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Entyvio (Vedolizumab) Support Group

Jane- Yeah I take Biotin, the highest amount I can get and I forget what it is.

I attempted to attach things- I hope it worked.

You can see what it started out as, and yeah that's all natural color too.

Then it turned dull, brittle, and fell out.

That pillow shot was after a nap and that is one pass through my hair.

The result: bald.

It's growing back fine but it's SHORT SHORT now. My hubby has longer hair, haha.
 

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The part that bothered me about the "it's the nutrients" response and the adamant refusal to possibly admit this might have been an outlier response to the medication was you can see my nails in that photo- THEY never turned yellow, became brittle, stopped growing, none of that and hair and nails are much the same when it comes to nutrient response...so why would my hair fall out but my nails stay strong and beautiful? Hmm....seems fishy to me.
 
I used to live in Chicago too...now I am in Florida. I'm supposed to start entivio hmm I wonder if that will happen I have heard of a few others.. did you call the co and report it they need to know. Your art is beautiful do you sell?
 
Juulez-

Yes, I reported it and they sent me to a dermatologist. The gist of everything they said and did points to them not wanting to attribute my hair loss to Entyvio. Apparently in all their gathering of high "edu-ma-cation" they have forgotten the oddities we call "outliers" in studies...so whether or not they took it into account and wrote it down I couldn't say. I sure hope they did though, because I have never had such a problem until about a month after I started on vedolizumab.

Thank you so much, if you'd like to see my usual work there are two options (I still haven't put together a website...bah.)

Update: Apparently I'm not allowed to post a link to my site directly, hahaha. I sent you a PM since I don't believe in being rude and not answering a question. So stupid, it's not like I was soliciting hahahaha. *shrug*
 
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Congrats on starting the med, Ron. I hope it works for you!

Juulez- yeah, it's worth it. Plus I learned something I'd have never known: short hair actually looks decent on me, haha.
 
I've been on entyvio for 17 months with previously excellent results - complete remission of symptoms with no side effects. However, on may 2 I had a regularly scheduled (every 8 weeks) infusion and 4 days later had a complete flare up of UC symptoms - pain, urgency, frequency. No blood (never had this issue). Doctor ran blood and fecal samples. Everything normal , even inflammation markers like C reactive protein. How can this be? Now trying to schedule colonoscopy to see what is going on. Big disappointment. There were no symptoms before this latest treatment.
 
I've been on entyvio for 17 months with previously excellent results - complete remission of symptoms with no side effects. However, on may 2 I had a regularly scheduled (every 8 weeks) infusion and 4 days later had a complete flare up of UC symptoms - pain, urgency, frequency. No blood (never had this issue). Doctor ran blood and fecal samples. Everything normal , even inflammation markers like C reactive protein. How can this be? Now trying to schedule colonoscopy to see what is going on. Big disappointment. There were no symptoms before this latest treatment.
I hope you get better soon.
 
I've been on entyvio for 17 months with previously excellent results - complete remission of symptoms with no side effects. However, on may 2 I had a regularly scheduled (every 8 weeks) infusion and 4 days later had a complete flare up of UC symptoms - pain, urgency, frequency. No blood (never had this issue). Doctor ran blood and fecal samples. Everything normal , even inflammation markers like C reactive protein. How can this be? Now trying to schedule colonoscopy to see what is going on. Big disappointment. There were no symptoms before this latest treatment.
Are you under any other stressors besides this of course? Every time there is added stress.....ie: they are selling our rental house out from under us......it acts up. Even good stress.....ie: my daughter is getting married in September.....yep acting up after first heard. The whole trying to stay midline on emotions is my best bet.....I always say trying to stay Vulcan because yes I'm a Trekkie lol.
 
New phones are stressful. You have to transfer all your stuff over. Then there is all the new screens and chargers and stuff. Ya I'll hold onto my Iphone 6 for quite awhile.
 
This is a reply to those who posted about hair damage and loss as a result of entyvio. I had this experience also - hair failing out, although not as far as balding. I tried hair,skin,nail supplements without effect. The beauty supply store in my neighborhood recommended a shampoo from DS Labs called Revita. This is what worked ! It does tend to dry my hair (or perhaps that's the entyvio) but hair loss stopped after 2 or 3 months. I use good quality conditioner and that helps also - although hair is a bit dry and lost sheen. I'm happy with the result I got. I have been on entyvio for 17 months with excellent results (once I took care of hair issue). Some new bad news after my last infusion on may 2. 4 days later I had return of symptoms - frequency, urgency, pain, some mucus, no blood. This lasts from about 5:30 am until 12 then quiets until the next morning. Blood and stool work was all negative, so doctor is repeating colonoscopy and endoscopy in 2 weeks. Entyvio hot line says they have some incidence of loss of efficacy and /or body reacts adversely to product. They're also doing new test for entyvio levels in the blood. Right now I try to live through the morning until I get respite from symptoms
 
I had my first infusion last Friday. I have felt pretty good up until today and then i have felt like I almost constantly need to go to the bathroom. Is that normal? I don't get my next infusion till next Thursday.
 
Ron, I did not experience that with my loading doses. Now that I am at an infusion every 8 weeks I am experiencing normal BM's. Entyvio has been doing well for me.
 
This is a reply to Evgin-

Thank you for replying.

Yeah my hair loss seems to be extreme. I don't mind that part of it, if it's a side effect, it's a side effect, it's the fact that they're so very reluctant to attribute it to the meds. As if it could have been anything else since that was the only thing that changed and my nails weren't affected haha. *shrug* Perhaps they don't want to scare people into not taking it? I don't know, I mean, if I'd have known it was a possibility I just wouldn't have been as scared/surprised by it, ha. That's just me though.

I'm sorry you had a flare up/ recurrence. I hope you go back into full remission soon! <3
 
Hi..I have now been on entyvio since February and had a scope done yesterday. I still have active disease but it's went from multiple large ulcers, severe granularity and mucus to small ulcers small amount of mucus and granularity. I'm thinking that maybe a few more infusions will clear it up entirely. I just wish that meant a few weeks rather than months. Never the less, this is the first drug that has shown to be working. It's just a matter of having patience. I have the choice of having an op to remove it then start with a clean slate while taking entyvio as maintenance or just simply wait. This for me is a very hard decision. I know I can only make the decision myself but would appreciate some advice?
 
Yeah I'm in 2 minds. It's been a long flare, since last September. My only thought about having the op is it would be over sooner then I know I have a drug that works but then there's all the stuff that goes along with having an op. Thanks for your reply
 
Hello Gemmcm,
Sounds like it's starting to work. Give it more time. What you describe is how it went for me. Slow improvement, went to every 6 weeks, and now complete remission. Surgery is the last resort. Just my opinion, but I'll bet your Doc would concur.
 
Yeah I'm in 2 minds. It's been a long flare, since last September. My only thought about having the op is it would be over sooner then I know I have a drug that works but then there's all the stuff that goes along with having an op. Thanks for your reply
Welcome.
 
Hello Gemmcn

I agree with the others. Since Entyvio has beaten is back this far, I would give Entyvio the chance to finish the ulcers off. Surgery should be a last resort.
 
Um...hi. I am 31, female. I went undiagnosed my entire life because I was an atypical presenter. They finally figured out the problem in November

I was never put on any other med- I haven't failed a TNF-alpha...but I went straight from 9 mg daily of budesonide to a bag of vedolizumab every two months solely. It seems to be working, but I've had some interesting reactions.

Every infusion day I'm exhausted, for one.

I lost ALL of my hair, for two.

My skin has decided now is a perfect time to freak-the-f***-out, for three.

I seem to be asymptomatic otherwise..which makes me think it's working...or...I don't need it in the first place? I don't know. My doc is a fantastic one though, she's one of the leading drs in the field- studied directly under Dr. Hanauer...so...I mean...I have to trust her, right? :)

Anyway- I'm glad there's a support group for this medication specifically.

Anyone else had any of the same side-effects I have, by chance?
Asra - Sorry to hear about your situation but don't lose hope. See my posts from 4/2 and 4/3/17. I don't trust any of the doctors. They don't really understand what is going on. All they know is how to prescribe the "standard protocol" that the insurance companies allow them to prescribe. So, time to take your health into your own hands. It's a long slog and there is no one way to treat your disease but there are many supplements and foods that will combat inflammation. You have to start reading and absorbing the knowledge and really tune into how your body reacts to everything you put in it.

I just had my second round of Entyvio a couple of weeks ago. Can't tell if it's doing anything but they tell me it takes 6 mo to kick in. I hope you get some relief soon.
 
Hi .. I have had 4 infusions and still don't feel better but as I said, above, the scope showed alot of improvement. My Dr says 14 weeks for a difference in symptoms and 6 months to a year for full remission. Everyone will be different of course and it my depend on where your crohns is and how severe
 
I've been on entyvio for 17 months with previously excellent results - complete remission of symptoms with no side effects. However, on may 2 I had a regularly scheduled (every 8 weeks) infusion and 4 days later had a complete flare up of UC symptoms - pain, urgency, frequency. No blood (never had this issue). Doctor ran blood and fecal samples. Everything normal , even inflammation markers like C reactive protein. How can this be? Now trying to schedule colonoscopy to see what is going on. Big disappointment. There were no symptoms before this latest treatment.
My symptoms are the worse the day of and for up to two weeks after the infusion. I've yet to have labs to check inflammation. I just wanted to say how much I appreciate your post. I trust my GI but he looks at me like I've lost my mind when I mention this. It isn't just me though--at least ONE other person has had this experience.
 
Ron,
That's awesome. I felt better by my second dose if I remember right....little fuzzy tonight. So happy for you getting on it finally.
 
Ron, It took a while but have got better for me. I am now having regular BM's and not having pain. It took getting past the loading doses and getting into the regular (every 8 week doses) so give it some time. I like my results so far.
 
Well I am home. Feel like yuk. And guess what I saw my doc and still need surgery. 5 strictures and 3fistulas. Unreal! Tell me abt after infusion how will I be? Thanks all
 
Sorry to hear about needing surgery. I had my last infusion yesterday. Usually for a day or so after I am just fatigued. But it goes away after a day or so. Not too bad.
 
Today will be two weeks since my loading dose. I was supposed to have another infusion yesterday but the specialty pharmacy didn't send it out. The nurse ordered it overnight but it hasn't come yet.
 
It came. My vein wasn't the best and it took a while.
On my last infusion they had to call in a specialist nurse from the ER as the two in the treatment room could not get a needle into my vein, and gave up after two attempts. My arm is bruised black ind blue, and I look like a junkie, lol

Well, well, my veins are are cowards and roll away from needles....:dusty:
 
Ya they always search for my veins I swear I'm going to buy that vein finder. Juulez they waited until half way between infusions for my surgery now 6 weeks out. They said it's better to do that something to ask. Great Ron that you got the infusion sorry to hear your veins are awol too.
 
I am in so much pain!! The big d then that stopped and now throwing up everything! Help! Is it from the med or do I need er? Crying it hurts so bad
 
Julie,

If you think you need to go to the ER, then go. Doc offices can take hours to respond by phone. With the pain you described and the other symptoms, I would go to the ER. Praying for you.
 
Help!!!!!! I am home from infusion ulcers in my mouth and throat pain!! Can't talk eat drink swallow saliva. What do yaall do😢🤔julie
 
I took benydryl and swished with benydryl nixed with milk of mag dr said till I can get ahold of my doc. Oh my it numbed my mouth and it was somewhat tolerable and I slept half the night. Thank you so so much for all of your ideas and most of all knowing people care💜By the way talked to E nurse and it's not from infusion it is part of bad crohns flAre. ❤Hugs everyone!!
 
I took benydryl and swished with benydryl nixed with milk of mag dr said till I can get ahold of my doc. Oh my it numbed my mouth and it was somewhat tolerable and I slept half the night. Thank you so so much for all of your ideas and most of all knowing people care💜By the way talked to E nurse and it's not from infusion it is part of bad crohns flAre. ❤Hugs everyone!!
Hope yiu feel better.
 
I have had two infusions. I got a call this morning from my gi. I have to have an appointment before I can have another infusion. Is that normal?
 
I don't know if that's normal but I do know I have an appt with doc same day as my third infusion. And I need bloodwork before then💜J
 

my little penguin

Moderator
Staff member
Why would you need to put off your infusionby a week ?
You said you would be sent to see a specialist?
Aren't you already seeing a gastroenterologist (GI )?
They are a specialist.
Who would they send you to ?
A second opinion. ?
 

my little penguin

Moderator
Staff member
Your insurance typically has folks to call - nurses that are health coaches
They can help with transportation to the hospital
Also call social services at the hospital they can help
 
I have already had two infusions but today got word that I had been pre-authorized?
That is what happened to me. Stupid insurance company gave permission over the phone, saying pre-authorization was not needed, then I had 2 infusions before the insurance company came back and said I needed a pre-authorization. Luckily the insurance company records their phone calls. When the call between them and my GI's office was replayed there it was, plain as day. Insurance company had to bite the bullet and pay for those 2 infusions. It would have been $30,000.00 out of our pocket if they had refused to cover it. More than likely, we would be filing bankruptcy.
 
I started Entyvio one month ago (had two shots so far)... I've still some symptoms and I just checked my calprotectin that was still quite high (400)... I stay positive and hope it will work for me.
Have you checked your calprotectin levels and did it went down after few entyvio shots?
 
I started Entyvio one month ago (had two shots so far)... I've still some symptoms and I just checked my calprotectin that was still quite high (400)... I stay positive and hope it will work for me.
Have you checked your calprotectin levels and did it went down after few entyvio shots?
Haven't had it checked lately.
 
I skipped an infusion because I felt transportation was expensive. Big mistake. I feel like I have gone backeards. Going for an infusion tomorrow
 
Just had my 5th infusion I think.....only issue is it took 4 people 12 tries to find my vein....yep one big bruise!! They kept saying maybe you should get a pic line. I told them I only have this med every 8 weeks no way do your job. Ok last part was in my head the do your job thing....but I screamed it loud in there lol.
 
Just had my 5th infusion I think.....only issue is it took 4 people 12 tries to find my vein....yep one big bruise!! They kept saying maybe you should get a pic line. I told them I only have this med every 8 weeks no way do your job. Ok last part was in my head the do your job thing....but I screamed it loud in there lol.
My veins are difficult too.

How entyvio been working for you?
 
How long does it take for Entyvio to work? I had my third infusion Friday. I went eight times from the time i got up yesterday until early this morning. I am supposed to let my doctor know how i am doing in two weeks. If not better, they will probably send me to a specialist.
 
How long does it take for Entyvio to work? I had my third infusion Friday. I went eight times from the time i got up yesterday until early this morning. I am supposed to let my doctor know how i am doing in two weeks. If not better, they will probably send me to a specialist.
Sorry to hear this Ron.
I been very curious about this question as I'm still a bit bad before my third injection.
My doctor said it could start to work after the 4th injection... and i read somewhere on the web it could take almost 4 months to really kick in. It's slower compare to anti-tnf.

I found out on a pdf they published, if you don't have a response after week 6 (third infusion), you could benefit from an additional dose after one month (without waiting for 2 months as the classic maintenance program)
http://www.entyvio.co.uk/documents/Entyvio PDF Version Welcome Booklet.pdf

It also say:
"If you have colitis and have shown no response at all after 10 weeks, your
EEntyvio treatment will be discontinued
If you have Crohn’s and have shown no response at all after 14 weeks, your
EEntyvio treatment will be discontinued
However, don’t worry
if you don’t experience improvements straight away,
your body may need a little more time to respond."
"

SSo aparently 14 weeks is a good assessment for Crohn's disease.


I would not worry too much if i was you Ron for symptoms just the day after the infusion, but yes you could tell your doctors so in case he can plan to put your next dose in 1 month and not 2.
 
"It is important to note that each patient will respond differently to Entyvio, so response times to treatment will vary. Many patients will feel better within 6
weeks; however, you may need to wait up to 10 weeks, or even 14 weeks if you
have Crohn’s before you start to feel better with Entyvio. This is because of the
way this medicine works (please see page 12 of this booklet).

If you have Crohn’s and you don’t feel better with Entyvio treatment after
your third starter dose given at Week 6, your doctor may feel it is valuable for
you to be given an additional starter dose 10 weeks after your first infusion

If you have either Crohn’s or colitis and start losing response to Entyvio
during your 8 weekly maintenance treatment, you may benefit from
receiving Entyvio every 4 weeks"
 
very interesting booklets, read this
http://www.entyvio.co.uk/documents/Entyvio PDF Version Welcome Booklet.pdf


White blood cells
are made by the immune system
to fight against disease, but in Crohn’s and colitis an
overproduction of these cells in the gut contributes to
inflammation. Entyvio works by keeping white blood
cells out of the gut, helping to reduce this inflammation.
Entyvio blocks only the white blood cells that cross over
into your gut. This is different to anti-TNFs that reduce
inflammation throughout the body.
It’s important to understand that Entyvio only blocks
new white blood cells from crossing over into the gut. It
cannot work on older white blood cells that have already
passed into the gut. Eventually these older white blood
cells will be cleared from your gut through a natural
process and the inflammation they caused will ease too.
This may be a reason why some people need to wait for
a few weeks before they start to feel better on Entyvio.
 
Thanks. I don't know if it makes a difference but I held off on the third dose because of financial concerns because of having to take a cab.
 
I hope everyone is doing well. I will be starting Entyvio on 7/21. I had a resection in January and already have small ulcers in my ileum. Praying this works!
 
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