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Ulcerative Colitis
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Posted 7/22/2014 10:16 PM (GMT 0)
well just home from GI follow up. I hate this  UC.    Just had to say it.

Started with Remicaide.... great for a few months... then antibodies, then on to Simponi.. also great for a few months, now GI thinks building antibodies. Can not take azath. tried... nausa.  Well  now he wants to get me off all prednisone and try entyvio...  I read the Rx insert and now wondering if this is a good plan.  PML risk??? great, my brain is all that is left functioning with this UC...  MD said it is safer than Remicaide and Simponi.  Any thoughts?

Posted 7/22/2014 10:50 PM (GMT 0)
Entyvio is not supposed to have any PML risk. Don't believe even one person in the trials ever got it. The drug is somewhat similar to Tysabri and that does carry a PML risk.
Posted 7/22/2014 10:52 PM (GMT 0)
thank u ... I just get anxious with these dangerous meds
Posted 7/22/2014 10:54 PM (GMT 0)
I heard there was no risk of pml. Did you ask your gi? I think entyvio seems like a really great option. I am happy it was approved. There was a post recently about people on he board who started it recently. I don't think we've seen any miracles with it yes unfortunately but I guess time will tell. I think the members said it can take up to 10 weeks to be effective. Did you hear that?

Did you try humira?

Did you respond to remicide and simponi quickly?
Posted 7/23/2014 12:17 AM (GMT 0)
Remicaide and simponi worked fast. Remicaide, noticed improvement almost 2 days after treatment. Worked from Sept to November and never had a problems. Then noticed never as good as the first months for about 1 year. Simponi started this last dec.... again worked great with improvement in a few days. but last 3 months noticed the week of the shot had uc symptoms for about 6 days. Told me today to taper off prednisone and if I flare will have scope in Aug.... was at Prendisone 40mg in Dec but am at 20mg now. Have been on prednisone for 2yrs. Starting tomorrow will drop off 2.5mg per wk. He just said entyvio is much safer to use and feels it would be more effective, that I should have had better results from the Simponi. States he feels that my body's immune system is overactive and building the antibodies and intends to use Benadryl with the Entyvio to reduce this. Never had humira. I have been scoped... almost every 6-7 months for the last 2 yrs. Said colonoscope will help get insurance approval.
Posted 7/23/2014 12:20 AM (GMT 0)
You were on ored while on remicide and simponi?
Posted 7/23/2014 12:25 AM (GMT 0)
yes .
Just hate to think of another IV med. I can stick anybody and give injections and it does not bother me... but am a horrible patient when it comes to needles. I count every drop dripping in. The first Remi treatment was horrible to sit through... and it was just me.
Posted 7/23/2014 12:32 AM (GMT 0)
It seems pointless to take all these meds and still be on prednisone. If I were still needing pred, I would consider the other treatments unsuccessful. Have you tried uceris? Less side effects than pred and lower dose but can be effective
Posted 7/23/2014 12:42 AM (GMT 0)
we talked about Uceris today... but GI said to come off completely between now and mid Aug. We will see how thinks go. I agree, I do not see taking prednisone and the others meds too. We also had that talk and he stressed that he wants me to get to a higher level of control. Also resorted to pull ups last year. He fussed because I will not complain .... said most people that had the degree of UC that I had in Dec would be asking for pain meds and or be in the hospital... and I said I was ok. I do not hurt and I am thankful for that. I have voiced more here than to anyone. Thanks for letting me vent.
Posted 7/23/2014 1:02 AM (GMT 0)
You're always welcome to vent here. We understand. I am actually in Similar shoes. Not doing great with my uc and don't know what's next... I really hope things improve for us. I won't take pred though would rather be on the toilet all day. You're lucky you're not in pain, one of my big problems is cramps :)
Posted 7/23/2014 2:37 AM (GMT 0)
I started entyvio today. It's a very quick infusion compared to remicade. Almost took them longer to find a decent vain in me that the infusion ran. I was told there is not the risk of PML because it is gut specific, but because it is a cousin drug tysabri they have to warn people that there is a possibility.
Posted 7/23/2014 2:40 AM (GMT 0)
Entyvio does not cross the blood-brain barrier. That's why there is no PML risk.

I start Entyvio in a week! The pharmacy called me today to walk through the co-pay info and verify my information. Now they will ship it to my doctor's office and they will arrange for home or in-office infusion. Apparently that's less expensive than using an infusion center. My doc says I can work while I'm infused, if I want. The nurse will just sit in my office with me. I have a private office, so I can make that work. It should provide a nice distraction from the process. I'll likely do my first one at home, though. How cool is that?
Posted 7/23/2014 4:10 AM (GMT 0)
The reason there is no risk of PML is because of the protein it targets (doesnt have anything to do with the blood-brain barrier...). Natalizumab targets a wide variety of alpha 4 integrins, including those involved in the central nervous system (hence the connection to the brain). Vedolizumab is specific to the alpha 4 beta 7 integrin, which is only involved in interactions with GI tissue. Hence, no reason to be concerned about PML.
Posted 7/23/2014 7:15 PM (GMT 0)
How about going back 50 years and trying Sulfasalazine. I don't know whats up with all GIs. My GI suggested Remicade too and exactly for this reason (and craptastic insurance), I told her no. She put me on Sulfalsalazine and its been almost a year. So far so good.
Posted 7/23/2014 7:54 PM (GMT 0)
I was just prescribed Entyvio. My gastro issues have been fine, but I had arthritic inflammation pop up almost overnight in my fingers and neck. We talked about Humira, but I heard about Entyvio before FDA approval. The minute it was approved, i made an appointment. It took about 5 weeks (after FDA approval) to get it approved from Excellus, but I'm covered for a co-pay of $40.00 per infusion, which should start next week. The side effects are supposed to be minimal and aside from having to physically travel to the hospital for the infusion (in a cancer ward) it seems to be the answer. Time will tell.
Posted 7/24/2014 12:08 AM (GMT 0)
really appreciate the feed back.  I made up my mind today... entyvio .  I do not think is can be worse than what I have now and with it seeming to fail daily.... I have lost nothing to try,   Call my insurance today and have only a $40 dollar co pay. I am going to ask my Dr to move the scope up... no reason to wait and feel like this. Our local hospital has been great in the past about working around my job. Hope to not build antibodies..as GI says this is the last thing on his list.  Wish all of us starting this med a smooth trail.  Stay in touch
Posted 7/24/2014 1:00 PM (GMT 0)
I just spoke with a rep from Takeda. i was inquiring about the effectiveness of Entyvio with joint swelling. They didn't know. The overall opinion is that the drug is gut specific, rather than a a blanket drug such as Humira, so how Entyvio affects joints is still unknown. The thinking is that if the gut inflammation is quieted down, other body parts will benefit. Seems a little vague to me, but I'm hopeful that is what happens.

I've been relatively lucky in that my gastro issues have been managed with diet and lifestyle. i wouldn't even consider medication had the joint inflammation not appeared out of nowhere.
Posted 7/24/2014 4:04 PM (GMT 0)
Im very interested in this new drug for my son ,,,and so is he...he has done a lot of research on it. He has been on Remicade for almost 5 years, but now has another problem,,Pyoderma gangrenosum...and his dermatologist says it is related to his haywire immune system..sores appear all over his arms, and legs. The steroid cream isn't helping,,and the antibiotics are making his intestines worse. so he quit them. He is hoping like heck that this new Entyvio may be the answer to his immune problems,,and is making an appointment to talk to his GI about it. My husbands GI , a different one,,,never even heard of Entyviio...go figure. He also has a problem with healing,,,even a tiny cut won't heal,,,He read about that,,and it said it is called Pathergy, I believe or something like that...and it is very rare "phenomenon" but that is exactly what happens to him.
Before he got colitis about 12 years ago,,,he was the healthiest person I knew,,never even got the flu, a cold,,nothing...used to be a family joke how he never got sick...Well now he has all kinda problems and no one knows why or how this starts...he is 46,,, Such is life....but we sure will be paying close attention to this new drug Entyviio....Remicade helps with major flares, but colon still not healed at lower end. and now these sores....
Posted 7/24/2014 7:45 PM (GMT 0)
A rep from Takeda called me today and said I was approved through their patient assistance for 6 months. Aetna (my insurance) had denied my pre-approval. Now I have to wait for the doctor to schedule. I feel like I am jumping through hoops to get started on this.
Posted 7/24/2014 9:05 PM (GMT 0)
Assuming the drug works, and you will need constant infusions (more than 6 months) then what do you do after 6 months?
Posted 7/25/2014 1:02 PM (GMT 0)
Aetna approved me, but only for 6 months as well. The Entyvio prescribing information itself says "Discontinue ENTYVIO in patients who do not show evidence of therapeutic benefit by Week 14". So pre-authorization was only for a set time and then the doctor must show evidence it is helping. Week 14 is dose 4, while 6 months is a bit after dose 5, so Aetna (and Takeda in your case) are giving it a little more time to show benefit.
Posted 7/25/2014 1:58 PM (GMT 0)
That makes sense! Thanks for the info bania. I just wish my doctor would schedule the first dose.
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