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Anyone have a hiccup like this?

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Posted 5/2/2018 2:46 AM (GMT 0)
Been on entyvio since late October, not sure how many infusions I would say 6 by now. Anyway, it’s been slow working like I knew it would be, BUT my symptoms were decreasing when I was comparing them over time. Was hit with new disease diagnosis and have been stressed for Weeks and seems like I’m goinf backwards in a way. I’m noticing some blood in stool which I haven’t had in over a month, and feel like I have just a slight increase in amount of BM times: it was down to about 2-3 a day and now it’s at 4 everyday with one or two with a little blood. Anyway my question is has anyone ever taken steps forward and backward and it still work? Is it possible to have hiccups? Also maybe due to stress? I just hope it’s still working. My GI said he’s not too worried about it and said he’s seen before that healing isn’t always linear and sometimes it could happen, but don’t know if he’s just saying that? He probably wouldn’t but just wanted to see if any of you had ever experienced going slightly backwards or not going completely straight up? Thanks in advance
Posted 5/2/2018 4:14 AM (GMT 0)
Are you on any other medication in addition to entyvio? Many people take combinations. That said, i agree with your GI, healing isn't always a beeline to 100%, it can include ups and downs. I think it's important for you to try not to stress and to keep trying to think positive. If you feel unstable, you can potentially add something to help get you back on track.
Posted 5/2/2018 5:27 AM (GMT 0)
Even if it’s like rectal uceris and I can’t be on that long term?

notsosicklygirl said...
Are you on any other medication in addition to entyvio? Many people take combinations. That said, i agree with your GI, healing isn't always a beeline to 100%, it can include ups and downs. I think it's important for you to try not to stress and to keep trying to think positive. If you feel unstable, you can potentially add something to help get you back on track.

Posted 5/2/2018 11:27 AM (GMT 0)
Healing is never linear. The road to remission is much like a rollercoaster ride, full of dramatic and repeated ups and downs. You can hold your hands up on the big drops if you're brave (I'm not and always chicken out lol). I can assure you that you will arrive at your destination (remission) with a smile on your face. Might also panic briefly for a second to double check that your keys and sunglasses didn't fallout on the darn loop in the track back there.

Yes, we can have blips/hiccups on the way and nothing is more discouraging and frustrating. If you have extra meds (like rowasa enemas) then take them to help calm things down. Do be patient. If you plateau long enough then add more meds.

Steroids, even rectals, shouldn't be used continuously for more than two months.
Posted 5/2/2018 1:32 PM (GMT 0)
Currently having the exact same hiccup with Entyvio....
Posted 5/2/2018 4:12 PM (GMT 0)
It’s just so easy to think maybe it just stopped working instead ?

iPoop said...
Healing is never linear. The road to remission is much like a rollercoaster ride, full of dramatic and repeated ups and downs. You can hold your hands up on the big drops if you're brave (I'm not and always chicken out lol). I can assure you that you will arrive at your destination (remission) with a smile on your face. Might also panic briefly for a second to double check that your keys and sunglasses didn't fallout on the darn loop in the track back there.

Yes, we can have blips/hiccups on the way and nothing is more discouraging and frustrating. If you have extra meds (like rowasa enemas) then take them to help calm things down. Do be patient. If you plateau long enough then add more meds.

Steroids, even rectals, shouldn't be used continuously for more than two months.

Posted 5/2/2018 4:16 PM (GMT 0)
Really? I’ve posted in my girls group and nobody could relate. I’m sorry it’s happening to you too, I really hope entyvio can still work.. you should email me so we can compare experiences if you would like, my email is ***

IntestinalWasps said...
Currently having the exact same hiccup with Entyvio....


[for your privacy, please add your email address in your profile vs posting it directly]

Post Edited By Moderator (notsosicklygirl) : 5/2/2018 12:28:00 PM (GMT-6)

Posted 5/2/2018 5:13 PM (GMT 0)
I tried Entyvio and after my 4th infusion began with a new and totally unexpected disease called pyoderma gangrenosum which severely affected my skin. I only mention it because you alluded to a "new disease diagnosis", which was my case as well.

After going through hell getting it under control Drs admitted they are seeing skin and eye problems with patients on Entyvio, although they wouldn't give me figures.

I don't want to freak anyone on Entyvio out, but if I (or my dermatologist) had known this was even remotely possible we would have been on the lookout, would have known what it was and treated it aggressively.

I am back on Remicade.
Posted 5/2/2018 5:32 PM (GMT 0)
Yea remicade didn’t work for me:/ and I got diagnosed with PSCsad which is the scarring bulge duct disease that leads to liver failure over time it’s a manifestation of UC or some kind of link because 75% have IBD who have PSC! I would hope entyvio didn’t induce it but doctors suspected and tested me for tbis when I was 3 so I have a feeling not from entyvio. I’m sorry to hear something came from
Yourssad Its such an unfair process!


Guategirl said...
I tried Entyvio and after my 4th infusion began with a new and totally unexpected disease called pyoderma gangrenosum which severely affected my skin. I only mention it because you alluded to a "new disease diagnosis", which was my case as well.

After going through hell getting it under control Drs admitted they are seeing skin and eye problems with patients on Entyvio, although they wouldn't give me figures.

I don't want to freak anyone on Entyvio out, but if I (or my dermatologist) had known this was even remotely possible we would have been on the lookout, would have known what it was and treated it aggressively.

I am back on Remicade.

Posted 5/2/2018 7:34 PM (GMT 0)
I just put my email in my bio for you to email me!

IntestinalWasps said...
Currently having the exact same hiccup with Entyvio....

Posted 5/3/2018 12:38 PM (GMT 0)

NeedUChelp said...
It’s just so easy to think maybe it just stopped working instead ?
It cannot just stop working, medications always have an affect on us. However, our UC can get more severe and necessitate higher doses and/or more medications to control.

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