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Posted 3/31/2020 5:32 PM (GMT 0)
Had 2 infusions, will have another in 3 weeks and I feel nothing, Diarrhea sits at 12-14 runs. No appetite and nasal congestion and some pain in the gut area.. I do have more perianal burning problems, if only I could heal the swellings and splits, then maybe the rest would feel better Other than that, it's neutral. What's the chances of it turning around and working for me? I know the doctor will check me in 3 months time, but hope he won't continue too long if it doesn't do anything to help me. Boy, am I tired of all of this as I'm sure many have gone through the same thing.
Posted 3/31/2020 9:36 PM (GMT 0)
Can't speak from experience, but have heard that Entyvio can take longer to reach a therapeautic level needed. A few months time might be in order. If you don't see any positive effects after that, I would consider transitioning. Stelara seems to be getting extremely good reviews. That might be a consideration for you.
Posted 3/31/2020 10:57 PM (GMT 0)
Thanks I'll check into it, just incase I need another treatment, but I wonder if it is covered in Canada?
Will see what I can find on it?.
Posted 4/7/2020 12:56 PM (GMT 0)
I am Canadian and I think Stelera is covered in Canada as long as it is recommended by the doctor. So probably!

Hope you feel better soon.
Posted 4/7/2020 11:58 PM (GMT 0)
Also Canadian. If you're eligible for the Trillium drug program, Stelara is covered as a "limited use" treatment. This just means it's covered for "special medical circumstances". You can check their website for more information.
Posted 4/13/2020 8:57 AM (GMT 0)
Entyvio takes about 13 weeks to start working and 6 months to see full effect.
Posted 4/13/2020 2:58 PM (GMT 0)
Thank you, well I'm at about 5 weeks, so way too early in the game to tell. I have another infusion next week, then nothing for 2 months. Let me ask, does this medicine work in between, like is it working in between infusions? I would think that it would be out of the system having nothing for 2 months time? It's a very neutral sort of drug outside of a runny nose, which I'm assuming must be a side effect because it won't stop!
Posted 5/12/2020 9:45 PM (GMT 0)
It's 2 months since I had my first Entyvio fusion. I've had 3 so far and will have my 4th in mid June. With the first 2 fusions, I was okay, outside of a short fever and nasal drip. Since the 3rd fusion I really haven't been feeling well, bowel symptoms are worse, the nasal drip continues from morning to night unless (I take an allergy pill) and nausea and weight loss. I seen the GI today and he wants me to continue to keep trying to take questran to slow the diarrhea down. He offers no other bridge therapy until entyvio kicks in? I don't know, sometimes I feel so misunderstood. I feel he isn't listening when I tell him how I'm feeling? Today he guilted me, I think quite unintentionally by saying that by my refusal to go on Entyvio sooner, I missed out on many opportunities? That kind of made me feel bad and to blame, that I am in the place that I am because I didn't go on this med sooner, so brought it on myself.? Maybe that is what I need harsh words to try harder?
Posted 5/26/2020 6:32 AM (GMT 0)
I've been on Entyvio for 6 months and my GI didn't put me on bridge therapy either. (In hindsight, I should have been on something cause I don't think it's doing all that much for me.) After a BAD flare last month, he added entocort, which is helping. He also bumped me up to infusions every 4 weeks...but I'm not convinced. Especially since I've started feeling agitated & having increased fistula pain 2-3 days after Entyvio. (I'm sure he'll think I'm crazy.)

Sometimes I think it's easy for doctors to blame us for not doing this/that because they're not the ones having to live with the decisions, potential side effects, etc. I've learned to balance what my GI says with what I feel is the right course of action for me.
Posted 5/27/2020 12:53 AM (GMT 0)
Thank you, I'm glad the doctor put you on entocort. When flaring while waiting for the medicine to help, isn't it possible that more damage is being done to the intestine, and more scar tissue is being built up without bridge therapy? That's an area of concern for me because I already have strictures. 4 months or longer is a long time to wait for med to work if one has active disease? On my end, no change for the better, totally miserable, still have the drip and sneezing indoors and outdoors (since March). . Active bowel. My hair has really thinned. Super thin and can't put on weight. When I tell my GI, he doesn't seem to acknowledge that they could be Entyvio side effects? I am so tired, and sleep on and off during the day and night and feel just outright sickly and find it hard to function normally?
Posted 5/27/2020 12:02 PM (GMT 0)
Dorri, you are probably getting some benefit from it, just not as much desired. Why not call the gi & ask for a script of Entocort, all he say is yes or no.

I don't know where you live but seasonal allergies are bad this year. Have you tried anything OTC for the drippy nose? I use Flonase, or consider trying some of the other ones, claritin or zyretec.

I don't know how long your flare up has been going on, but it sounds like you are pretty bad. Not able to gain weight, thinning hair, don't be so quick to blame this on Entyvio. In a bad flare this is not uncommon. Poor nutrition will cause both.

I hope you get to feeling better soon.
Posted 5/27/2020 2:06 PM (GMT 0)
You are right, I could be flaring which to me means that entyvio hasn't kicked in yet? My other problems could be the result of a flare and a depressed immune system and have nothing to do directly with entyvio? But I do feel differently since being on this treatment. My husband asked him for a bit of prednisone to help me till it does?. The Dr. said when Entvyio kicks in, it will be like prednisone but he wouldn't give me any, so no, I won't bother asking him for entocort because I know what his answer will be?.
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