Started Entyvio

Great news Blksteeda. Remember , we can only take one day at a time. Hopefully the good days will overtake the bad ones. :)

I'm still eh….flaring. I hate to even post on here b/c I feel so negative! I have had 4 or is it 5 infusions. One more before end of year.

Please blksteeda (& other Entyvio takers) let us know how it goes.

I'm on Entyvio about 11 weeks now and things are definitely better. Down to maybe 10-20 bathroom trips a day (that sounds like a lot but it is a major improvement... I can leave the house now. I've been uncontrollably flaring since July or August of 2013). I'd really like to know how this is working for others. I'm really not sure if my improvement is due to multiple Entyvio shots ($$) or if it is from a concurrent regular course of $0.50 over the counter Imodium (& a little Pred). I'm putting my money on the former (literally). I have a scoping next week that will tell if the Entyvio is working or if it will be discontinued but I'd really like to know how it is working for others.

Its weird that doctors say it's weird not to respond to this stuff. The response rate isn't very high for a lot of these meds, some it's only 40% or so... It's more likely you won't respond :( I really had high hopes for entyvio but I haven't seen any miracles.

I just reread what I wrote and it sounded like I was on entyvio myself. I am not and I haven't tried it. It is definitely a treatment that I was looking out for before it came out and I thought it was interesting and seemed like a great wave of the future. I really hope you and others have luck blksteeda - I know we have a few with great responses but it doesn't seem as dramatic as Remi.

oops.... I am laying in bed & I realized I actually made an error in my last post. Tomorrow actually is my infusion#3 ( not #4 ), It is 4 weeks since my last infusion. Now that that is cleared up, I can now go back to sleep......sleep tight all!!

Glad to hear GSA. Keep us posted on how you are doing.
Best wishes....

Hi blksteeda. Just read through all of these posts and just wanted to say that I'm pulling for ya. Hope everything settles out for you and with your last infusion, things start to seem normal again. I know it's hard but sounds like you are in good spirits, all the best!

Sorry about your pain.I'm assuming the Pred is done and there have not been too many options offered. Might be the year to retire that colon. Can't remember if you have Pancolitis or where your inflammation is . If you do take the surgical route, I suppose your best bet in So Fl is UM, but I have had mixed experiences there and don't know who Dr A works with on the surgical side. Might be worth a private conversation. Keep us posted. Dr A might want to retry Remi at high levels( if no antibodies- it's one of her moves). Works for some.

I went to my GI's office today to pick up the stool prescription and he decided he wanted to see me while I was there. We took some blood, did a gluten test and a few others and he sent me for a chest xray as well due to a lingering cough I've had for about two weeks. My face is also flushing and breaking out bad as if I was a teenager. It's very red. He started to talk about surgery and I mentioned to him that my iron was good as I had it checked a week before at my Hemotologist's office as well as my hemoglobin then he said he's not so sure about surgery. He's going to talk to the GI board at the University of Miami and pick their brain. I have a colonoscopy scheduled next Tuesday for my birthday (yay) to check to see if Entyvio has helped the lining of my colon at all. When I walked out of the xray room I looked at my image on the computer screen and I saw what I thought looked like fluid. There was a white area in my lung. I'm hoping what I was was wrong as I don't want to deal with fluid in my lungs again. I'll probably have to wait till friday for all the results. whew

notsosicklygirl said...
I had that type of lung issue recently. It's the worst. Actually made me stop worrying about UC because I got so ill. I am sorry you're having so much trouble. Do you think the entyvio is helping? I was on remicade 10mg/kg and i didn't see big improvement either. Such a downer. Nothing seems to work out for me. I do think in these cases, a surgical consult may be the best option, and going to a surgeon who you know provided your sister with a good result is very soothing to the nerves. I think I am going to go on a consult soon too. I just don't want to wait until I HAVE no options. Prefer to go now and get the low-down.

I have a colonoscopy scheduled on Tuesday to check and see the condition of my colon. Since my iron levels and hemoglobin were good he's second guessing surgery until he learns more. We'll see then if it's helping heal the lining of my colon or how much inflammation is actually there as I don't see any blood at all. He mentioned I may have a combination of IBS / Colitis. My nurse in my GI office who loves me to death was a nurse in the OR for the surgeon that did my sisters surgery so many years ago.

Good luck Blksteeda!  Hopefully Entyvio is working for you.