Entyvio, 1 down!

Has 40 mg pred worked for you before Joey?

Might be the pred... but if it holds you over while Entyvio gets a chance to worm... well then, Yahoo! :)

Good luck everyone trying the new med out!

Same for me as Kat... I've tapered down to 10mg and I feel like I'm improving. My bms are more solid (completely liquid before), I've slept through the night 3 days in a row which is amazing. Don't want to get too happy yet, still could be the pred, but I do feel better. Big problem for me is gas now.... That might be a good sign. Does your daughter have more gas now Kat?

Had my 2nd infusion yesterday and 3rd will be Aug 11th.

Love the updates.
Each day has been getting better. I've been waking up, having a small, solid BM in morning, sometimes two... Then nothing the rest of the day. No blood. No D. Still on 40mg pred. Ready for infusion #2 on Tuesday. So confident, booked a hotel room at Hard Rock in Biloxi for tues and wed night. It's been a long 4 months and my wife deserves a couple of nights to relax... So we are going for it.

Had my first small setback this evening, cramped up and had urgency immediately after eating dinner, but it passed in about 30 mins and feeling good again.

Best of luck to those who have started Entyvio, and to those of you about to try it.

Joey: I'm not on entyvio but just wanted to say that I'm doing pretty darn good and once in a while I cramp up, feel urgency for a while, and then it just goes away. Unfortunately when it strikes it sure doesn't feel like it is going away so you never really know for sure until after the fact. Sure beats the old days though.

That's awesome Katsmom. I really hope she's off pred and feelign 100% soon. Same for you Joey.

My daughter's note to me today was interesting.
Yes on the gas question-more. It gave her pause, as it is usually the first symptom of worsening, but she followed with " I am definitely getting better". Yesterday 6 bms but at 8 already today at 1pm. No stand alone blood," huge improvement with the blood" and less pain by a lot.
"Progress not as straight uphill as it felt with Remi,but definitely on an uphill trajectory"
I will take it, says the mom....

Same here Kat, I feel like I'm trending upwards, feel good a lot of days and suddenly one day take a big hit and double the BMs for no apparent reason (and really smacks up my confidence)....and back to the new "normal" upward trend the next day. I feel pretty good overall, I'm being very cautious about getting too optimistic because I'm afraid of being let down. Once I'm completely off the steroids (next few days, maybe a week max), and a few weeks later if I'm still improving I'll get happy.

I talked to my doc about the gas, he said it could be a good sign that the colon is healing - since I'm going less often in general and the colon is still damaged it's still creating more gas, so I end up feeling more gassy (usually it's just at night for me though and sometimes in the morning).

BTW Kat, if you don't mind me asking which doc does your daughter go to? There was a girl at the docs on both days I was there starting Entyvio at the same time - and he said she seems to be improving at the same exact rate as me....she's down to 10mg also. Just wondering if the world is really that small. :)

Katmom, how did the dr re introduce the Remicade when your daughter tried it a second time, and how long did she try to use it again?
Did she have good success the 1st time on it?

Thanks

Had #2 today, went well. No issues until tonight dealing with leg cramps. Charlie horses in both legs, from shin to toes. Have to keep standing up and stretching, and hopping in warm bath. But stomach is feeling good, fatigue not as bad. No headache or other issues.

Went to doctor as well, he is tapering me off pred, down to 20 from 40 for the next 10 days. Adding a probiotic (flora star?). Hoping to keep things in the right direction, or even keep them the same as they are now. I feel so much better and can function again.

I'll update with any other news, and looking forward to hearing how others are doing on this.

Joey: The leg cramps are probably due to prednisone because it depletes your potassium levels. Eating a banana a day should help with that. It's possible that the infusion worked in conjunction with the prednisone but prednisone all by itself is famous for that.

I am starting Entyvio tomorrow. This is my last hope before surgery option. Has anyone had results yet on Entyvio? Been able to get off steroids?


Female, 27
Diagnosed with UC May 2013
Been on Humira/Remicade (not efective)
Been on Prednisone since diagnosis

Wasn't this already brought up in this same thread? The answer is no, you do not need an immunosuppressant.

Entyvio is gut specific, not systemic such as Remicade, and some other biologics. Many doctors like to use AZA or 6MP to help the body to not create systemic antibodies to the systemic biologic drug, rendering the drug useless. Since Entyvio is not systemic the immunosuppressants are not necessary. I know this drug is new for doctors but it is your doctor who should be asking the Entyvio people this question, not expecting you to provide the evidence from someone on the Healing Well Website Forum.