Starting Entyvio

Hope it works for you, Miranda. I am really feeling good. So glad I took this step.

Had my 2nd infusion yesterday.

The actual infusion went fine. No hitches. I actually genuinely like this place now. The nurses are really nice, and I remember many of them from my Remicade infusions of 4 to 5 years ago! The room itself has changed - in fact it's been through several changes - but I like this new room and hope it is permanent. (Where I used to have my Remicade is now Ward 19b; there has been much restructuring in my absence.) Personally I couldn't ask for a much better place to curl up in a comfy armchair for a couple of hours and read. They just need to get their tea-making facilities in order and it would be perfect. During the first infusion I was dying for a cup of tea; I waited and I waited, but no offer of hot milky drinks was forthcoming - I eventually had to ask a nurse if I could have a cup of tea. During the second infusion, I was asked if I wanted a hot drink; I said I would like a tea please and the nurse brought me a milky drink which tasted suspiciously like coffee.

Never mind, they'll get there eventually.

What's not going so well is my Crohn's :-( It seems to have flared up again over the past few days. More BMs, more urgency, more pain. On Wednesday night I was in agony after a dinner of steak and kidney pudding and cabbage (proper povvo fare but nice - my mum cooks cabbage well). I tried to wait it out for an hour but the slow, excruciating cramps of death weren't appearing to get any better, so I took two diclenofac and waited for the pain relief to kick in. Also felt sick as a dog. It felt exactly like a partial obstruction would feel; it's been ages since I've had one of those...

I also think I'm having fevers again, but without a thermometer it's hard to be certain. Last night I was shivering on the sofa, despite having the heating on at full blast for two hours. Took some paracetamol and codeine and sweated it out. It seemed to work, because last night I had the most refreshing night's sleep I've had in a while.

Sometimes I do have temporary bad patches and then it's okay again. I'm hoping it's one of those temporary bad patches and not an actual turn for the worse.

Thanks poop bro :p

I feel a lot better today, apart from an inexplicable left-sided pelvic pain. It was agonising earlier on; the acute pain faded fairly quickly, but I'm still left with an ache there. Feels like period pain, except it's too far on the left for that and I'm not on my period. Apart from that, so far my stomach has been better, touch wood.

Your parrot sounds rather cute <_<.

My 5th infusion is scheduled for 12/23, but I wanted to update this thread since I just had my colonoscopy today. No signs of active disease! There were some pseudopolyps from past flares on the left side, but the transverse & ascending were completely clear!!!! He did some biopsies to check for microscopic activity but I am soooo happy!! Entyvio is working really well for me!

Hope it's working as well for others too!

Great news CC!!!!!

Thanks everyone! I feel like I received the best Christmas present ever!!

NCOT -- Hard to believe it takes 2 weeks to read an x-ray! especially one that was ordered to check for a blockage (I am assuming that's the only reason what the dummy pill wouldn't go through). They could have read that think within minutes! Hopefully the pill passed and you just didn't see it.

Good luck for your 3rd infusion. I think I stated to see big improvements after my 3rd.

Had my 5th infusion yesterday. Felt a little tired after, but that could have been because I spent the whole day doing last minute Christmas shopping (I always procrastinate lol).

I got the pathology reports of the biopsies from the scope and no signs of any active disease! Most of the colon was completely normal and there were only patches in the descending and sigmoid that showed signs of inactive disease.

6th infusion was Friday. Still doing well with no side effects.

Had a bad sinus infection that took almost 3 weeks to finally clear even after a round of antibiotics (Levaquin). I was worried it was because of the Entyvio, but my PCP said that there is a bad something that is going around and it's taking most people 2-3 weeks to recover. Was nervous about taking the antibiotics but no problems, except I think they may have aggravated joint pain I have had for years (started pre-UC). I have a follow-up with the doc on Thursday and will ask him about it. There was a big warning about joint pain that came with the Levaquin. The pain didn't get bad until my last day taking them. Hopefully it's something that will go away!

Great news.

Hi everyone! Had my bi monthly infusion on Friday. Everything continues to go well. Zero side effects and remission continues! I met a woman there who was getting her 2nd infusion. She said she noticed a response already -- her bleeding stopped! Told her that was a really good sign to see a response so quickly! She has Crohn's and had bad reactions to both remicade and humira....she said her first infusion went well so she's hopeful.

Gotta say that I am loving a "normal" life. Still have one hurdle -- I can't seem to resist the urge to look at every BM lol Pre-UC I never looked at my poop. I wonder if I will ever get back to that.

Hope other Entyvio users are doing well. If you are just starting, give it a chance. I think after my 3rd infusion is when I knew it was working and by the time of my 4th I was in remission -- that would have been around week 14.

Best wishes to everyone!!

Can I ask why you get the extra bag of hydration? I've had 2 infusions so far. Was tired the day after the 1st but after the 2nd I felt really energetic and strong. I ended up with a bladder infection 3 days after infusion #1 and wondered if it was partly due to dehydration because I notice my mouth and lips are really dry after. Is that why you get hydration? Or is it supposed to help with fatigue?

CCinPA I'm glad you're doing well. Couldn't agree more with your advice on giving the drug a bit of time.

As for everyone else, hang tough! Had a colonoscopy today, still in clinical remission. Been on entyvio now for almost 2 years. To echo what CCinPA stated and keep it short, around infusion 3 I knew something (minor) was happening, it took a few more infusions before I knew I was in remission or close to it.

Hi Bananas08,

Ugh, so sorry to hear that! Step therapy (denying you coverage because you haven't failed other drugs) is so, so dangerous to patients. NY state (where I live) recently passed a bill to revise the appeals process, essentially making it easier for patients to appeal ST denials, but it's still such a pain. Did your GI offer to help you appeal? I know the procedure varies from company to company and state to state, but they should have some experience in helping appeal.