surprise. My bleeding has stopped😊, my appetite is much better, and pain and tenderness is minimal. I have even gained a few pounds ( desperately needed!). At first I thought this was just regular Crohn's cycling on and off except that there are some pronounced qualitative differences like increased gas 😳 and a little bit of all over burning/ abdominal discomfort that doesn't feel like Crohn's at all. Well- I hope I'm right about this- the real test will be to see if my anemia begins to subside- that is the one reliable indicator of disease activity in my bloodwork. CRP and Sed. Rate are usually in the normal range even while I'm flaring. I'm so ready for a break after these last 5 or so years of pretty constant flaring. I had almost lost all faith in Western medicine... Here's to hoping that this trend continues- I guess we're never really out of the woods. If you are not responding yet, don't lose hope- hang in- it gets better.
 
04jag_2 said:
Interesting- the nurses at my infusion center did say that abdominal pain is the one side effect that they've seen consistently. I hope it is a sign of healing, as you said.
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I can echo the abdominal pain observation. For about the first month on entyvio I had it pretty regularly. But hang tight --for me not only did it go away, I just had a flex sig and we observed reduction in inflammation at my anastamosis site (where my problems always occur). There was some scarring brought on by the healing process but we dilated the stricture and the prognosis is FAR better than before entyvio. It just takes forever to start working. Now if only we could figure out my bacterial overgrowth (but that's another post for another thread).

hope everyone is doing well
 
sk12383 said:
Now if only we could figure out my bacterial overgrowth (but that's another post for another thread).



hope everyone is doing well
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I think Entyvio may actually contribute to bacterial overgrowth by the way it suppresses immune activity in the gut ( therefore allowing bacteria to overgrow). I have had it really badly in the past and I feel it coming back with Entyvio. If you haven't tried this already, here are two things that have worked for me: 1) cut way back on sugars (a little fructose is actually ok) as well as complex carbs like whole grains and beans- even try lowering starches like rice and potato. 2) Florastor- twice a day. Amazing stuff.
 
I had my second infusion on the 21st. Was given premeds of Benadryl and Steroids and didn't have any anaphylactic reaction! My nurse spoke with the manufacturer about my first infusion and the anaphylactic reaction and they were floored, said they've never heard of anyone having that issue, guess I'm just lucky.
I've also been experiencing a great deal of abdominal pain and I'm just hoping that it's the medication working. I've been experiencing a great deal of constipation since my second infusion, to the extent where I begin to get impacted. Dr suggested adding fiber to my diet which always scared me before because it would make the diarrhea so much worse but I'll try anything to avoid becoming impacted.
Hopefully my third infusion will be the best one yet.
 
I finally took the leap and am getting my first Entyvio infusion next Friday. Took my last Cimzia injection today. I am currently going through fertility treatment too, so I hope Entyvio is safe for pregnancy. I don't think I'll be able to get pregnant though until this inflammation gets under control.

Anyone freaked out about the risk of PML? I know it's supposed to be lower than Tysabri, but I'm still really freaked out. Anyone have any words of wisdom from their doctor they can pass on?

Hope everyone gets relief!
 
Entyvio targets only gut and, to a lesser degree, respiratory tract cells. So, assuming it does exactly what it's designed to do, it won't touch the nervous system or pass the blood brain barrier the way Tysabri does. This means that theoretically, there is no risk of PML. Now, whether Entyvio actually conforms to the theory in practice is another thing... But there hasn't been a single case yet, so, you probably shouldn't worry about it. There is a higher risk of other serious side effects like TB and other respiratory infections or malignancies of the gut and respiratory tracts. Talk to your doc about what the statistics are- you might be better off on Entyvio than you are on Cimzia in terms of side effects. Good luck with it and with getting pregnant! Very exciting 😊! My experience with Entyvio has been fantastic so far, and I've only been on it for a month!
 
So, how is everyone doing? I know that a fair number of us are further along in treatment (3-4+ infusions done).

I'm at week 11, as of today. I would not say that I am in remission (still have a long way to go), but I do think that something is happening, and I feel more confident in saying that than I did previously. Frequency hasn't dropped much (and I think much of that is due to habit and will take time to change), but consistency is much better, I'm not as achy as I had been (I've stopped adjusting the waistband of my jeans when I sit, which I had been doing reflexively for months, I've been sleeping on my stomach(!!!), etc), and I have so much energy now. I can get out of bed (early, even!) without it being a struggle. I'm hoping that this upwards trend continues...

I hope that everyone is well, or getting there.
 
Had my 3rd infusion last Tuesday and finally starting to feeling back on my feet. Felt far more wiped this time around, although joint pain was minimal. I think a lot of how I'm feeling has to do with also working to taper off 40mg pred. Was able to tolerate 30mg just fine but at 20 started seeing a recurrence of symptoms (primarily increase in pain/ and reappearance of blood) so back to 30 for a month then we'll try once more. But, for the first time in 2 years I'm seeing solid improvements, tolerating a lower dose of pred., and while it's going to take a long while yet to get to a stable point each month is noticeably better then the last overall.

Over the last month I've certainly noticed a chance in consistency - everything on that front seems pretty normal now although this flare I really wasn't getting much frequency - primarily high pain, high blood loss, and worse fatigue/ exhaustion then I've grown to associate with the disease over the years. Only symptoms I really associate as "Crohnsie" as of today is the reappearance of blood and pain this past week, but since bumping pred. back to 30 pain has dropped significantly once again the last couple days pretty non-existent during the morning/day, bloating seems far less overall, and the burning/ fiery feel I've come to associate with the infusions is gone for now - seems like it just hits right in the 5ish days before and after infusion date. Was steadily gaining weight, finally, the last 3 weeks; and while no gains this past week after my infusion there weren't any losses either which is a HUGE win in my book!

Wishing everyone all my best!
 
Had my 3rd infusion 10/31. Had been feeling good going into it. More energy and appetite.
Hadn't been able to get under 30mg/pred. Since starting pred 6 mos ago.
Felt even better after the infusion. Had been having acute BM urgency and accidents.
That Totally stopped day after inf.#3. Dropped to 20 mg. everything still good. First time after 5-6 tries I was able to hold 20mg. Every other time within 48hrs of 20 mg pain and fatigue would return.
Entyvio is working for me.we will see how far we can take it.
Hoping to become the poster boy for entyvio like the nine great years I had with remi!
Hope it helps many more of us.
 
I guess it is time I make my announcement I have officially failed entyvio. I got my colonoscopy and I actually am worse, so I am head for surgery, my intestines were so strictured that they couldnt get the scope past certain parts and had to stop. I had so many internal hemmeroids that I woke up and was like why am I wet, I put my hand on my bed and found it covered in blood. I am scared but they seem optimistic that there may be a good connect spot so that I wont loose so much of my intestinse. So wish me luck .
 
LandShark said:
So, how is everyone doing? I know that a fair number of us are further along in treatment (3-4+ infusions done).

I hope that everyone is well, or getting there.
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Hi all--

I had my 4th infusion yesterday (8 weeks out from the third). Entyvio is definitely better than no entyvio but my results have been very inconsistent. I had a flex sig a couple weeks ago which showed improvement, reduction in ulceration, "improved appearance" was how she put it, good enough they were able to dilate my stricture.

But diarrheah is at all time high and I probably felt better a month ago than I do today.

What have you all heard about the magical 14 week mark? I keep hearing that is when you can really evaluate how it's going. For me that would have been yesterday but I'm not sure if it's 14 weeks when it should start working or if you don't feel better by then it probably won't work?
 
04jag_2 said:
Thanks for your reply! So, we have some minor consensus on hunger and all over burning- interesting, bc I've noticed the burning more mid day as well, though yesterday it persisted into evening.. It also seems to follow eating which I keep doing! I also take an herbal pain remedy, so I do notice it more when that wears off... Agreed- burning is way better than intense cramping!
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Hi If you dont mind me asking what herbal remedies hae are you on I am looking for a better pain remedy nothing really seems to work and all my gi wants to do is send me to a pain specialist and I am afraid to go and be seen in a drug clinic I dont know just my crazy fear, but if you know of anything I would be interested to find something other thanca pain clinic.
thanks in advance.
 
Memmy29 said:
I finally took the leap and am getting my first Entyvio infusion next Friday. Took my last Cimzia injection today. I am currently going through fertility treatment too, so I hope Entyvio is safe for pregnancy. I don't think I'll be able to get pregnant though until this inflammation gets under control.

Anyone freaked out about the risk of PML? I know it's supposed to be lower than Tysabri, but I'm still really freaked out. Anyone have any words of wisdom from their doctor they can pass on?

Hope everyone gets relief!
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I dont know if I would try to get pregnant on this drug, maybe because of pml even though it is low would scare me. I wanted to get pregnant too but I am taking time out for now till I recover some. But good luck if you do I had no luck, but I am lucy I have one amazing child lexi and two nieces who are just like my daughters and one says she is lol, so I am lucky but I know the struggle all too well and it can he heart retching, so empty. Hope this helps no judgement
 
they call it a come back said:
Hi If you dont mind me asking what herbal remedies hae are you on I am looking for a better pain remedy nothing really seems to work and all my gi wants to do is send me to a pain specialist and I am afraid to go and be seen in a drug clinic I dont know just my crazy fear, but if you know of anything I would be interested to find something other thanca pain clinic.

thanks in advance.
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Pm'd you 😊
 
Went for my second infusion yesterday, pretty much just the same as the first where I got extremely tired a few hours after the infusion. Apparently I'm one of about 5 currently getting Entyvio here and the one person that is far enough along to see results (nurse said he had his 4th infusion this week) said that he's feeling great. Here's hoping we all see the same results!
 
I am at 6 weeks out from my third Entyvio infusion. With two weeks to go heading to 4th infusion I am starting to feel more fatigue. Within the last two weeks I developed a mouth ulcer on inside of my right cheek and it has gotten slightly bigger while not healing, even with taking Valtrex, which cuts down the healing time. What seems odd is that I never had sores develop on that side when I begin to flare. Even two or three weeks prior a sore broke out on the roof of my mouth that hurt so bad I could feel the pain on that side of the inside nasal cavity. This too seemed out the norm for me as well.
So here's a thought. Crohn's effects the entire digestive system from small intestine to the mouth respectively. And I feel my symptom issues on entyvio have traveled up from the intestines to my mouth for me. Had the abdominal gut bloating pain with the one time incredible out of this world gut pain spasms that nearly questioned whether an ER trip was coming, nausea and next to nothing appetite for weeks, mild consistent indigestion, which never was been an issue, and now the bizarre mouth ulcers that last longer than normal. Gum soreness on the sides that never was there.
For feeling what is my regular norm for bowel movements is not the case now. I can go from questioning being constipated to have a quick run of diarrhea to then be pueny trails of nothing. (what non-Crohn's miss out - analyzing poo trends :)
So here's what I hope is taking pace that Entyvio is blazing a healthy path and this part of the jump start to getting to healthy.
Does any else feel their symptoms moving from one area to the next?
 
Yesterday I started my first dose of Cimzia and had an allergic reaction and ended up in the hospital. I tried Humira and didn't feel well off of that. A friend suggested trying to Entyvio but after my reaction yesterday, I'm scared and nervous to start a new drug. I am also trying to find something that is safe for when I decide to get pregnant. Cimzia and Entyvio are both class B which is safe for pregnancy. I have had crohns for almost 20 years and have been able to maintain it pretty well until recently.

Any suggestions?
 
keichelb88 said:
Yesterday I started my first dose of Cimzia and had an allergic reaction and ended up in the hospital. I tried Humira and didn't feel well off of that. A friend suggested trying to Entyvio but after my reaction yesterday, I'm scared and nervous to start a new drug. I am also trying to find something that is safe for when I decide to get pregnant. Cimzia and Entyvio are both class B which is safe for pregnancy. I have had crohns for almost 20 years and have been able to maintain it pretty well until recently.

Any suggestions?
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I had reactions to two of the three, Remicade (allergic), Cimzia, and Entyvio (anaphylactic). My doctor was able to premedicate me for both the Remicade and Entyvio. I still had anaphylactic shock with Remicade but not Entyvio. I would stress the importance of trying premedication like benadryl and steroids to avoid that happening. I'm able to handle the Entyvio with the mix in my IV before they start the medication.

Good luck!
 
Well, I'm one of the lucky ones with Entyvio. I was not one of the lucky ones with Remicade, which barely kept me out of the hospital. I had my third infusion of Entyvio on Friday and aside from some extreme tiredness ( hence why I scheduled it on a Friday), it's been uneventful, and wonderfully effective. I have not been in such good shape in 10 years! When this stuff works, it works!!! I realize how lucky I am, and I wish for the same for everyone else here! Maybe this provides some hope...

Wishing you all fast healing with minimal scarring...
 
I'm 2 weeks after my 4th infusion, and although I'm battling some abscesses, I'm feeling great. I'm down to 1-2 BM/day, and they're beautiful. I'm having surgery tomorrow for the remaining abscess, and I'm hoping that everything is as promised once I recover from that.
 
Hi everyone! I've never posted to this forum before.......hopefully i'm doing this right...... but I'm really glad I found it! I started Entyvio in the beginning of September, so far having 3 infusions. Everything was going really well until a few weeks ago. I noticed I get sick easily ( a lovely side effect i know), but I am having the WORST joint pain. It's in my neck, my hands and my knees to the point where it's excruciating to move some days. I'm only 27, and used to be a professional athlete before this disease really took over, so not being able to move well is killing me. The problem is, the drug is working wonderfully for my crohn's......I just think my joints are really suffering. Has anyone else had issues with joint pain? What do you do for the pain and did it ever go away?

Thanks Everyone!
 
My son had his 4th infusion last Friday. He just seems tired afterwards...but no other symptoms. By evening he seemed fine. Things seem overall better regarding the crohn's- but inflammation isn't normal yet. I think we may be scoping in February to see what's actually happening in there.
 
Just got back home from my scope to see where things were at. Sitting at 3 weeks after my 3rd infusion.

While I felt the same side effects I experienced after first two infusions (primarily worsened fatigue for a day or two then headache for a day and an increase in joint pain for 48 hours or so) there was no bounce back to feeling better/ increased energy/ hungry. Started to wake up with sore throats, see blood again, and crash hard in the afternoon napping for 3 hours when just lying down to watch a show. Dr. agreed looked like signs of infection so will be treating for that and hopefully will see the bounce back once that's gone.

To sum it all up large bowel is looking better - still signs of disease but no new or increased disease which is huge, haven't seen that all year. The growth of colitis about 50 cm in that's roughly the size of a golf ball has stayed put. No visible changes; took more biopsies just to ensure that's the case throughout it. All that said and done, small bowel remains in terrible shape. Dr. did not seem to think it's necessarily worse, but the amount of strictures and scarring makes it impossible to get the camera through and cannot be expanded with one of those little balloon dudes they use - nothing new there, but certainly an issue that needs to be addressed at some point. We kinda figure as long as it's continuing to function the benefits of something like surgery while offering high potential also offers high risk.

Therefore, will be adding another med. to treatment plan that will hopefully work with the Entyvio to manage my small bowel and upper GI better. To be discussed further in a couple weeks at an office visit after she's had some time to think it all over. Between now and then will try once more to taper off prednisone since it hasn't been effective in treating the disease, just holding it from getting worse - not really worth it.

IN THE MEAN TIME for those who are on Entyvio AND other meds not including Prednisone, what are you using with it? What was the reasoning behind your choice, if any?
 
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duh panda said:
And the lucky drug of choice is... Methotrexate. Here's to hoping it works well with Entyvio!

Anyone here on it?
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Been taking methotrexate since early May, after Cimzia failed for me (also Humira, Remicade), before Entyvio was approved, 25mg injection weekly. Was tired after the first couple of methotrexate injections, but now have no issues with it.

I also have psoriasis and psoriatic arthritis, and the methotrexate cleared the psoriasis almost immediately, the arthritis is under control, but didn't make any major improvements in the gut, and I started Entyvio in August, along with the methotrexate.

Just had my 4th Entyvio infusion yesterday, no side effects and definite improvement, going from 9-10 BMs mostly diarrhea per day down to 4-5 with less urgency, stools soft/mush, doc thinks methotrexate may be keeping stools loose and thought of discontinuing, but I reminded him how well it cleared the psoriasis, and I especially don't want to drop it now during the winter months with no sun exposure. I see him first week of Dec, expect he'll schedule a flex sig or colonoscopy to see what's going on inside. Methotrexate can be tough on the liver, so expect blood work to monitor, and doc has me taking folic acid 1mg daily to reduce side effects.

After failing Cimzia I was ready to throw in the towel and just have surgery, but my doc talked me off the ledge and I'm glad he did.
 
duh panda: i'm on oral methotrexate, 15 mgs once a week. i was on it after i failed on cimzia and while i was waiting to start entyvio. i'm still on it while i wait for the entyvio to kick in. i like MTX. it's kept me off steroids and the longer i've been on it the better it has worked. it's not enough to control my Crohn's by itself but it helps a lot. personally i've had very few side effects from it. it used to make me tired for a couple of days after taking it but now that my body is used to it i barely register a bit of extra fatigue.
 
I'm due for my second infusion Wednesday. I came off of Cimzia to switch to this...and I feel awful. I wasn't doing great on Cimzia to begin with, but it's evident now how much it was holding me together. I am having abdominal pain throughout the day, extreme fatigue and tons of running to the bathroom.

People with Crohn's who have gotten relief from Vedo...how long should I wait before I write it off? My doctor says 12 weeks...
 
Memmy29 said:
I'm due for my second infusion Wednesday. I came off of Cimzia to switch to this...and I feel awful. I wasn't doing great on Cimzia to begin with, but it's evident now how much it was holding me together. I am having abdominal pain throughout the day, extreme fatigue and tons of running to the bathroom.

People with Crohn's who have gotten relief from Vedo...how long should I wait before I write it off? My doctor says 12 weeks...
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Stick it out. It won't be easy but it gets better. Second into third is rough but your energy will start to return. Get plenty of rest, drink LOTS of fluids, and eat as well as you can. Seems lasting abdominal pain, joint pain, is common but does relent. (Next week is number 4 infusion and I was scared I wouldn't hold the full 8weeks but I have so far. I wouldnt make it this far on other biologicals)
 
Kisleeh said:
Stick it out. It won't be easy but it gets better. Second into third is rough but your energy will start to return. Get plenty of rest, drink LOTS of fluids, and eat as well as you can. Seems lasting abdominal pain, joint pain, is common but does relent. (Next week is number 4 infusion and I was scared I wouldn't hold the full 8weeks but I have so far. I wouldnt make it this far on other biologicals)
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Thank for the pep talk. This is rough.
 
Hey all. Long time reader… first time poster.

So I consider myself a fairy fortunate Crohnsie. I was diagnosed about 17yrs ago and had very little to no symptoms the first 7-8 years. However, since then I have continual textbook issues including three 1-week hospital stays for obstructions.

Fast-forward to a year ago and I dodged my first surgery for a bowel obstruction at the terminal ileum. Doc wanted me to try Humira before going under the knife. After 9 months of deteriorating health, to the point I was unhealthy enough for surgery, doc issued a test on my Humira levels. End result: my body was creating antibodies and the Humira was doing nothing. Ugh. 40mg of Pred was prescribed for temporarily inflammation relief but a long-term solution needed to be found.

So this is when Entyvio came into the picture (about 5 weeks ago). I've had two doses and my third will be in about a week. Currently there are no side effects. BM's are normal (if not bordering on constipation), energy seems OK and no joint pain. However, I'm still on 40mg of Pred for inflammation because I'm a hair away from another obstruction- and I can tell it’s slowly getting worse. My hope at this point is to make it through Christmas without being hospitalized. I'm essentially on a liquid diet (Boost/Ensure) and it's barely making it through my system, so I don't know what else I can do to get any better.

So this brings me to my questions:
Do we know how effective Entyvio is on inflammation? This should be the first step to getting better, correct?

At the 6 week mark should I be feeling any difference? I see a lot of comments about 12-14wks but I'm highly concerned about making it that far without hospital care (my last stay was 1-yr ago today). I need this to work now so my kids have their Dad on Christmas.

Sorry for the long post… and Happy Thanksgiving.
 
WearTheFoxHat: From what I understand, you may not feel anything at six weeks. My doc (who's really educated on these things) has stressed again and again that Entyvio is slow acting and that the longer people have been on it the better they do. I really hope that you can make it through Christmas but from everything I've learned and heard, Entyvio is a slow road. Good luck!
 
WearTheFoxHat,

I wish you a healthy Christmas; it׳s not hard to understand your feelings about having some normality, being during the holidays with your family.

Sounds like you habe got some intense sticture there :(

1. Have your doctor been able to determine whether your stricture is inflammatory or fibrotic (scar tissue) , or maybe both ?
Scar tissue wont respond to meds. However, inflammation treated by medications can be accompanied with baloon dialation to widen the stricture. Did your doctor discuss with you such an option ?

2. Entyvio is still very new in the field, compare to Humira/Remicade. Was Remicade taken into account ? And what about immunosuppressant ?

3. The feadback from Entyvioo patients is still minimal. I believe that we will know much better in 1-2 years.


In a personal note, I really wish you to go through the holidays as healthy as a tiger. But remember, even if this wont get along, it's not the end of the world. The real important thing is you getting better. Once you are good, you will spend the time with your kids, cause it matters to you, Christmas or not.


Keep us posted snd good luck
 
New to the site. I recently received my second dose of Entyvio while being hospitalized due to Crohns being so bad. I was on Remicade for 13 years but started creating anti bodies against it. I am currently on 40 mg of prednisone, bentyl, caraphate, protonix, and norco at times. My doctor is also waiting on insurance approval of methotraxate to be taken with the Entyvio. As far as the Entivyio goes i do not see any changes yet. I am experiencing the joint pain and tingling in my arms, legs and feet. It is rather frustrating and painful but hoping it gets better. I have a follow up appt with my GI tomorrow after my 9 day hospitalization. Perhaps there is something i can also take to help with the joint pain and tingling besides norco. Don't want to be on a pain med all the time. I also take Ambien for sleep as i can't sleep well on high doses of prednisone. It isn't helping as i am on here at 2am. Best of luck to everyone.
 
Just had follow up with GI after wk 14, symptoms definitely improved, but stools still mushy/loose. Doctor suspsects methotrexate may be the culprit, but doesn't want to take me off it because it's treating my psoriasis and psoriatic arthritis very well. Tried immodium, but I just feel gross on it, bloating, cramping, just not right. He prescribed Colestipol (binds bile salts), thinks that might help slow things down and improve stool consistency. Anyone else taking this med?
 
Is anyone else on Entivyio experiencing joint pain and tingling in arms and legs? My body is extremely sore and tense. I feel like my legs are half asleep all day. It is a very draining and painful ordeal. Anyone have any advice?
 
aleshanicole, I have intense joint pain that seems to be caused by entyvio. It's so bad that I can't sleep at night unless I've taken Tylenol...and I wake up from pain in the middle of the night to take more Tylenol. I also have body pain that feels like electricity running through my muscles at all times although that got better about three weeks after the last infusion. I wouldn't describe it as a tingly feeling but it sounds like something similar. It's painful and I don't have any advice for you, I'm afraid. I've had such bad side effects from Entyvio that I'm planning on doing one more infusion just to make sure those negative side effects aren't a fluke (which I doubt, I had similar issues with the other three biologics) and then I'm going to go off of it. It does help my guts but my quality of life is no better. :-(
 
cornfieldgirl said:
I appreciate the feedback. It is Sunday and I am still so wiped out. The only thing I have noticed is that I have less joint pain; I think humira might have been the source of most of my pain. My bowels are a mess though- I wasn't expecting to be so sick. Hugs to you. I hope you have continued improvement.
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My husband has received 2 infusions of Entyvio and is scheduled for #3 this Thursday. I was just wondering how you are doing on this medication. Sure hope it has helped and the results you reported here have continued. This is a vicious disease. :ysmile::ysmile:
 
LandShark said:
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.
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I have seen your post sure hope you are continuing to get decent results. My husband is scheduled for #3 infusion this Thursday 12/18 and would love to know if you continue to receive good results.:ysmile:
 
Cacleoa7 said:
Hello. I haven't posted here before but have been reading this forum since starting Entyvio. I am 40 years old and have had crohn's for 24 years. I have 180 cm of bowel left and Entyvio is my last hope, as I have been on all the other drugs and had some bad reactions to the TNF's and am no longer able to take those. I have also tried many, many things and spent lots of money, trying alternative treatments.

I had my 3rd Entyvio infusion on this past Friday. I am on Prednisone, 30 mg and Imuran, 100 mg. Since Friday, I have had horrible back aches and really bad abdominal pain. Everytime I eat, my stomach seems to fill up so quickly and I feel very full and my stomach becomes distended. This is followed by gas pain and lots of bloating. :0(

We live in Illinois and I have a local GI here, though he is not much help and I would love to change Dr.s. However, I am also seen by a terrific Dr at Mayo Clinic in Minnesota, who is simply terrific so we travel up there for appointments, tests, etc. I have my Dr. here only because someone local has to order the infusion of the Entyvio.

Last week, I noticed some balance problems and have been having major mood swings and brain fog. I have noticed this since starting the Entyvio and it seems to be getting progressively worse. However, I am also on the prednisone so it is hard to tell what med is causing which symptoms. I went to a Dr. last week because of my balance issues and mood swings and he immediately decided (after only reading about Entyvio right before he walked into see me), that I could have PML. I was referred to the local E.R. and went the next day and had an MRI of my brain. Again, the Dr.'s there also knew nothing about the Entyvio....I even had to spell it and tell them about it. My MRI showed no PML, according to the ER Doctor but Mayo saw a copy of it and said that there are some other things that they would like to invstigate further, but assured me that they did not think it was PML either. My Dr. at Mayo told my husband and I when we were there for tests this past August that she feels that Entyvio is safer than Remicade, in her opinion and that there is not a "real" risk of PML. We trust her, completely, which is why I decided to take the drug.

But now, this pain is horrible.....I think that I would rather be going to the restroom 15 plus times a day again, like I was last week. The change has been very quick and now the isssue is that I am passing small amounts (pieces, if you will), of formed stool. I also have a slight fever.

During my visit in August, Mayo saw that I have more narrowing and they told me that surgery was probably in my near future but with the small amount of bowel that I have, that we should wait until it was completely necessary and the hope was that the Entyvio would help and I wouldn't need surgery.

It is strange to me, but my gas and bloating symptoms have gotten much worse since I started the Entyvio. It is almost like the Entyvio has caused more inflammation to occur......though I am not an expert. I just know that I feel progressively worse, after each dose. I am frustrated and feeling quite hopeless. I was wondering if there were others who may have experienced this and what your thoughts were. I am not sure what they next plan would be for me. I am nervous about having another surgery, even though I have a terrific surgeon at Mayo and he would be doing strictureoplasties (spelling I know is wrong).

Thanks for listening.

Amy
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Amy I was sorry to hear the side effects you reported. I certainly hope things are better now. Bloating and gas are issues my husband has with this disease. He is getting his 3rd infusion this week and I certainly hope it is not going to get worse. Please report your current situation. Your help will be appreciated.
 
duh panda said:
I didn't start Entyvio that long ago (go in for 3rd infusion on the 28th) but was feeling noticeably better within a week of the 1st, and since the 2nd I've only noticed it get better and better. I started weight training and incorporating yoga back into my days just before my 2nd infusion; which combined with a diet plan I'm hitting my 2lb/ week gaining goals and am up 10lbs. from my lowest weight just before starting Entyvio - which just happens to be the highest weight I've been able to hit/ maintain in a year and a half.

I've noticed I'm feeling HUNGRY which wasn't happening before even with 40mg of pred. and have also been able to begin tapering the pred. (will drop to 20mg on 28th - lowest dose I've tolerated without backsliding since May).
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Dear Panda, just read your report and wondered if things have continued to improve. Your reply would be greatly appreciated.
 
My son seemed to be not doing great. So doc's had us do Vedo yesterday at 4 week Mark instead of waiting the 8 weeks. Labs are done prior to starting infusion... CRP is 1.7 down from 3.0 and SED is 31 down from 45. Hmmmm
 
I'm having my third infusion next week. Wish I could say I'm improving but I've never been sicker. This is the worst joint pain I've ever dealt with. I'm taking aleve but it's killing my stomach. Otherwise I can't even walk on my ankle. I'm having bad abdominal pain several times a day to the point that I'm afraid to eat. I'm also getting acupuncture. Maybe it's time to switch to a crazy diet- AIP orPaleo I've heard helps inflammation.

Hope to report good news in the coming weeks...
 
We have had four doses now but the headaches and joint/back pain will not go away. Our insurance company has not processed any of the claims so I do not know how much we will be hit with and today I get a call from Entyvio Connect that says they will not pay anything as she is a minor and the use is off label. I am afraid that the insurance company will not pay now.

How much is your insurance company paying? How much will I be able to negotiate down from the $11800 billed to my insurance.
 
Wildanimalpark said:
We have had four doses now but the headaches and joint/back pain will not go away. Our insurance company has not processed any of the claims so I do not know how much we will be hit with and today I get a call from Entyvio Connect that says they will not pay anything as she is a minor and the use is off label. I am afraid that the insurance company will not pay now.

How much is your insurance company paying? How much will I be able to negotiate down from the $11800 billed to my insurance.
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I'm sorry to hear that. My first claim just hit. $55k billed, $22k allowed. I have a $2500 out of pocket max, so my responsibility says $1200. I think Entyvio connect may help but I'm not sure how much yet. Also, I think the claim was for my first two infusions.
 
Entyvio Connect will not help as she is a minor. They say it is approved by the FDA for 18 over and therefore they cannot reimburse us anything until she is 18.

Really! You do not mind billing me for it at Adult prices but you cannot help with the co-pay?????
 
john/char said:
Dear Panda, just read your report and wondered if things have continued to improve. Your reply would be greatly appreciated.
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Hi there! Things have continued to slowly improve. Had a colonoscopy Nov. 18th that showed improvement in the colon, although small bowel remains too strictured to get a camera in there to see what's going on. Ultimately the consensus was that I needed more time on Entyvio to really see if it'll be useful for long term treatment/ management of the disease and needed a game plan to target the small bowel. I think there's a post on this thread somewhere updating about that...

In the mean time - added Methotrexate into the mix a month ago for the small bowel and I finally feel like that's building up and doing something. Pain is down to cramping/ minor muscle spasms for a couple hours after eating as everything passes through the small bowel but it doesn't take me to my knees like it was. Also been able to taper further off of Prednisone (started 10mg this week).

Been seeing less and less blood, able to tolerate veggies (cooked really really good), and a chronic fissure is finally starting to heal (at least it's no longer a daily pain in my a**).

Exhaustion/ fatigue is still an issue. Some days better then others. Although even at my highest point in nearly a decade I was still napping regularly, missing classes regularly, etc. (oh how I miss the flexibility of college!) I don't really expect any of that to improve. By this point I figure that's from long term malnutrition along with everything else and a constant for my "normal."

I have my next (4th) infusion next Tuesday. Not experiencing the burning in the upper GI that I was experiencing prior to the 2nd/ 3rd infusions, which i was really worried about going for this first 8 weeks. So overall I seem to be keeping on the up and up and will be well enough to leave my mom's care and return home to care for myself in the next month! :)
 
Dear Panda,
Thank you for the prompt response. It sounds like there has been some positive improvement for you. We hope it continues. We are trying to remain positive and focus on the good. We will share our experience after Thursday and will think of you.
 
Wildanimalpark said:
We have had four doses now but the headaches and joint/back pain will not go away. Our insurance company has not processed any of the claims so I do not know how much we will be hit with and today I get a call from Entyvio Connect that says they will not pay anything as she is a minor and the use is off label. I am afraid that the insurance company will not pay now.

How much is your insurance company paying? How much will I be able to negotiate down from the $11800 billed to my insurance.
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My daughters sees a Pediatric GI (for other issues) and asking her Dr what he thinks of Entyvio, his office won't give children Entyvio since the FDA didn't approve it for them. This Dr commented he has one patient that the parents wanted him to give Entyvio to their child. He explained it is too much of risk to his practice should an adverse reaction occur and he would liable for damages should parents sue. This Dr said that they would have to find another Dr. to administer the drug. He also said that it will be in the next year that the FDA includes children for Entyvio. (I realize this doesn't help on what I have commented on but I do hope you Dr has been up front with you. There's nothing worse than finding out after the fact. I hope things work out financially) I will say my insurance has billed this as a higher level drug class since the FDA hasn't released a drug code classification. I imagine after time this cost will decrease. Take care.
 
Humira and Cimzia is an adult med too and has to be only option (failed Remicade). Last I checked it's not FDA approved for kids yet either. Yet Humira and Cimzia are regularly given to kids now. There isn't trials for kids on drugs... So this happens. Stelara is another that is being given to kids now... But considered "off label" due to FDA
 
A question for those who have had relief from Entyvio:

When did you start to get relief? I've heard different things about when to evaluate - 10 weeks, 12 weeks, 14 weeks...the 4th infusion. Just trying to wait it out, but I've never felt crappier. Going for my third infusion on Tuesday...so I'm almost at the 6 week mark right now.
 
Is anyone having chest pain or heaviness with this med? I get these odd sharp pains in my chest between my breasts and it radiates into my back. My chest also always feels heavy. But my medical doctor said my lungs sound clear. Its very odd.
 
Memmy29 said:
A question for those who have had relief from Entyvio:

When did you start to get relief? I've heard different things about when to evaluate - 10 weeks, 12 weeks, 14 weeks...the 4th infusion. Just trying to wait it out, but I've never felt crappier. Going for my third infusion on Tuesday...so I'm almost at the 6 week mark right now.
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I get my third infusion on the 29th. I agree with you i feel awful and the side affects are killing me. Hoping for some change with the third.
 
Memmy29 said:
I'm having my third infusion next week. Wish I could say I'm improving but I've never been sicker. This is the worst joint pain I've ever dealt with. I'm taking aleve but it's killing my stomach. Otherwise I can't even walk on my ankle. I'm having bad abdominal pain several times a day to the point that I'm afraid to eat. I'm also getting acupuncture. Maybe it's time to switch to a crazy diet- AIP orPaleo I've heard helps inflammation.

Hope to report good news in the coming weeks...
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I agree with you worst joint pain ever. I also have bad headaches everyday and lower back pain. Its miserable. Hoping the third treatment will be like magic and side affects go away lol. i am taking norco for the pain and even then it is still there. Gonna discuss a muscle relaxer with my doctor versus pain med see if it may help. I don't want to be on pain meds forever. Hope things get better for you. I have found heating pad helps a little as well.
 
I recently started entyvio, had my 3rd infusion and will be getting my 4th in January. Just thought I would share since it my actually be working. I've been on prednisone for about two years unable to get off, and currently I've been off for almost a week! And I've still been drinking coffee which I used to be so afraid of.

However, I have never been on any of the other drugs because I also have MS, and there is a small chance that is working in my favor for entyvio, (not the MS, not having taken the other drugs, ie. remicade etc.) but really I was out of options. Have been on Imuran for almost 6 months, it didn't seem to help but doc is keeping me on it so I hopefully won't develop antibodies to entyvio. So like someone else mentioned maybe it's the combo, either way I'm getting hopeful for the first time in years.
 
aleshanicole: i am having similar side effects...for 3 weeks after my last infusion my lungs burned like i had a bad chest cold although i didn't have an infection. i have all over body pain and joint pain and deep, deep fatigue. my doc is not convinced that the entyvio is causing these issues so i'm getting one more infusion tomorrow. the further away i get from my last infusion (it's been 8 weeks now) the better i feel...which either means that the entyvio is kicking in and working OR that i'm being relieved of the side effects as the drug leaves my body. i'll keep you guys posted. if i feel awful after this next infusion i won't stay on entyvio...
 
New to this thread, but I had my 4th Entivyo infusion about a month ago. This is my end of the road drug as I'm sure it is for most people currently taking it. I just had some scopes done today and the doc and I were both surprised to see no improvements from last year.

Still active disease and ulcerations. My labs have been better and CRP overall is within normal range, but it appears the Crohn's monster is still alive and well in my colon. I have a feeling the blood levels are good because of the dietary changes I've made (been full paleo for over 6 months). I know the drug works slowly, but I'm really bummed that there was no improvement at all!

The doctor says we'll keep up the infusions for the time being, but then need to talk surgery (permanent ileo) if it doesn't get better.

Anyone else in the same boat? I'm really scared of surgery being a serious consideration.
 
Okhoney - I'm totally in the same boat. But, I'm getting a colostomy next month to help the healing process. Doc is hoping that 6-9 months of bowel rest will give the body a chance to recover, and let the drugs work.

To be honest, I'm looking forward to it. I just got back to the house from grocery shopping where I had to run to the bathroom 3 times. Just getting rid of that urgency will be a huge lifestyle upgrade.
 
okhoney said:
New to this thread, but I had my 4th Entivyo infusion about a month ago. This is my end of the road drug as I'm sure it is for most people currently taking it. I just had some scopes done today and the doc and I were both surprised to see no improvements from last year..
Click to expand...

Our GI at Mayo said that this drug is slow... but from what they are seeing.. It's "winning the race". Are you sure you gave it the time needed? Our GI wants to see what things look like after 5 months on it. (But we are in a race to save my son's rectum and he's only 14.. so maybe they are not wanting to give up for those reasons. To make sure every possible chance was taken)
 
Had the 4th infusion yesterday and feeling pretty good today. Woke up with a bit of a headache but I've been able to anticipate that since after the first infusion and catch it early. Joint and bone pain is down today - not sure if it's from Methotrexate or the Entyvio at this point. Seems to crop up in the couple days following MTX injections then drops back to barely noticeable and tolerable levels.

Gut's been feeling good - less and less pain in upper GI as MTX builds up in the system; lower GI, including a fissure, all seem to be healing up slowly but surely. No burning/ fiery pain in the week or so prior to the infusion like there was with the last two and going the 8 weeks between treatment felt pretty darn easy. Hoping to keep seeing improvement and in the future be able to better predict any negatives that do crop up, like the headache, joint pain, etc. so it can be managed.
 
I am in the same boat. 4 th infusion coming up 12/26.
Had a really good result after the 3rd but after one week it totally stopped working D returned with a vengeance. Doc said surgery next I told her no way lots of other options.
No surgery for me unless it is life threatening. Too much risk CROHNS recurs elsewhere like in the small bowel. That would be a bigger nightmare
We added MTX so far nothing bad.
The Crohn's is under control with steroids. Most of the disease is PA with fistula and seton.
I told her Remicade is up next. Worked for 9 years then tried Humira which did nothing but enrich abbievie for 6 mos.
My immune system figured out these biologics. Maybe after a year REMI will work with a higher dose which my last GI never tried. She agreed!
If that fails I will try LDN with gaps diet and or elemental diet with or without her.
I do like my GI a lot but they are locked into whatever their current protocol dictates.
I will not be a victim to that which is ever changing
My goal is to hold on to what I got for 3 years in the hope new treatments will be available-
Like stem cells, SSI and others.
 
I have been off entyvio for 5 weeks now and finally my side affects uave lessened ut not vone, sugery scheduled for January 15th, I am so excited cant wait to get my life back and be me again not this shell of a person that crohn disease has left. I am having a semi colectomy with a partial small bowel removal, with a stricture plasty, I sounds like my new answer since entyvio was not still waiting on my come ba k but I feel it coming.
 
I have started Entyvio on t he 28th of November.
i just finished my third infusion.
They tell me that it's too soon to notice any changes.
But so far I haven't had any reactions.'
Like most people here I have had reactions to everything else.
 
Has anyone here that is on Entyvio and not seeing much relief considered talking to their doctor about Stelara? My daughter was on all the other biologics (except Entyvio), and has been on Stelara now going on two years and has been in remission. Just a thought for those needing another option to consider!
 
The joint pain is unbearable. The RN told me it should dissipate within 72 hours of the infusion but it is all the time now. I'm not sure what to do. She said no aleve. Anyone else taking something for joint pain? Just had my third infusion and the Crohn's has improved, but this joint pain is so bad I'm on crutches.
 
My GI wants me on the Entyvio. My flares seem to last 2 months at a time, is that a reason to change Meds?? I'm thinking just take the flares as they come,,and enjoy the good days.

Previous and current Meds: Pentasa, prednisone , humira , cimzia, Remicade (currently)
Imuram , (currently), ultram, Endicort ,

Good luck fellow Cronies,,,
 
Hi all.
My joint pain during a flare is very painful, along with the other symptoms. Joint
Pain, my Dr is suggesting Xeljanz ,,I am checking with my insurance company to see if it's cover,,but think about Xeljanz , See what your Dr thinks,,

Take care, fellow Cronies.
TWB
 

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