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Entyvio update

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Ulcerative Colitis
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Posted 8/11/2014 5:09 PM (GMT 0)
I have been hesitant to post, but there have been several inquiries about how the new drug is affecting my daughter. All 3 loading doses are in-last one Thursday. During the past 6 weeks, she has been showing increasing symptoms and had to up the pred to 30. Stools still between 12-20, at that point the counting gets goofy.
Labs not too bad-anemic from all the blood loss. Today should have been her flight out to law school, but she was too sick. Deferred until next year with a heavy heart.
We have been told that this drug is slower than the other biologics. Hoping to hang in there a few more weeks, but doc thinks surgery is breathing down our necks. SO, we might not be the success story we were hoping to be, but I don't want people to assume the same for themselves. This drug has had good trial results. They may find out later that it needs varying amounts or intervals, but they can only rx the trial protocols. I hope that it helps others, and us...pretty quickly. Doc is giving us 2 weeks, then you will find me on the Ostomy boards....
Sad around my house- a few dreams deferred. I'll update again shortly.
Posted 8/11/2014 5:18 PM (GMT 0)
So sorry :( Hoping she will get some relief soon.
Posted 8/11/2014 5:28 PM (GMT 0)
So sorry Katmom. Hope things will turn around.
B
Posted 8/11/2014 5:46 PM (GMT 0)
Sorry to hear this news Katmom. Hopefully this thing kicks in soon and your daughter starts seeing some symptom relief. :-)
Posted 8/11/2014 6:05 PM (GMT 0)
Wow Kat I'm really sorry to hear that, I've been wondering how things were going with your daughter. I have two young kids and one of the biggest fears I have is passing this disease down to them....I can't imagine what you're going through (I experience this life halting disease myself, but having to watch my kids go through it helplessly would be devastating for me).

Really hope things turn around for you soon, maybe it just needs more time with your daughter. My GI had a few patients during the trials and he some did not respond until after the 3rd infusion, hopefully that's the case with you. He gives it 3 months before deciding it's not working at all.

That being said, if it does come down to surgery, I personally know someone who has a j-pouch who's extremely happy (he had very severe UC like myself), and most people that I hear about having surgery are very happy with it.
Posted 8/11/2014 8:41 PM (GMT 0)
Thanks guys n gals:
It is easier for me to be patient as I am not spending every day chained to the loo. Think she is almost ready for surgery-guess it just gets to a point and you cannot take much more. Not even more hope-having been dashed at each turn before.
I am hopeful things just stabilize so that the meds get a legit chance to heal her. If she keeps getting worse the surgery and recovery will be harder. Think that's why the doc put a date on it for her. It actually was a positive, as life seems to just be around the next corner...this time maybe without the darn colon, life can add some sweetness. You all can feel what it's like to not be able to socialize with food or drinks. Even harder that you have done this since 15 yrs old- everything is different. People treat you differently, your lack of activities are misunderstood, your body takes on skinny/chubby forms due to the drugs, mysterious rashes-symptoms, unexplained pains, disappearances from commitments, moods that hurt on the inside, irrational understanding of all medical facilities/drug companies/insurance and their languages. Too much.
Thanks UCHater, gosh I hope this drug is your ticket. Faithmac, don't let this deter you from trying it. The infusion is short and painless- it is going to help so many. Her colon just may be too far gone, so time is not our friend. We will know in he next few weeks. Fingers crossed-prayer lists accepted-rabbit foot in pocket. Now you know I'm out of sorts.
hugs,
K
Posted 8/11/2014 11:02 PM (GMT 0)
I'm really sorry to hear this. :(
Posted 8/12/2014 2:52 AM (GMT 0)
So sorry to hear this, Katmom. I hope things turn around for the better soon with your daughter. I feel so bad that your daughter has been dealing with this since she was 15. I'm curious if your doctor was going to try the Entyvio with an immune suppressant at all. I know there is debate on this. If Imuran doesn't work for me, my GI wants me to try Entyvio, but he will be keeping me on Imuran. I know they combine them with the anti-TNF, but I don't know how the interaction is with Enytvio. I really hope your daughter can get some relief. Keep us posted.
Posted 8/12/2014 3:12 PM (GMT 0)
I recently finished up my 3 surgeries and I couldn't be happier with the outcome. I just feel so much better now without my diseased colon that was polluting me from the inside and all the meds that I needed to take. By the time I went for surgery I just couldn't stand taking anymore meds and dealing with UC any longer, I was begging the surgeon to get me in as soon as he could.

I woke up from my first surgery and I felt healthy again; I was like why did I suffer for 8 years with UC, I should of did this sooner. The surgeries are tough, especially the j-pouch creation and colon removal surger(ies) but they are manageable with some time and patients. I liked having an ostomy because it gave me my freedom again and I felt so much healthier with it.

I see that your daughter all ready tried Tacrolimus so you've done almost everything. I guess you could try Cyclosporine if you wanted, I've used it twice and while I was happy with Cyclosporine but I am much happier to be moving on from UC with my j-pouch.

One of my issues with surgery was finding a Surgeon that I wanted to use who accepted insurance; most of the surgeons in my area do not take insurance. I found an extremely qualified surgeon who accepted my insurance and I'm now healthy again and full of energy.
Posted 8/12/2014 3:29 PM (GMT 0)
Katmom, how long did they say it would take to see some results? Hope it starts working. Surgery is such a big step!!
Posted 8/12/2014 4:25 PM (GMT 0)
Wow. Two weeks? I've heard it can take 2-3 months for this med to be effective. Doesn't sound like the doc is giving it a decent chance. Hope it turns around soon.
Posted 8/12/2014 5:10 PM (GMT 0)
It can take 10-14 weeks. We are at 7. Most found some improvement along the way. Not a good sign that she has gotten worse though. Fear is that if she gets much sicker and has to add even more Pred(been on since Jan), the surgical outcomes are worse. I am trying to keep her stable enough to let the drug work. There is less blood, so that is something. She can't even sleep-had 9 BM's during last night.
Called for a surgical consult this morning-will probably use the head guy at U of Chicago-where we get our treatment. Don't know what options there are to discuss. Want to discuss fertility issues/scar tissue impediments. Throw that in with the mix of losing school, colon, etc.
Know they do surgery in 3 steps and the first one lapriscopically. Guess I have to learn a new world-just when I was getting good at advising on this one. Ha ha on me-guess not good enough.
Posted 8/12/2014 5:33 PM (GMT 0)
hey, keep remembering- "dreams deferred"- not dashed! Your daughter is going to be fine if she gets surgery, chances are she's going to feel so great you'll wonder why you ever messed around with entyvio. I know it's hard to take, but don't be bummed or sad- it's a whole new world for her! She's been sick for how many years now???
Posted 8/12/2014 5:34 PM (GMT 0)
No one wants to hear this I'm sure....especially since you're the parent....but surgery can be a huge blessing in disguise. It was for me. All the best to your daughter. I know all too well how she feels. It's scary stuff to face surgery but you really do get to a point where enough is enough. Who knows, maybe this drug will start working better in the next two weeks. Good luck.
Posted 8/12/2014 5:40 PM (GMT 0)
Katmom, you will find me on the ostomy board and the crohn's board too but I saw your post and update on the new medication and was curious. I was diagnosed at 21 (now 41) and finally, after an emergency surgery to repair a perforation, I can honestly say that surgery was the best thing that has ever happened to me. I am having my second surgery in October to remove the colon and rectum, move my ileostomy to the right side, and repair my hernia. I won't be able to have a J pouch but your daughter likely will be able to. I am so pleased with my ostomy. I am able to keep up with my 13 year old daughter, walk every night with my husband, travel the world, eat foods that I had never imagined I would be able to eat and finally work on completing my degree.

Surgery is a big, big deal and should never be taken lightly but it is life altering for most people. It's a bit of an adjustment, no doubt, but for me, it has given me back my life. I feel like a mom and a wife for the first time in 20 years. I had no idea how sick I was until I wasn't anymore!!!

I wish you the best of luck and will send lots of positive energy to you and your daughter.

Kelly
Posted 8/13/2014 1:57 AM (GMT 0)
Thanks all- will be hoping. Doc says to be prepared. We have had downhill slides like avalanches. I was also the Girl Scout Leader(surprised?). Must be prepared for next shoe. Need relief, however it must be.
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