Crohn's Disease Forum » Treatment » Entyvio/Vedolizumab » Entyvio (Vedolizumab) Support Group


 
04-20-2017, 09:45 PM   #1171
ronroush7
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Thanks, Doug. Did your​ doctor do blood work on you?

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
04-20-2017, 09:49 PM   #1172
DougUte
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No. They are going to do blood work at my next appointment.
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Surgery Oct 12, 2010

Crohns Medicines:
Started Humira June 22nd, 2011
Increased to weekly injections on November 1st, 2016
Due to the insurance company, Humira ended on January 31, 2017.
Started Entyvio February 9th, 2017
Loperamide 3 capsules twice a day
Vitamin B6, B12, Folic Acid
Vitamin D3 10000 I.U.
Nature Made Multivitamin
04-20-2017, 09:51 PM   #1173
ronroush7
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Ok. Thanks.

04-20-2017, 09:54 PM   #1174
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I was told they were supposed to check mine somewhere around my first infusion.
04-25-2017, 04:52 AM   #1175
Norseman
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Bloodwork before my first infusuin here as well.
04-25-2017, 08:34 AM   #1176
Juulez
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They did a bunch on me and more when I get my infusion they said. I hope they hurry so I can start! I feel rotten. And I want my Med!!! Do I sound like a pouty kid🤞🏻😥?
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so much love, Julie
04-25-2017, 08:44 AM   #1177
ronroush7
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They did a bunch on me and more when I get my infusion they said. I hope they hurry so I can start! I feel rotten. And I want my Med!!! Do I sound like a pouty kid🤞🏻😥?
I am currently on Humira. It is not doing anything but I am supposed to keep doing it until they start the Entyvio. Waiting to hear when a nurse is coming to administer it. No. You don't sound like a pouty kid. I know how you feel.

04-25-2017, 08:54 AM   #1178
Juulez
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Thank you Hun!
04-25-2017, 10:54 AM   #1179
GI Jane
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I understand for sure not pouty. I'm so excited about this med and my gastro doctor is too. She told me yesterday that if it wasn't for this there was a 90% chance of the same surgery in the near future so now it could be a really long remission she believes. :-)
04-25-2017, 12:28 PM   #1180
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Mine said maybe no surgery either we will see after a few infusions she said!!!!!!
04-25-2017, 02:35 PM   #1181
ronroush7
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Support and prayers for you
04-25-2017, 04:04 PM   #1182
Juulez
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Thank you. I hope it works💜😘
04-25-2017, 08:30 PM   #1183
GI Jane
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Praying for no surgery needing. If you do invest some time in looking for seamless or silk clothes. I'm so skin sensitive it's crazy.
05-04-2017, 06:22 PM   #1184
ronroush7
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There was a doctor from the place that is shipping the Entyvio who said hopefully you will be able to go off some of your medicines after starting Entyvio. Has anyone been able to go off some meds after starting Entyvio?
05-04-2017, 09:48 PM   #1185
GI Jane
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Just had my treatment yesterday. Beside my pain meds and spasticity and sleep meds this is all I'm on now, no other Crohn's meds in other words.....yep out of it.
05-05-2017, 03:47 PM   #1186
Juulez
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I want my entivio!
05-05-2017, 04:42 PM   #1187
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I want my entivio!
Me too! !!

05-06-2017, 12:13 AM   #1188
DougUte
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I have had about 2 weeks of normal bowel movements. I have been getting better in my Crohn's symptoms while on Entyvio. It's been nice.
05-06-2017, 06:53 AM   #1189
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That is great ,Doug

05-06-2017, 02:23 PM   #1190
Juulez
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That's awesome can't wait for mine hope everyone else is doing better too
05-06-2017, 11:20 PM   #1191
GI Jane
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I'm rooting for you guys too. This is a great medication.
05-06-2017, 11:25 PM   #1192
ronroush7
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Thanks

05-08-2017, 05:33 PM   #1193
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Um...hi. I am 31, female. I went undiagnosed my entire life because I was an atypical presenter. They finally figured out the problem in November

I was never put on any other med- I haven't failed a TNF-alpha...but I went straight from 9 mg daily of budesonide to a bag of vedolizumab every two months solely. It seems to be working, but I've had some interesting reactions.

Every infusion day I'm exhausted, for one.

I lost ALL of my hair, for two.

My skin has decided now is a perfect time to freak-the-f***-out, for three.

I seem to be asymptomatic otherwise..which makes me think it's working...or...I don't need it in the first place? I don't know. My doc is a fantastic one though, she's one of the leading drs in the field- studied directly under Dr. Hanauer...so...I mean...I have to trust her, right?

Anyway- I'm glad there's a support group for this medication specifically.

Anyone else had any of the same side-effects I have, by chance?
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05-08-2017, 07:23 PM   #1194
Juulez
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You must be in Chicago. Hanaur was my old doctor. Good luck with your ibd and welcome!😊
05-08-2017, 07:54 PM   #1195
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Yay, Chicago!

Last edited by Asra; 05-08-2017 at 07:56 PM. Reason: embarassment
05-08-2017, 07:57 PM   #1196
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You must be in Chicago. Hanaur was my old doctor. Good luck with your ibd and welcome!😊
If you don't mind me asking, why did you leave Dr. Hanauer's care? Choice? Or did you move or something?
05-09-2017, 08:48 AM   #1197
Juulez
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I moved to Florida. Now have best doctor here got referred by old doc h. He has more of a personality too. But yes yay chi town!!!!!!
05-09-2017, 10:12 AM   #1198
ronroush7
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That is great, Julie.
05-09-2017, 10:38 AM   #1199
GI Jane
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I have some thinning of my hair now. My doctor said it more from not being able to absorb the correct nutrients then from the medication but now you make me wonder. Thinking of cutting my hair short so it wont be so noticeable if this trends continues. There is a hair skin and nails vitamin that helps some. Doctor also wants me on a good vitamin but they seem to upset my stomach so I like to divide it into one time the calcium the other meal vitamin c and so on and ya I like the gummies so it feels like a treat. I don't seem to get tired from the infusions but we have a great window to look out of and view of the Space Needle so it keeps my interest. When I was in a closed up room it just brings on tiredness for me. Try bring a movie on a tablet or something exciting like that to keep you awake and interested. Take care.
05-09-2017, 11:11 AM   #1200
ronroush7
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I have had hair thinning but wondered if it was from imuran.

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