Vedalizumab (Entyvio)

[G'day]

Good day all!

I'm a 14 year victim of this funky life event, and I pray for all of us. No joy with Imuran, Remicade, Humira or Cimzia. Just started Entyvio today, and thought I'd share.

...didn't know that the infusion has a shelf life of only four hours...andddddd if you miss your appointment, or are late, they need to charge for the drug, 'cuz it goes bad quick. I was on time (thank God!...or Karma or the deity of your choice...). 1/2 hour to infuse, 1/2 hour to be watched. Hot flash during the infusion, and about 12 hours later, feeling ...different from anything I've ever felt. Thought I'd share...

Feels like sand in my eyes...only the sand is behind my eyeballs. Tired, but wide awake...like I haven't slept in a while, but I'm awake on coffee. Stomach gurgling/storming, but nothing coming of all the bubbling.

I'm really hoping that this one works...'cuz the TNF blockers didn't do anything for me, and I'm about out of options. ...and, if you're reading this, you're also on this side of the dirt with me. Not dead yet...like I tell all the staff at each procedure...keep me alive until the bank accounts are empty, and the credit cards are full...

Good luck to all, and may good karma winds blow in your direction.

 

[marshayates]

I was diagnosed in April 2014. Bowel resection in 9/2014. Failing every medicine. On Entyvio since 9/2014. Cant tell much difference..especially after 3 or 4 weeks post infusion. My side effects during and after infusion are headache, dizziness, bad taste in mouth and i feel more forgetful and like my thought process just isn't as good as it was. The Entyvio only works about 3 to 4 weeks for me. Am i expecting too much to soon?

 

[G'day]

Hi! In my experience, you'll know what the medicine will do for you after about 12 weeks. Very, very pleased that you're getting the break for a month (out of two? ...you'll be on infusion once every eight weeks now?) And, as the drug takes hold, should be that every symptom just quietly calms down. I'm hoping for Vedo to live up to its' promise for me. 14 years now...still here, and still keeping my sense of humor. Sorry you've joined the victims group for this funky life event, but happy you're still communicating.

How old are you? ...i.e. enough life experience to know that we all get hit with different kinds of challenges?

 

[marshayates]

Hi G'day, I am 40. I am now on every 8 weeks with the Entyvio. Apparently, I have had crohns and symptoms of it for a very long time (5-10 years maybe) just thought i had a little stomach trouble. I am a nurse but feel stupid regarding autoimmune diseases.

 

[G'day]

Hi Marshayates. I'm 51, just starting Entyvio after having had Remicade and Cimzia fail, and Humira start well and then just peter out. Fourteen years with this, three surgeries and one active fistula. When I was diagnosed, I didn't believe it for many, many years.

This doesn't have to affect your life much. Give the disease the attention it needs, but only when it needs it. Love your life every other minute. Many, many people leave the docs office with much worse news than we have received. I know that it sucks to win the Crohn's lottery, but the bright side is that many folks are actively working on this, and there are success stories all the time. You WILL find the fix that works.

For me, my case was diagnosed in 2001, and I was told that I need a surgery within 3 years, and that the surgery had a less than 5% survival rate. I held off the surgery until 2009...and in the years in between, a surgery was invented that had a 70% survivability. Still here, and planning to stay...and life is mostly still a fun event.

If you're 40, you know that you don't get to that age without some bumps & issues along the way. Keep your chin up, and know that all of us are praying for good karma to blow in your direction. You will come to terms with this, and if you keep plugging, you will win.

Hugs!!!!!!!!

 

[marshayates]

Hi G'day, Im sorry to hear that you have failed so many medications. Im hopeful that u will have some positive effects from the entyvio.
My story seems like it should have covered more than just a few months. If the bad abdominal pain had not persisted last April i would have not have gone to the hospital. Upon diagnosis, i was told i had thickened distal ileum wall. A couple weeks later, i had a upper gi with small bowel follow through and diagnostic blood work...and thats when i had answers. Continued with abdominal pain and failed so many medicines. The ladt were humira, imuran and pred...before my gi decided to order a f/u ct and found a mass of abscesses

 

[marshayates]

Thank you for ur words of wisdom and support!! I desperately need those at the moment.

Hugs back at ya!!

 

[G'day]

You do have to give your condition the attention it needs...don't ever assume that it's in remission...keep getting checked. You caught it quick, and while it will be a bit inconvenient, it's most likely that that's all it will be. More treatments are coming all the time, and I enjoy visiting here and seeing the success stories. After 14 years, I still do everything I used to do...although, the abdominal surgery lost me my European swimsuit modeling career. (Joke...I'm a balding, overweight old guy...they weren't calling that much anyway...and sorry for the visual...)

...but I do have my wife, my life and my two kids. It's all great! Sorry you got hit with the shock...but know that it's not a death sentence...and your life will return to mostly normal soon. Plus, by catching it early, you'll likely avoid much of the damage of not catching it. Early catch = more likely remission.

Good luck, and good karma. Do good things, and good things will come to you. Anything I can do to help?

 

[marshayates]

Hi G'day, being a nurse and not being able to see the damage inside of me is frustrating. Idk about catching it quick though. Ive had stomach (intestinal ) issues since i was a teen. I remember being out with friends and whike they were buying candy or sodas, i was buying tums or pepto bismol..lol. My GI thinks i have had crohns for several years. I always just thought i had a nervous stomach and so i treated symptoms. Is ur Crohns small or large intestine mainly? When u have diarrhea 5 to 20 a day, as i do since surgery, how can i tell if truly flaring without having CRP or sed rate checked all the time? I have abdominal pain pretty consistently also. What diet do u follow? Has any diet ever really helped? Apparently, my intestines have some damage, even after the sugery bc i have a lot of undigested food coming back out in bm's. Im just frustrated. Thanks again for the help! You are awesome.

 

[G'day]

Very sorry about your pain! Tylenol is your friend...Ibuprofen will cause you pain, as will the Alieve family of painkillers...last time I took an Alieve, it felt like I'd eaten ground glass. My Crohn's is both small and large intestine. 95% blockage down from the duodenum connection to the small intestine was what resulted in my surgery. When they got in there, they found much damage by the large intestine to colon connection (illeo-secal junction?)...and they took out that chunk as well, about 12 inches (so, B12 shots every two weeks).

About diet, I do have a few thoughts, and I won't be offended if you don't take the advice...this is what worked for me. Keep a food journal and keep track of symptoms. When you have pain flares, go back one or two days to see what it was that hurt you. For me, it was carbonated beverages...LaCroix water caused me to flare right away. Nuts and peanut butter too. Tomato/spaghetti sauce causes an occasional flare. I now follow a low residue diet, which you can find on line easily. During flares, I go to basic comfort foods (you should be able to find those from your journal too...when you're feeling good, what did you eat 1-2 days before?) My comfort foods during flares are, Cheerios, bananans, rice and tuna fish. Takes my pain and diarrhea away in a day.

Also, on advice of my doctor, I do run a cleanout monthly...which is the same as colonoscopy prep...four bisocoydol/exlax pills at the same time; wait two hours. After two hours drink one cup of liquid every 15 minutes for two hours...liquid is 238g of Miralax in eight cups of gatoraid. You'll want to be sure your doctor agrees with this before trying it. Much of my pain came from ...stuff stuck inside, and sitting there right on top of the inflammation points. Running the clean out makes it much, much better for me. I now can't remember the last time that I had pain...it's been several years, and I used to have pain all the time.

Again, this is what worked for me...your doc will best be able to tell if this would work for you. If I can ask, what was the area of your resection? Did they repair or also remove? ...no offense if you don't care to share. Also, you were diagnosed in April last year, and it would have taken some time to schedule your surgery...In my own experience, it took about six months after the surgery to return to my normal energy levels and ability to get around. When was your resection?

 

[G'day]

...and you did tell me when you had your surgery. Sorry! I re-read, and missed it. You're about four months after your surgery, so you'll have cabin fever and frustration that you aren't all the way better. Do look backward in time to right after your surgery...and compare that with how you feel now. It won't feel like anything day by day, but when you look backwards, you can see how far you've come. Plus, at four months I was still using a belly band for stomach support.

 

[marshayates]

Hi G'day, i had 50cm (19+ inches) of distal ileum, all of terminal ileum, all of cecum and 20cm of colon removed. Surgeon put me back together. He cleansed my abdominal cavity with antibiotic wash two times bc the abscesses had drained into my abdomen and i had a perforation as well (glad i was knocked out...i googled how they wash an abdominal cavity...not pretty)) lol)
I try keeping a journal but i eat so many different things in fairly small amounts many times a day. Trying to not lose weight. Dont wanna look sick. My surgery happened without being planned really. I went to the hospital for IV antibiotics bc i was septic. Doctor told me i woukd be there a week. Had another CT less than a week from the time i had my f/u CT, that night I had a consult with the partner of my GI doctor, he recommended surgery right away. Next day was seen by surgeon and he did the surgery after i had a couple more days of antibiotic therapy.
My doctor says my case is not typical. How is my crohns unlike yours? They seem to be fairly similar. Im sure ur on Entyvio bc u failed hhumira and other crohns meds?
Thank you for sharing your energy lvls after surgery. That gives me hope that after a couple more months i may be normal...lol

 

[mamagus]

i'm reading this thread - Marshayates and G'day - thank you for sharing all this.
Had surgery in June 2013 - two feet and appendix gone. follow up colonoscopy shows ulcers, second follow up shows ulcers are getting worse. lovely.

i'm on mercaptopurine and doc wants me to go for second opinion - maybe go on more mercaptopurine, or combine it with remicade - so i'm reading all these threads thinking maybe there's another option.

love your idea of a food journal - and including notes next to the day - felt good, felt like crap... i don't do that, but i think i should give it a try.

do you find you're more emotional whenyou don't feel good? are you tired?

do you know if the vedalizumab can be mixed with other meds? or does that increase your risks for other diseases (lymphoma, etc.)

wishing you both remission!

 

[marshayates]

I actually just asked my GI doctor if my crohns is causing ulcers/abscesses at anastamosis (will find out when i have scope feb 6th), can i go up on the amount of Entyvio or can we combine it with something other than imuran (bc imuran did not work for me). He said that since Entyvio is so new he didn't know if anyone had combined it with another medication or increased to dose (from 300mg to 600mg) or increased the frequency of infusion (every eight weeks but since only hilding me about 3 to 4...possibly doing infusion every 4 or 6 weeks). My GI said he will research and let me know when i have scope. Im trying to stay away from Remicade as it is also a chemotherapy drug and has many side effects. Actually, all crohns infusion meds have roots in chemotherapy (research is interesting sometimes).
Im sorry to hear ur abscesses are getting worse. My primary care doctor also has crohns and said it took him 10 years to find out what he can eat without causing problems. Im trying my best to covert to a more natural (paleo) type diet. Currently reading 'The Makers Diet'. The author had a very aggressive type crohns and through diet became symptom free. I will keep u posted if it works...
Stay positive

 

[CLCH87]

From my experience, you can mix Entyvio with some other medications that are not TNF blockers. So I was on Azasan and now Entocort with it. Possibly adding a different one since the Entyvio is only lasting 6 weeks for me, and I had my 4th infusion on January 13th. Hope that helps.

 

[marshayates]

Thx CLCH87. I am on 3 Entocort daily too. I have been on Pentasa, Prednisone and Humira (can't recall any others at the moment). I was really curious if I could go on a nonspecific TNF blocker along with the Entyvio. The Entyvio is specific and I would really like to find remission. Have you by any chance been on dual TNF blockers before or received and infusion treatments closer together for a period of time? I had my 4th infusion January 5th and I am really dreading the next few weeks until my next infusion on March 5th. Is Entyvio working for you so far? I was on Prednisone but had little relief and the side effects of 40 mg a day was not working. So, my doctor put me on the Entocort in June and I have been on 3 a day plus whatever 6ASA or TNF blocker. I can tell no difference with the entocort either. I am thankful to not have the side effects of the prednisone even though the entocort is a corticosteroids. Does the entocort help you a lot? Sorry to have so many questions but it's frustrating finding things that work alone or with other meds.

 

[CLCH87]

Have you by any chance been on dual TNF blockers before or received and infusion treatments closer together for a period of time?
Does the entocort help you a lot?

Before I was on Entyvio I was taking Cimzia and was doing injections every two weeks since I was getting worse. When we finally got the approval for Entyvio my doctor told me that I had to stop the Cimzia and wait an additional 3 weeks to make sure it was completely out of my system before I could get my first Entyvio. He told me that being on a TNF blocker while on the Entyvio was dangerous. He put me on Azasan for the three week gap and then I began my Entyvio. Our insurance begins over in October (my husbands job has their fiscal year begin in October so our insurance does too), so I was no longer able to afford the Azasan as they wanted over $200 for 30 days worth. My doctor said that it was fine to just try the Entyvio and see if it was working. After my loading doses I got a lot better, December was the best month I had in over a year. But the week before my infusion is when it went down hill. Now the Entocort has been added for the last three weeks and honestly I don't think it's doing anything. I've seen a couple of people on Methotrexate while taking Entyvio in the other thread and am going to see if we can try that instead of Entocort.

I hope that helps somewhat

 

[marshayates]

It does. Thank you so much for sharing CLCH87. Most of December was good for as well. It seems our loading doses of Entyvio were around the same time. Keep me posted on what your doctor adds and how ur doing on the Entyvio, if u dont mind. Maybe us sharing information about the drugs will benefit us.
My husband's insurance starts all over in January so i will find out next week what's not covered well anymore on my oral prescriptions...ugh...I love insurance but it can be a bear sometimes.
Have a great day/night and thanks again.