Second Entyvio shot

Hi all,
I had my first Entyvio shot Feb 27 and second shot march 14. I didn't feel much improvement after first shot and a little blood. Just before the second shot i was getting loose bm and fatigue. After the second shot I had a small improvement in feeling better and BM are down from 4 day to 1 day and solid. Energy levels are up and I feel more positive psychologically. Plus joint pain has reduced 80%.

I am hoping this new drug will improve my condition after the next 2 to 3 more shots (IV).
Doctor says to stay on 10mg prednisone for the next month.

Also still on sulfasalazine max dose.
Will keep you posted.

I'm still waiting to see if I'll get approved for Entyvio at a cost I can afford. Will be watching for your updates as I'm curious about what to hope for/expect.

I just had my third infusion of Entyvio April 10.
Since my March 14 infusion, my symptoms slowly started coming back and the first week of April, I had joint pain and fatigue and some blood the day of the April 10 infusion, but the symptoms were not as bad as before i started Enyvio.
A few hours after my April 10 infusion, my symptoms improved and the morning after I feel much better. Joint pain gone but some lower back pain and a little pain in Biceps and BMs are two a day and solid. Nurse says that health improvements begin after 3rd or fourth infusion, so hopefully my health stays stronger for longer till the next infusion June 5.

I'll record my symptoms here each week between now and the June 5 infusion.
I'm still on 10mg of Prednisone daily.

Also I have swelling in my right lower leg and ankle that I've had for 2 years and this has not improved. I assumed this was due to my Colitis and maybe related to leaking gut.

Hi Flowersgirl.
My first 3 infusions were 300mg and at 0,2,4 weeks. Not sure of the mg of the fourth infusion on week 8.
Have you had any improvements after your last infusion?

Hi FlowerGal Glad to hear you are feeling strong! How are you feeling today?

Its 2 weeks into my last infusion of April 10th. The first week after April 10th, I felt really well, solid formed large BMs and energy. I started feeling fatigued ion the second week around April 17th and today I'm feeling very tired and have very loose BMs and bad lower back pain and finding it hard to function.
I dont think ill make it to my fourth injection on June 5th without some help from the Doctor.

I'm going to see doctor soon and will ask him about the loading doses and 2 weeks apart. I think me being at 8 weeks kind of defeats the medication after only 3rd dose. 2 weeks makes more sense. I do feel.very positive effects right after getting the Entivio dose, so there is something happening!

Hi all - I'm here for my mother. She's 66, diagnosed with ulcerative colitis in March and is in the midst of a really horrible flare. She's on Entyvio and has had two doses so far. She's also on 10 mg of prednisone, eventually tapering to 5, but staying on 10 until the Entyvio "kicks in".

My question is - how does anyone know this drug is working? She's been on it for a month now and she's still in the bathroom 15-20 times a day. Before the meds, she was constipated with blood, now it's the opposite, which I guess means it's working? But her mental and physical state has deteriorated so much and is continuing to - I think the prednisone is making her nuts, and she has lost about 50 pounds. THIS is the medication working?

Her immediate pain is in her rectum and from spasming, and apparently the suppositories she has don't do enough to warrant the annoyance of putting them in, so she doesn't use them consistently. Her doctor has not given her Bentyl or anti-spasm medication and I can't figure out why - at one point because they thought it might be her bladder spasming, but they ruled that out...

She lays in bed 24 hours a day almost, except to go to the bathroom, and is becoming so impatient that she just wants to get surgery - I don't personally think she could survive surgery in her current physical condition. She barely eats, and is almost entirely inactive. She has no hope at all right now that her symptoms will start to improve.

Can anyone else offer some kind of hope? Has anyone ever recovered from a flare as bad as described? Does the Entyvio really start working at some point? Is there something she can do to ease her pain more immediately based on your experience?

Thanks for your help.

Was she on a higher prednisone dosage and tapered down? And if so did she feel better at a higher dose?

My last flare put me in a severe depression besides feeling so exhausted and awful with the symptoms. I did nothing but sit in my chair for weeks. I went on an antidepressant which helped some. A high dose of pred (started at 60 mg, tapering 10 each week) also helped tremendously. The suppositories need to be used consistently. May not feel like they're helping but you have to give them a few days. I haven't tried the mesalamine enemas but others here swear by them.
Is she on a maintenance mesalamine?

I've had 2 doses of entyvio and I am pretty sure its working for me. I've gained a few pounds and feel I'm getting my personality back, even though my pred is tapered down to 10 mg

Still early to tell if the entyvio is working yet -- they say it can take 3 months. I would up her prednisone, even if it does affect her personality -- unless it doesn't help her mental attitude and energy level.

I would also ask about a maintenance mesalamine. Its the standard course of care for UC. I hate taking medications too and hate that I had to go to the biologic -- I really hoped that I could use diet and the mesalamine to control the UC but it didn't work out for me... the only thing that made my symptoms temporarily go away was prednisone. I was on steroids 4 times over the course of the last year, and that's talking 2 months each time, so you can say I was on steroids for most of a year. Short term use is okay, especially if it helps her feel better. I know it can make you into a real bear and difficult to deal with, but then UC is difficult to deal with, especially in the beginning, when your head is still trying to wrap itself around the whole "why me" mentality, coupled with the not wanting to accept how your life and health has changed for the worse. And then knowing it's permanent is just bird poop on top of the cake, so to speak.

Generally UC responds best to multiple simultaneous classes of medication at a time. No single medication is a silver bullet. In addition to entyvio, i would add an immunomodulator (6MP or imuran/azathioprine), an anti-inflammatory mesalamine in oral format (asacol, lialda, pentasa or apriso) and in rectal format (rowasa or salofalk or pentasa enema).

Prednisone almost immediately relieves my symptoms of pain and bleeding and reduces the frequency. I really never found anything that relieved the pressure or discomfort of the tenesmus though -- and that constant feeling all day long is very wearing on you physically and mentally. Well, it did go away eventually, but it takes a while, and I guess the pred does help with it, it just takes a while. I'm really not all that experienced with UC yet since I'm only a year into it myself (mostly flaring, so unsuccessful at getting better until lately), and have only recently started using the butt medications myself, but I do think they help a lot, but again, consistent use is key with them. Clearing up UC symptoms isn't an overnight thing, though, it takes time, persistence, and consistent use of medications.

I would suggest that maybe you accompany your mom to her next doctor appt if you can, so you can take a more proactive stance, since it sounds like she's incapable of doing so on her own right now because it sounds like she's severely depressed, which I understand, because I felt the same way just a few months ago. I bet an antidepressant would help her in that regard.

Diet modifications can help or they can not have any affect at all, but most agree that you should modify diet during a flare. Cutting out gluten and dairy is something to try. During a severe flare, you should probably not eat a lot of fiber, but stay on a low residue diet with calming and bland foods like chicken, fish, bone broth, and only cooked veggies and fruits. Some people tolerate bananas well and others don't. Eggs were always my comfort food, but some people have trouble with those. Basically, eat a very basic diet, and if there's not further discomfort, try adding foods in slowly to see how they're tolerated. Most people that are successful with diet modifications do best on the SCD diet, but there's also the AIP (auto immune protocol) to check out, the low FODMAPS diet, and the Paleo. Basically they're all closely related. Confusing? Oh, yeah!

UC is such a fun disease! (HAH!)

mizzemm said...
ha, thanks - i see you had diverticulitis as well; my mother was diagnosed with it about 15 years ago also. Is there a connection with UC?

I wish I knew! One doctor mentioned in passing that sometimes people that have had partial colectomies like I had end up developing UC, but I don't know if that's been proven or is hearsay or what.

mizzemm said...
She is speaking with a nutritionist who has put her on the diet you mention, so hopefully that helps. She's eating so little right now though that I'm not all that hopeful diet can do much....and what she does eat, she poops out almost immediately!

When I was at my worst, I could think about/smell food and have to go running for the toilet. Or take a drink of water. So frustrating.

mizzemm said...
I have spoken with her doctor on the phone, she made me a healthcare proxy, but going with her is tricky - she is really hating all the monitoring of her - my poor father isn't faring well with any of it either. He's trying to take care of her but she's being pretty mean to him. She's just had it with everything.

I hope something works soon.

I'm your mother's age, so I don't know how I'd feel about my kids going with me either, but I had to go through this with my mom when she was developing dementia. It's uncomfortable to push your way in, but it's for the best. Maybe you can appease her by saying you need more information to inform yourself in case you ever "inherit" the conditions. I'm sorry it's so tough for her and for you and your dad. I hope she improves soon, too. If she hasnt had any improvement lately, maybe it's time to re-visit the doctor to inform them of that and to see what can be added to the arsenal.

Uceris is manufactured by Salix and they have a patient assistance program, which I qualified for. They will send you a 3 month supply (with refills) for free. Problem is that getting qualified takes time (probably 2-3 weeks?). And if your mom is on medicare, they will make her apply for Medicare's Extra Help program -- which takes 4 weeks or so, but they will give her a temporary acceptance if she qualifies. Here's the link:

https://www.salix.com/about-us/corporate-responsibility/patient-medication-assistance

They make both a pill form and a rectal foam form. I also get my Apriso (mesalamine) from them for free. And they're very nice and easy to work with.