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Dr is suggesting i go on Vedolizumab but i am resisting...need help

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Crohn's Disease
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Posted 9/10/2014 11:23 AM (GMT -5)
So just got back from my latest colonoscopy. to no surprise, the inflammation and ulcerations are far worse than last year. but i have not been on Humira for over 8 or 9 months,due to my other conditions. However, when I was looked at last time i was on Humira and there was active crohn's with some inflammation. to refresh, i have been on cimzia, remicade, methotrexate and humira. plus i have had resection surgery. nothing has actually clinically shown me in remission except for a few months after surgery. therefore, the DR wants to try vedolizumab. But i am resisting. I am concerned that it is so new that we dont have much history with patients who other other chronic conditions that take potent medications. Also, I rarely exhibit many outward symptoms, although i had a bad spell about a month ago. On Humira I had no outward symptoms or flares. The only issue i had was I got pneumonia while on it and was in hospital for 5 days. this med being so new concerns me that the hospitals wont have any history with how to deal with it it if I were to get sick while on it.

Am i being too cautious? also, the cost factor and the fact that it is an infusion treatment is a concern. I plan on moving to a more rural part of our state next year and while there is a hospital, they do not do any infusions. I must travel 1 1/2 hours away to main hospital for infusions. So, i am just not sure when I balance everything out, the rewards are outweighing the risks and issues.

i am just confused
Posted 9/10/2014 11:45 AM (GMT -5)
Hi miowpl,
What are your other options besides the vedo? If the inflammation and ulcerations are far worse, what choice do you have?
Posted 9/10/2014 5:14 PM (GMT -5)
hey gumby. we also discussed a course of Predisone and start Humira again
Posted 9/11/2014 7:52 AM (GMT -5)
Ok, but it sound like the Humira didn't work well last time, or am I not understanding? If the Humira was effective, then a round of Pred and Humira makes some sense, but otherwise, I'd go right to the vedo. I feel terrible that you haven't been able to catch a break. This disease can be relentless!!
Posted 9/11/2014 8:39 AM (GMT -5)
As I've said before, managing this disease always requires balancing the risk of not treating it properly vs. the risks of medications. The decisions affecting that balance are different for every person. By now I'm sure you know what happens to you when your Crohn's is not treated. What is unknown is how you will react to Entyvio. Yes, it's a new drug and thus the data on complications and side effects is small. But so far the data is showing that it's a safe drug, safer than the anti-TNF's. I've been on it for 8 weeks and have had no side effects whatsoever.

I agree with Gumby. If Humira worked before then try that again. It's easier to administer and you'd be less nervous about being on it. If it didn't work, then don't waste your time and start Entyvio right away. Entyvio will take a long time to start working so the longer you put it off the longer it will be until you start feeling better. After the loading doses, infusions are only every 8 weeks so you won't have to make the trek to the hospital too often. You also may be able to set up home infusions where a nurse comes to you and does it.
Posted 9/13/2014 8:33 AM (GMT -5)
update: my GI called me and we had a nice 20 min discussion. He went back and reviewed each scope over the past 4 years (since surgery) and compared that to what medications i was on. then he looked at the new one. HE suggested we go back on Humira, no predisone for now. He would reserve predisone in case i get a flair. he also suggested humira for now as he believed it was working whne i took it before, although it did not completed clear up the ulcerations. But never the less, it showed marked improvement after taking it for a year. He also said if I moved the vedo, its like we just keep taking options off the table and what would we do next? all of this makes sense to me so i agreed with him. he was waiting on the biopsies to come back just to lame sure there was no infection going on. He would call me when i gets those results and I can then start Humira. My wife and I are in agreement with him. Yes, I did get pnuemonia while on anti TNF medications, but that is a risk i understand, and i know what to watch for.
Posted 9/13/2014 9:44 AM (GMT -5)
Good.I know for me it is a relief when I make a decision so I am able to move forward. I hope all goes well!
Posted 9/13/2014 11:20 AM (GMT -5)
update 2: now i have 5 bm's 4 of which were "D" all with marroon blood. Have called the GI, they said to watch it. if it does not stop go to ER or if i starting feeling worse, go to ER.

one step forward, two steps back...
Posted 9/13/2014 12:48 PM (GMT -5)
oh shoot! Don't hesitate to go to the ER if you need to. Let us know how you are doing!!
Posted 9/13/2014 3:45 PM (GMT -5)
I'd go on vedo to be honest. Doesn't really sound like the Humira is doing enough for you. I agree with going to the ER if your bleeding gets out of hand. I've lost a lot of blood from this disease before, it's nothing to mess with!
Posted 9/15/2014 6:28 AM (GMT -5)
So I went to ER yesterday after speaking with my dr. I got admitted for observation. I am feeling better today and had no bowel movements last night, but am passing gas. Will be released shortly this morning. Dr thinks I had a combination of a little bleeding from the scope which was made worse by restarting blood thinners for my afib, and a little stomach bug. My wife had it early last week. No fever, no chills, just felt bad with two nights of bloody "D". He said he would do a course of prednisone since there was inflammation and more ulcers coupled with bleeding for what ever reason. He thinks this will help jump start things. Then start humira. So that is the latest. I need to fly cross country on Wednesday to make a presentation at a conference so I think the prednisone will help quickly. This assumes I have no other issues.
Posted 9/17/2014 12:16 PM (GMT -5)
Decisons like this are a hard one to make and i can completely understand because i was in the same predicament. I have taken Remicade (which cased Anaphylaxis), Humira (lupus-like symptoms),Cimzia - no response at all. But I came to a breaking point when I had to have a 2nd surgery only 4 yrs after the first one. I was running out of options for medication. I had my 2nd surgery and within a month I had active crohns in the area they just resectioned. I had an allergic reaction to Imuran after 9-10 yrs of use and I refuse Prednisone altogether because I now have hypo-thyroidism because of over-use. Plus it took forever to get off of it. Anyway my GI told me about a trial he was involved in and I refused to take part in..I didnt want to be a guinea pig. but after 5 months of not being able to calm the disease and not having anymore options i reconcidered.
I had to drive an hour 1/2 away but if it helped i didn't care at that point. but after 6 wks of treatment I saw HUGE improvements w/ only this medication and no other maintenance meds.
So for 2 yrs I had a glorious remission that I've NEVER had in the 16yrs I've had Crohns.
I look at it this way, the medication we take have tons of CONS. but when we look at our quailty of life we see the PROS of what we couild possibly be w/ the medications and thats why we choose to take them.
THere is no cure but a regiman of what can put us into a remission we ALL want.
you have to weigh where this disease has put you, i don't know if you have a mild, moderate or severe case of crohns but whatever it maybe you need to look at your quailty of life and judge the right now and not the "what if's of the future"
but for me I don't ever regret my partication in this trial medication because I would have never known what Remission really was without it.
Good luck!
Posted 9/17/2014 9:44 PM (GMT -5)
Thanks elexis. I am feeling better and have had normal bowels. I would said I have moderate case, although I have has resection surgery and the crohn's was back in 6 weeks. I just don't have a lot of outward symptoms. Bloody d is not normal for me. That is why we were concerned. That said, I struggle with iron deficient anemia and with overall weight at times as well as vitiaman issues. My real issue is balancing this with several other serious chronic conditions.

But I agree we will see where we go and change as necessary.
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