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Posted 4/11/2017 2:41 AM (GMT 0)
I have my 2nd Entyvio infusion the day after tomorrow. Have had a tiny little setback -- 3 days after my 1st infusion, I developed a bladder infection, so was put on cipro for a week, which I just finished yesterday. Have been having a little bit of stomach pains -- nothing severe, but enough to let me know that this flare is not over yet. Mostly doing fine, still only 1-2 BMs a day, formed. A trace of blood here and there, and very mild cramping. Definitely could be the Cipro.

Sat. night, I felt really rough with upper abdominal pain, more heartburn-ish, but I was also bad that day and had some chips and nacho cheese and then some apple pie with ice cream for dessert. (it's so hard to resist some times!!!) Have been using Canasa suppositories every night. Waiting on my Uceris foam, which I got the okay on from Salix (no cost to me!!!), and they are delivering that on Wed. Hoping to start weaning off Prednisone when that comes. I went down to 25 mg, but haven't been able to go lower than that yet.

Also, been *really* tired the last few days. Have had to take some naps, and I never, ever nap. This weekend, I was so tired, I was just draggy, and didn't have the energy to do anything except sit. Also been having a lot of headaches, which have not been my typical right-sided migraine. These were more forehead/sinus/top of the head, and my migraine meds didn't touch them. Wondering if the tiredness and headaches are related to Entyvio. I expected that to only last a couple of days after the infusion, not a prolonged reaction. So, we'll see what happens after this next one.

Wondering if the UTI was related to Entyvio infusion/lower immunity, or just coincidence. Hoping just coincidental.
Posted 4/11/2017 8:34 PM (GMT 0)
I literally had my 5th Entyvio infusion today. No great improvement so far. Hmm.....
Posted 4/11/2017 9:37 PM (GMT 0)
Entyvio made my husband more exhausted than he has ever been -- so that may be causing your super extreme fatigue. Unfortunately, the fatigue lasted a couple of weeks, probably until the Entyvio was out of his system.
Posted 4/15/2017 12:16 AM (GMT 0)
Had my 2nd Entyvio infusion on 2 days ago on Wed. By that night, I was feeling very upbeat and strong, and that feeling continued yesterday and into today. Since I had the UTI after the last infusion (not saying it was related), I've been paying attention to the bladder this time. Noticed after the infusion that I could taste the medicine, a slightly acidic/metallic taste in my mouth (not bad, just know it was there), and also noticed my lips felt really dry/chapped and I was having to pee a lot. So I've tried to make a point of drinking lots of water, since I'm wondering if the Entyvio makes me just enough dehydrated to cause the bladder infection. I started to get really tired this afternoon, thought I'd have to take a nap, but it got better after I ate lunch. Getting a slight headache now. (just noting symptoms that might be related).

Have been *really* hungry. I know lots of people report feeling a lot of hunger on prednisone, but that's never been an issue for me, so I'm not sure I can attribute the appetite to that. I got down to below 100 lbs, so I need to gain weight, so this is a good thing. My appetite is really good, but have been eating some foods that I shouldn't, like a little bit of sugar. Cut back the prednisone to 20 mg yesterday. So far, so good.

There's a big discrepancy between the orders the hospital infusion center has and what the doctor wrote on the prescription in my chart that I accessed online. Will get that straightened out next week. The infusion center has me down for 4 loading doses, each 2 weeks apart, and I don't think that's the standard for Entyvio, which looks like it's 3 loading doses at 0, 2, and 6 weeks. Also a discrepancy on the frequency of the maintenance infusions. Not sure if the doctor changed the order, or if the hospital or nurse at one place or the other wrote it down wrong.
Posted 4/19/2017 2:16 AM (GMT 0)
I seem to be having delayed reactions to the infusions. about 4-5 days after, I get headaches, pretty severe, but not migraines (which are always one-sided for me). these seem to be more in my sinuses (forehead, anyway) and the top of my head. Looking back, I see the same thing happened after the first infusion. The first post-infusion headache was 7 days after my infusion. I took one of my migraine pills and it took it away, but 2 days later it was back and the migraine medication didn't touch it this time and it lasted for 2 days. This time, it was 5 days after the infusion. Migraine pill took it away, but it was back the next day. I didn't take another pill because I don't like taking them anyway, and it hadn't worked the other time anyway. Tried an antihistamine that I'd heard could sometimes work with bad headaches, but that didn't work. Ended up smoking some marijuana (have tried that before with headaches and it didn't help all that much) so I could hopefully get some sleep, which I did. Headache was gone when I got up this morning, but it's coming back now. I'll discuss with my doc next week, and maybe need to check in with my neurologist for a stronger migraine pill or a preventative if this keeps happening. And then again, possibly just migraines/headaches, but there does seem to be a trend developing.

Still, if I can get remission from the Entyvio (and I do think it's working already a little bit) then a couple days of headaches are something I can get through. Not happily (unless I smoke a lot of that MJ??? ;-D)
Posted 4/19/2017 2:56 AM (GMT 0)
There are some options for treating the migraines, you could always see a neurologist to try to get that managed. I think I'd be okay with doing what's necessary to keep them at bay if it kept the UC controlled. I am doing the same to try to keep my IUD. I don't want to take any meds daily, so I will take a pill if I get a headache. I don't want to give up on the IUD and accept daily pills if i can avoid it.
Posted 4/27/2017 2:40 AM (GMT 0)
THIRD loading dose today. Also saw the doctor and yes, the original medication order was submitted wrong. So ... it was written up as 4 loading doses at 0, 2, 4, and 6 weeks, maintenance at every 4 weeks. Turns out it should be as suggested: 3 loading doses at 0, 2, and 6 weeks, maintenance every 8 weeks.

So I had my 3rd dose 2 weeks early, which he says is no big deal. Well I'm definitely loaded up!!! I did call and check before I went with my dose today, problem is that the nurse I talked to at the doctor's office only read what was on file and didn't check with the doctor to make sure it had been written up wrong to begin with. Well, so now I wait 8 weeks for my next dose. I hope this doesn't cause an insurance problem.

I do think it's working. I've gained about 4 pounds. I'm down to 10 mg of prednisone and going to go down to 5 tomorrow, and then stay on that for 2 weeks and then no more. That will be the real test, I think. Plus waiting the 8 weeks for the next infusion. I have Uceris foam to keep me in check and also Canasa. If I have any problems, I will ask for the enemas, too. I've been eating some gluten --- had spaghetti last night and oh it tasted so good! Haven't really had spaghetti for over a year, and not much before that because it seemed like tomatoes bothered my diverticulitis. I'm not going to go overboard with it though -- moderation will be key.
Posted 4/27/2017 4:03 AM (GMT 0)
Flowers - I am so glad to hear entyvio has started to for you! I am in the process of getting mine covered by my health care. I sure hope I don't have as many problems as you came across! I just got my colonoscopy back and I have severe inflammation from my rectum to the sigmoid colon. I am hoping to hear back from my insurance soon so that I may get started on entyvio as soon as possible! please keep giving updates as I will be following your post very closely best of luck to you!
Posted 5/14/2017 7:49 PM (GMT 0)
Update: went down to 2.5 mg of prednisone every other day this week. Stopping completely now. I've been forgetting to do the uceris foam In the am for the last 5 days and only been using canasa every other night. I'm still doing good. One formed bm in the morning and having one most night after dinner also. A little bit of pain on passing. But I've also done a lot of cheating diet-wise without suffering ill consequences. Had a flour tortilla one day. Some tortilla chips and salsa. Yesterday I couldn't resist the dessert table. Oh yes and have been able to go to Starbucks again!!!.! (SO excited about that!) Coffee every morning now. So yes I think entyvio is leading me to remission. Time will still tell for sure.

I have been having a loot of headaches though. I see my neurologist next month so will discuss. But as bad as the headaches are I'd still rather have them than UC symptoms. I seem to get tired a lot too but that could be due to stopping pred (as could the headaches maybe?) So will see how that goes in the next couple of weeks.
Posted 5/14/2017 11:51 PM (GMT 0)
Congrats on getting off of oral pred. Glad you're feeling better. Sucks on the headaches though... i wouldn't call it pred-withdrawal though...
Posted 5/15/2017 2:02 AM (GMT 0)
Yeah I don't think its the pred either. But Dr thought it could be. They suck but I'll deal with them as they still beat the alternative. 😀

Post Edited (FlowersGal) : 5/14/2017 8:48:01 PM (GMT-6)

Posted 7/19/2017 2:50 AM (GMT 0)
So it's been a while since my last update. Had my 4th infusion about 4 weeks ago. Mainly doing very well. Two weeks ago I had a dull ache in my abdomen all day and again the next day. It left me feeling tired and yucky. At the time I'd been doing so well I was cutting back on the Uceris foam and nightly Canasa. I think I'd gone 2-3 nights without Canasa. So I stepped those back up and started the Uceris foam in the morning and Canasa at night. The pain shifted to my lower left and sharper for a few days and then went away. Haven't used the Uceris foam for about 4 days now but still doing Canasa nightly. I've had a headache since Sunday night. Forehead and top of head again, feeling very stuffed-up this morning (but no, it's not a cold, it's the headache). Even considered if it was a sinus headache/infection. I took a migraine pill Sunday night and when I woke the next day, still had the headache so I took another one and that worked. But then I woke up with it again this morning. Didn't want to take a nother pill since that would be 3 in only a day and a half, but it kept getting worse and the nausea was getting pretty bad, so I did. It went away, but I don't feel all that well. Wondering now if the headaches are related to Entyvio or possibly one of my other meds. I think my antidepressant can cause headaches and I think Apriso can too? If this sucker is back in the morning, I will call my neurologist and go in to see him. I saw him last month but hadn't been logging my headaches. Now I am. I don't get them every day, probably every 2 weeks, but whew these last few days have not been good. I can't function when I have them.

Anyway, Entyvio -- I'm a little worried that I'm not in complete remission yet. It's been 3 1/2 months, but I know they say to give it 6 months for full effects, and on the whole, I'm really doing well. I've had a little bit of urgency when I have to have a BM, but nothing like before. Down to 1, maybe 2 BMs a day, but they're soft and a little loose sometimes. The last few days have been more, but my headaches and the migraine meds tend to do that to me. Overall, I can live with my UC few symptoms here and there. Hoping I continue to improve after my next infusion and that the headaches aren't caused by Entyvio. No way to tell for sure, though.
Posted 7/19/2017 3:07 AM (GMT 0)
It sounds like you're doing very well FG! I wouldn't be worried that you aren't in "complete remission" yet--you are headed in the right direction and are currently in a "pseudo-remission" and that is great! Hope you can get rid of these headaches though.
Posted 7/19/2017 11:05 AM (GMT 0)
It took me a full year to reach a remission on remicade. You're doing well 3.5 months in, give it more time. Are the headaches gone that you mentioned in May?
Posted 7/20/2017 3:34 AM (GMT 0)
Went to the neurologist today because the headache was back. Guess what he put me on??? A quick and furious pred taper!!!! Who knew they used pred for headaches!! 120 mg today with a 10 mg taper per day so only 6 days total. And I thought 60 mg a day was a lot. I am flying high now! Now I know why I wasn't having quite as many headaches prior to this month -- because I was on pred anyway. If the headaches continue like this I might have to go on a preventative. Also will check to make sure its not a sinus infection. Reading back over my posts (one reason why I make these posts is to remind myself) I see the headaches are in the same spots since I started entyvio so am worrying about that. That would be a darned double-edged sword wouldn't it!!!! The thing that cures me also makes me so I'll I can barely function! Anyway something will work out and I sure will take a headache no matter how sick and miserable it makes me over my miserable UC symptoms. Time will tell! Overall I'm happy to be free of that tenesmus and pooping all day and night. But I have to confess I had a mini accident this morning as I was pulling my PJs down to sit on the toilet. But my migraine meds tend to give me diarrhea and I've been on a sh&t load of them the last few days.

ETA: the nurse said the pred was 10 mg but I just looked at the package and they're only 4 mg! So only 48 mg yesterday, not 120! Duh!

Thank you healing well forum for being here and letting me tell all my deep dirty secrets. Its so great knowing you all understand and aren't grossed out by TMI!

Post Edited (FlowersGal) : 7/20/2017 9:57:21 AM (GMT-6)

Posted 7/20/2017 3:54 AM (GMT 0)
Thanks plucky! Thinking of you also and hoping stelara is making your life a little less miserable!
Posted 11/12/2017 6:09 PM (GMT 0)
I'm about 4 months in on Entyvio, so I thought I'd post an update.

They put me on an 8 week prednisone taper when I started Entyvio to manage the transition and I was able to taper down faster than planned. After the second loading dose, being on Entyvio and 10 mg per day of prednisone was great but I eventually got off it completely.

Now at 4 months I feel like I'm in 90% remission. I'm going 2-3 times a day, almost always within 3-4 hours of waking up. Stools are firm, no gas, mucus, etc. I still get a little more urgency than I'd like, but I've had UC for so long I don't really remember what's normal. But there's no fear getting in the car anymore.

I think Humira didn't work for me because it wasn't tumor necrosis factor that was attacking my colon, it was my white cells:

https://www.entyviohcp.com/mechanism-of-action

Entyvio is the bomb. This is the best I've ever been since my dx in 2003. Not perfect is still awesome.
Posted 11/12/2017 8:37 PM (GMT 0)
Great to hear! Getting to 90% better is the hardest part. The rest will come in time.
Posted 11/13/2017 12:09 AM (GMT 0)
So glad to hear Entyvio is working for you, too! I'm 7 1/2 months in and 6 infusions. I'm in symptom remission, I guess I'd call it. Sometimes I still get urgency when I have to go, but it's getting more uncommon. Headaches and sinusitis are a problem, but I'll take that over tenesmus and pooping all day anytime!
Posted 11/13/2017 2:54 PM (GMT 0)

FlowersGal said...
Sometimes I still get urgency when I have to go, but it's getting more uncommon. Headaches and sinusitis are a problem, but I'll take that over tenesmus and pooping all day anytime!

That's great to hear that you're still improving. I've always had sinusitis, but it hasn't gotten any worse since I started Entyvio. Are they common side effects for Entyvio?
Posted 11/13/2017 5:34 PM (GMT 0)

Richard in NY said...
That's great to hear that you're still improving. I've always had sinusitis, but it hasn't gotten any worse since I started Entyvio. Are they common side effects for Entyvio?

I believe they are. Although, looking back, I think the sinusitis has been there for a while, it was very minor symptoms before, and now I'm getting headaches from it. And I've had migraines for years, too, but now I have them much more often than before.

I had a colonoscopy in Sept. and visually, my colon looked great, with no inflammation. Microscopically, it still showed an area of active colitis, which is probably what is causing my minor symptoms still. I expect further improvement, but even if this is as good as it gets, I'll take it, hands down. The pathology also showed some abnormal cells in one of the biopsied sites, so I get to have a repeat scoping in a few months, so we'll see how things are then.
Posted 11/13/2017 7:23 PM (GMT 0)
Great to hear you are improving on the Entyvio.
By the way I am doing well too, on my second infusion of Remicade. I agree it may not be perfect but it sure beats the uc symtoms hands down so far.
Posted 11/13/2017 10:55 PM (GMT 0)
good to hear you guys are improving/in remission.

i've had 4 infusions of Entyvio (3 loading & one regular). Hard to compare myself to you guys because my dr. has kept me off of all medication besides the Entyvio.

I had been greatly improving. urgency was down, bowels were starting to regain form, & i was going less. last week or so i've been feeling burning sensations and a sensation that i need to go, but when i try to go i generally cant.

has either of you felt that at any point while on Entyvio?
Posted 11/14/2017 1:23 AM (GMT 0)
How far out are you from your last infusion? I know I started to experience a few symptoms when I was 2 weeks away from infusion #5. #4 & 5 are tough because you wait the full 8 weeks. I think my symptoms were looser more frequent BMs with some cramping. By #6 I was good! I went off pred around #4.
Posted 11/14/2017 1:32 AM (GMT 0)
My next one is Dec 8th, so i have a little under month.

i have felt much better before last week. i typically go several times, like 4-5 times in the morning but only 1 of them is typically a BM. the rest is mucus and gas.

after that, i usually go once or twice the rest of the day.
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