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I'm starting vedolizumab (Entyvio) on the 2nd November

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Posted 11/5/2016 11:38 AM (GMT 0)
All the light we cannot see - ooh, my mum has that book! :p Not sure if she's read it yet, I'll ask her tomorrow. But I don't need to go to the library for that one, my mum can lend it to me.

The infusion place was actually a really nice place to read. Nicer than most cafes, 'cos it was more comfortable and quieter. I can read at home of course, but tend to get stuck on the laptop or tablet for hours - it's not good.

I've thought about joining a book club. Not seriously so far, but I think I'll look into it again and see if there's a group near me.
Posted 11/5/2016 7:22 PM (GMT 0)
Yeah, I think you'd like a book club....you might meet some nice people! Let me know how you like the books
Posted 11/5/2016 7:29 PM (GMT 0)
Congrats on the successful infusion! Glad you had nurses that were familiar, it always helps. How long did the entire infusion end up lasting?

I'm interested to hear more about your reading. I've always been a big scifi fan but I've mostly been reading nonfiction lately.
Posted 11/6/2016 5:29 AM (GMT 0)
So glad you got your first infusion done! You scared me there for a second when you said you'd been to the hospital and back 3 days in a row!

The infusion I had the time before my last one was like that. She didn't do the best of job putting it in, it hurt some and it beeped CONSTANTLY. She would come by and tell me to not move it around so much. Um, sorry I scratched my face! Not like I was jumping around the room. Then this time I have a big old bruise in my hand. She picked a small not so great vein even though I told her where I had a big juicy one. Frustrating.
Posted 11/6/2016 1:45 PM (GMT 0)
@gumby - I have to finish the book I'm reading first, which could take a while... >.>

@Labradorite - Vedolizumab is usually a half hour long infusion, but because mine was delayed it must have taken closer to an hour. I also had to hang around for two hours afterwards for post-obs. I won't always have to wait that long, but because it's a brand new drug to the staff they're being extra cautious with the loading doses.

Well, the last two sci-fi books I read consisted of one old book and one new one: I, Robot by Isaac Asimov and Station Eleven by Emily St. John Mandel. I also recently read What If by Randall Munroe, which I really enjoyed - even the answers to the questions I thought I had no interest in.

Being a bundle of laughs, I tend to gravitate towards apocalyptic and zombie themes. I'm all prepared for the zombie apocalypse: I've already picked the cupboard I'm going to hide in.

@Jen - Nah, it was just unfortunate I had to go 3 days in a row. My IBD nurse said if she'd known my infusion was the day after, she'd have seen me in the infusion centre instead.

If that happens again with you, ask for the cannula to be moved to another vein. You shouldn't have to put up with discomfort like that. To have a machine constantly beeping is also unfair on the other people having infusions, unless you were in your own private room. I have to say, my nurse was great: I didn't even have to ask her to change the cannula, she did it immediately. I was also asked beforehand which arm I would like to use. (I picked the left one, 'cos it's always been okay in the past.) If you would prefer to use a particular hand or arm, that should be your choice - you're the one who has to sit with it for hours.
Posted 11/6/2016 6:22 PM (GMT 0)
I started my Entyvio infusions on 11/2! :-) Just saying hi!
Posted 11/7/2016 1:03 PM (GMT 0)
Hi Heidi! :p

I hope Entyvio works for you. Keep us updated on how it goes.
Posted 11/7/2016 11:42 PM (GMT 0)
I got an instant headache at the start and it didn't go away for several days. I still struggle with a headache taking up about half my day now. I got that burst of energy that others have spoken of. I didn't sleep Wednesday night, and finally got an hour and a half the next day. My sinuses have been busy as well. I think it's calming down. I am SO looking forward to feeling some relief! It sounds like you had a good infusion!
Posted 11/8/2016 12:35 PM (GMT 0)
That sucks about the headache. There's a poster here who had bad headaches on Humira and said taking an antihistamine the night before the infusion made them go away. Perhaps you could try taking an antihistamine before your next infusion? Also, pretty obvious, but drink loads as well just in case the headache has anything to do with being dehydrated.

It wasn't obvious at first, but I think I got that burst of energy and difficulty in falling asleep as well. It officially ended this morning, where I had my usual titanic struggle to get out of a nice, warm bed and couldn't stop yawning when I did. On the other hand my vedo infusion coincided with running out of 6MP, so maybe it was stopping the 6MP which gave me more energy. I started the 6MP again last night as well, so I dunno. Have been wondering for a while whether the 6MP was making me more fatigued, tbh.

I won't run out of 6MP before my next infusion, so I'll see if I get that (relative) burst of energy and sleeplessness a second time. Good luck with your next infusion!
Posted 11/17/2016 12:13 PM (GMT 0)
Update: 2nd infusion (part 1)

It's still only noon, I'm not even at the hospital yet and already this day has sucked beyond belief. Instead of getting a good night's sleep, I spent half the night curled up in agony. I think I had a fever (no thermometer to test it though - I ought to get a new one). As well as the incredibly protracted waves of pain, I also felt sick as a dog and once or twice thought I was going to be sick. I popped two diclenofac, because the pain was so bad. Helped, but took absolutely ages to make a difference. I couldn't sleep, so I popped a zoplicone at some gash time like 7am - I dozed on and off from then until 11-ish.

I am never, ever ****ing eating cabbage again. I was at my parents' yesterday and had steak and kidney pudding with cabbage for dinner. My mum had cooked the cabbage 'til it was soft and, I dunno, I thought it would be all right. Especially with loads of salt and pepper added, 'cos I had a salt craving, and it was really tasty eaten that way.

I'm gonna have another cup of tea and try to decide whether I can manage solids. Leaving for the hospital in about 50 minutes.
Posted 11/17/2016 9:18 PM (GMT 0)
2nd infusion (part 2)

Well, I've had the infusion now. Everything went fine: there were no setbacks or hitches. I had a bland lunch of an egg mayo sandwich on white bread, a packet of hula hoops, and a carton of coconut water. The nurse got me a tea, which tasted suspiciously like very milky instant coffee, but I drank it.

Apart from the machine going off if you so much as move your arm by a fraction of a millimetre, I'm finding these sessions nice and relaxing. The actual infusion only lasts for half an hour: after that I just curled up in the armchair and read for two hours while a nurse occasionally did my obs. The nurses are all friendly too, so the place in general has a decent vibe.

The only downside was my stomach continuing to play up after every time I ate or drank something. It was nothing like last night: I could function through it. But yeah, I'm seriously hoping that this is only a very temporary reaction to something. I'm finally glad to be having the dummy pill cam first though (on the 5th December): originally just wanted to go straight into the test proper. Anyway, gonna keep my diet strictly low residue until this passes.

Edit: Think I have another fever this evening. Feel freezing, despite having had the heating on at full blast for two hours. Shivering and unable to get off the sofa until now. FML :-/

Post Edited (NiceCupOfTea) : 11/17/2016 4:46:47 PM (GMT-7)

Posted 11/18/2016 3:56 AM (GMT 0)
Hi:
I've just gotten approved for Entyvio too
I'm waiting for a bit before I start though.
I've been taking Cymzia injections for almost a year and have been sicker and sicker...adding more injections, up to 1 a week.
Last week, I'd had enough and I knew my approval was coming so I didn't do my last injection. Guess what, I feel much better. I think the cymzia was making me sick! Now I don't know what to do. Wait it out and see how long I last before I get sick, or better yet, wait it out and I don't get sick!
Tried and failed:6mp, remicade, Humira, ,Cymzia, off of Prednisone now 1 year.
Currently taking: methotrexate 25 mg, Prilosec, duloxitine 30 mg

I have vascular necrosis in my right hip, will have replacement in January. Caused from 3 years on prednisone!

Have extra-intestinal arthritis. I have trouble moving because of this.

I'm disgusted with options, I don't trust Entyvio will work
Posted 11/18/2016 12:02 PM (GMT 0)
Hi Trishke. It sounds like you've had about as much luck with the meds as I have :-/

It does sound like you were having a bad reaction to the Cimzia. Check with your GI to be on the safe side, but I doubt there's any harm in not taking your next shot. Unlike steroids, biologics can be stopped cold turkey.

I'm sorry about the vascular necrosis. There's a guy on here who's having surgery on his hip soon due to steroid-induced necrosis. I thought I had escaped from my time on pred without any long-term consequences, but now I'm not so sure. My teeth have already been affected by bone loss; dunno about any other bones in the body (yet).

I wish I could reassure you about Entyvio. The main thing is it's not an anti-TNF (which the other three biologics you have tried are), so it will at least be something genuinely different. Hopefully you will be a lot less likely to have a bad reaction to it as well.
Posted 11/18/2016 2:38 PM (GMT 0)
Hi NCOT,
Get a thermometer! You should be keeping track of fevers. I'm glad the infusion process is pleasant, I just hope the Entyvio is going to work. I started FODMAP and it completely stopped my D and actually sent me into constipation and needing laxatives, so I guess it is effective. But I have been having insane daily headaches. My blood work all looked perfect, so it is definitely IBS or something along those lines. The headaches didn't start till I started FODMAP which is so strange. I can't really figure it out! I hope your GI system settles soon
Posted 11/18/2016 5:18 PM (GMT 0)
Hi gumby.

Yeah, I'm going to order a thermometer this weekend. I don't worry about the occasional fever, but if they become regular, that's deffo not a good sign. Good job on the FODMAP diet! Now all you need to do is tinker with it until you get the right stool consistency - maybe have one high-FODMAP food item a day? :p As for the headaches, is there any chance you could be dehydrated? Doesn't seem very likely but if you have reduced your overall liquid intake (including the water content of solid foods), then it's a possibility.

I feel a lot better today. Took some paracetamol and codeine last night and sweated the fever out on the sofa. Had the best night's sleep I've had in ages. The only troubling thing was getting a bizarre pelvic pain on the left side, which had me doubled over in pain this morning. It faded, but didn't go away completely, so I can still feel it. Could be abdominal, could be gynaecological. Almost hoping it's the former, as I've never dealt with gynaecological problems before.

Anyhow, I'm going out tonight. Probs going to watch a local band, if the two of us can organise ourselves enough to get there. Laters :p
Posted 11/19/2016 12:23 AM (GMT 0)
My husband suggested that maybe my headaches are from the rice. I switched from Almond milk to rice milk and also have had rice pasta and Rice Krispies along with regular rice to replace the gluten. I've read about arsenic in rice so I'm wondering if it is toxic for me? Certainly it could explain the switch from D to C. So I'm going to eliminate rice and see what happens. I'm not thrilled about FODMAP and the holidays coming up. Hopefully I can add a few food groups soon, but first I have to get these headaches under control....they are really severe and driving me nuts.

Have a great time tonight. I'm so glad you are going out! What kink of music does the band play?
Posted 11/19/2016 1:41 AM (GMT 0)
Loud music >_>.

AKA blues rock. It's not the sort of thing I would have chosen to go and see myself, but after an initially grumpy start I did get into it and have a nice time. Sadly I then felt rubbish afterwards, but that was hardly the band's fault. More my body's fault, for being crap.

Are you going gluten-free as well as low-FODMAP? It does sound like you've had a bit of a rice overload there; stopping it is definitely worth a try. I hope it helps. Can you eat potatoes on a low-FODMAP diet? As a woman of Irish stock, my mum doesn't consider it a proper meal if it doesn't come with potatoes - she's not really a rice person.
Posted 11/19/2016 2:42 AM (GMT 0)
The FODMAP isn't strictly gluten-free, but avoids a lot of gluten based foods, and yes, thankfully I can have potatoes. I picked FODMAP because it didn't seem impossibly restrictive like the SCD and I also liked that the goal of it is to identify problem foods, and re-introduce foods that are not problematic, so you don't have to remain on the diet forever. I was about ready to ditch the diet because I think I feel worse with these headaches than before I started, but my hubby has convinced me to hang in there and try eliminating rice first. If you are curious, here's the list of allowed and disallowed foods: The book I have has a slightly different list...for example it doesn't allow cottage cheese or celery and they want you to make your own ketchup and BBQ sauce to eliminate garlic and onions. I hate the whole thing honestly, but I needed to try something other than what I've been doing:

http://www.ibsdiets.org/wp-content/uploads/2016/03/IBSDiets-FODMAP-chart.pdf
Posted 11/19/2016 3:09 AM (GMT 0)
Gumby--How long have you been on FODMAP? If it's less than 2 weeks, the headaches might be sugar/fructose withdrawal. I experienced that and then felt loads better once I was through the "detox".

Here's an article from Dr Weil on the arsenic in rice: http://www.drweil.com/diet-nutrition/food-safety/arsenic-in-rice/. That does sound like a lot of rice, so you might withdraw it completely too and see how you feel.

NCOT glad things are going well with entyvio, except for the lack of tea. :-)
Posted 11/19/2016 1:48 PM (GMT 0)
sparkleplenty.....thanks. It seems like there is a lot of allowed fruit on FODMAP so it still seems like I'm getting sugar?? But I did think of that. I'm not quitting yet, but yeah, I'm going to completely withdraw the rice and see what happens. Thanks.
Posted 11/19/2016 4:23 PM (GMT 0)
Are the headaches any better yet, gumby, or is it too early to tell? Never mind: just read your second post and it seems like you haven't started withdrawing rice yet.

Had a look at the list of foods with interest. Yeah, that wouldn't be an easy diet for me to follow. I might try it one day, but right now my eating habits are kind of erratic (it's gone 4pm and still had nothing to eat today for example). Such eating habits aren't compatible with strict diets - way way too often it's 5 or 6pm, or whatever, I'm utterly starving, and have absolutely nothing for dinner. Also, I eat over at my parents twice a week, which often includes lunch and dinner. On top of that, my food purchasing habits are heavily influenced by supermarket reductions - it pains me to pay full price for certain things, but sometimes I have no other choice.

So yeah. If the low-FODMAP was as easy to follow as the Fortisip diet (literally getting bottles out of a fridge a few times a day and drinking them), I'd be more inclined to give it a go. Anything which requires actual planning and foresight: not so much.
Posted 11/19/2016 9:05 PM (GMT 0)
NCOT, just wanted to pop in and say how happy I am the first one went well and that it sucks that you're feeling rotten right now. You may want to give the IBD nurses a call just to check in. You're sounding pretty upbeat though in spite of feeling poorly!
Posted 11/21/2016 2:12 AM (GMT 0)
Thanks scifigal.

Think the second infusion of vedo has helped a bit. I almost seemed to be sliding towards a relapse last week; while things aren't perfect, the downward slide has at least stopped. No more fevers either, as far as I can tell. (But still got to buy a thermometer.)

Hope you're feeling better... <_<.
Posted 12/17/2016 2:17 PM (GMT 0)
3rd infusion update

Had my 3rd infusion two days ago, folks.

I got a right shock when I phoned up on the Wednesday to confirm I would be coming in the next day for my infusion: apparently it was booked in for Wednesday. My previous two infusions had been on Thursdays, and I just assumed this one would be! The woman was very nice about it; she managed to get my infusion moved to Thursday and I didn't have to cancel my planned trip to London with my mum and her friend. (Not that enjoyable in the end; the crowds and the noise were exhausting and all 3 of us were frazzled from it.)

Went in the next morning to have my infusion. It was a proper nice experience, like being in a luxury hotel minus the "luxury" part. They've got new remote-controlled chairs, which work much like hospital beds do: you can raise/lower both ends. I raised the lower end and curled up with a couple of pillows. During the infusion itself I tried to remain as still as a sphinx, but the darn beeper still kept on going off. Apparently because the infusion is so fast (30 minutes), it increases the pressure of the liquid going into your vein, making the beeper more prone to going off. I don't remember having this problem with the 2-hour Remicade infusions.

This time I got enough cups of tea (three in total), and they were actually tea, not coffee in disguise. I also got a free lunch! Either my hospital have upped their game a bit, or the day care centre has better lunches than on the wards. I had an egg sandwich, vanilla yogurt, banana and a packet of Walker's ready salted crisps. On the wards all you would get is the egg sandwich and a minging yogurt - the yogurt I had was actually really nice. Creamy and vanilla-ery-tasting.

While I was at the hospital, I decided I may as well do my stool sample for the faecal calprotectin test as well (this was ordered in advance weeks ago). A nurse kindly got me a bedpan, which I went into. I then put the bedpan on the floor and bent over to scoop up some of the stool with the absolutely titchy spoon that you are given. While I was bending over, I felt another urge. As I was sitting on the toilet I didn't think much of it, and let go. When I got up, I saw that the stool had gone all over the back of the toilet seat and lid, but not in the actual bowl - oops :-/

Cue lots of running back and forth with wet paper towels trying to clean it up. I left it as clean as I found it, but because I'd had a thai meal the night before, my stool smelt of the thai food I had eaten. And by this time the smell had fully permeated the cubicle. Whoever went after me was probably wondering if somebody had been eating a thai curry whilst sat on the toilet having a poop.

So yeah. Apart from that, and one minor hiccup where my pulse rate read 147 (the rest of the time it was just under 60), the infusion went well. Had to stay for two hours afterwards (from now on I will only have to stay for an hour afterwards), but I didn't mind at all. I just read and had my free lunch. I like that place. The nurses are all really nice and the banter helps put you at your ease.

Wish I could be more optimistic about the Entyvio, but, going from symptoms alone, it doesn't seem to be making much difference. I had a fairly bad night last night (up and down to the toilet a few times), then this morning I had extreme urgency - which I only just managed to hold in - followed by blood on the toilet paper and in the bowl. I will know more after the pill cam and calprotectin results I guess.
Posted 12/17/2016 2:42 PM (GMT 0)

soynomore said...
is dozing frowned upon during infusion sessions ?

maybe try doing your dozing at the car park instead !

good luck with the whole shebang :smile:

I always nap during my Remicade infusions. It's very relaxing for me.
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