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12-31-2014, 05:15 PM   #301
aleshanicole
 
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The joint pain is unbearable. The RN told me it should dissipate within 72 hours of the infusion but it is all the time now. I'm not sure what to do. She said no aleve. Anyone else taking something for joint pain? Just had my third infusion and the Crohn's has improved, but this joint pain is so bad I'm on crutches.
I am taking norco for the joint pain. It is really bad for me as well.
01-01-2015, 09:45 AM   #302
isabelle
 
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Memmyy29: half a tramadol plus two extra strength tylenol helps with the pain. my pain has lasted much longer than 72 hours, it seems to last the whole 8 weeks but it gets slowly better over time. by the end of my last eight weeks, two tylenol were doing the trick. after my most recent infusion a week ago, the tramadol and tylenol are doing an okay job...not great but okay.

mugsymagoos: my doc has good things to say about Stelara for Crohn's. unfortunately it's not FDA approved for Crohn's which means a fight with the insurance company in order to get them to cover it.
01-01-2015, 09:56 AM   #303
Memmy29
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My doc is telling me to take prednisone. I can't take other pain stuff because I'm trying to get pregnant. This is all so frustrating hope the pain gets better for you all.
01-03-2015, 01:07 PM   #304
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Amy I was sorry to hear the side effects you reported. I certainly hope things are better now. Bloating and gas are issues my husband has with this disease. He is getting his 3rd infusion this week and I certainly hope it is not going to get worse. Please report your current situation. Your help will be appreciated.
I've had crohn's for 15 years & ileostomy for 4 & have tried every drug available, without much success. Right now I'm taking 6 MP & on Cimzia for the 2nd time. I also have a gastro Dr at Mayo in Minnesota & wonderful surgeon. They have saved my life twice when Chicago didn't have a clue what to do. I'm still recovering from my 19th surgery & if I need more intestine removed, I'll have to get permanent feeding tube. Dr's tell me I'm running out of options, but remain hopeful. I need to find a local GI, cause Mayo says I need a whole team close & far & not driving to Mayo's in the winter. Anyone know of a good one that can work with severe Crohn's with lots of complications? I took prednisone for 10 years, it got me out of surgery for awhile, but did permanent damage. So think twice before taking it, made me feel great but wasn't worth all the damage & coming off is so horrible.
01-03-2015, 02:55 PM   #305
Memmy29
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Just an update: I'm taking 10 mg a day of prednisone now and it seems to be making a big difference. Hopefully it'll get the inflammation under control until the Entyvio kicks in. Fingers crossed for all if you too.
01-03-2015, 03:00 PM   #306
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I've had 5 infusions so far (maybe 6?). I've been lucky enough not to experience the side effects that plague many on this thread. But I do notice that my BMs tend to have a lot more volume, and I love only go 3-4 times a day. I also become wicked gassy, but that only upsets my wife. She does not appreciate a good Dutch Oven.
01-08-2015, 02:06 PM   #307
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Has anyone experienced issues right before their next infusion? Number 4 is Tuesday the 13th but since Monday the 5th I've been beyond sick. Dr. is considering adding a second medication because of the increased symptoms. I'm also experiencing the same symptoms that I get after the infusion, extreme fatigue, horrible headaches, and joint pain. Anyone have any suggestions on what could be going on?
01-08-2015, 02:14 PM   #308
isabelle
 
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CLCH87, you're still early yet... The Entyvio probably hasn't kicked in fully. I was very up and down before my 14 week mark. My doctor has reminded me again and again that this is a slow acting drug. Patients who tolerate it do better and better over the course of their first year. A second med might be a good idea to get you through. I take oral methotrexate and it's been a life saver. Now tapering off the MTX because the entyvio has started working pretty well. Good luck and hang in there.
01-08-2015, 03:57 PM   #309
Memmy29
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I just had my third infusion and belly pain is getting better. Now my joints are the main problem. I also developed Iritis today.
01-13-2015, 04:50 PM   #310
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I think I should get an award for my infusion this week. Just starting after 9 attempts of getting a line in. We finally got one started in my foot.
01-13-2015, 05:27 PM   #311
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IV in the foot? Yikes! I thought 3 attempts was a bad day. Were you dehydrated?
01-13-2015, 06:13 PM   #312
CLCH87
 
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IV in the foot? Yikes! I thought 3 attempts was a bad day. Were you dehydrated?
I don't see how I could have been, I've been drinking non-stop because I have small veins as it is. Every line they got in became infiltrated. Probably the most painful thing, and it was 3 attempts in my feet alone.
01-15-2015, 03:32 PM   #313
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I haven't been here in awhile...

My 5th infusion is this coming Monday. I still have good days and bad days, though I am doing pretty well now that I've thrown in the towel and am taking Uceris every day (I had been trying to maintain at every other day or so, and had tried to come off of it as well). I'm definitely better on Uceris + Entyvio than I was on Uceris alone, so I assume it is doing something...

I saw my gastro at the beginning of the month, and the current opinion amongst IBD specialists is that this stuff can take 6-7 months (you read that right, MONTHS) before seeing a response (and in some cases, up to 9 months). That's response, not remission. I was advised to be patient. I continue to have much better energy levels, which is helping to keep me encouraged.

However, I got sick a week before my 4th infusion, and 4 weeks after that, which has us concerned that I may be one of the folks who need infusions more frequently (there was a subset of patients in the trials who improved, but got sick when placed on an every-eight-weeks dosing schedule - they got better when given Entyvio every four weeks). We're sticking with the schedule for now, but if I have another setback at 4-5 weeks after the next infusion, my doctor is going to petition my insurance for more frequent dosing (I have a feeling that it will be denied - I haven't seen many US folks succeed in this). In the meantime, I'm going to just stay on Uceris...I was probably pushing it when trying to take it less frequently/taper down (I know of another person whose gastro told her not to even think about coming off Uceris until she had been on Entyvio for six months).

As for side effects, I still only experience fatigue for a day or two starting two days after the infusion - though it didn't seem as bad after the last one, so perhaps I am acclimating.

I hope everyone is hanging in there...
01-15-2015, 04:20 PM   #314
duh panda
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Glad things are improving for you Landshark! Nice to hear from you on here.

My 4th infusion will be Feb. 17th, so a ways behind you but I've continued to notice really positive improvements and the rougher days seem to be more predictable based on the medication schedule I'm currently on. Rough days tend to involve higher fatigue/ exhaustion levels rather then searing pain, etc. Undeniable improvement, hands down.

I've been feeling much better since beginning 25mg MTX injections in conjunction with Entyvio while working to get off of Prednisone. Been holding at 10mg while waiting on the MTX to build up in my system and will probably start working on tapering that final 10 in the upcoming weeks.

Following your 4th infusion were you sick from increased flare or from an infection or secondary illness? I struggled with an infection following the second infusion and was discouraged since it was difficult to discern whether the Entyvio wasn't doing anything, or whether something else was going on since I'd been seeing a bit more energy even after the first infusion (although it is easy to recognize the most minor improvements when feeling such an epic level of terrible). Seemed like all tanked following the second, or simply wasn't holding. However, the 3rd left me feeling more like I recognized following the first - ever improving energy levels, generally lowered pain, increased appetite, etc. I hope that your being ill mid-schedule isn't a regular occurrence as you keep going with the Entyvio.

It is certainly frustrating at times to need additional medications, but maybe with enough time - like you pointed out it is more along the line of months to start seeing strong response/ potential remission - I'll be able to taper off the MTX and you your Uceris!

Wishing you all the best as you go in for your 5th infusion, I hope the period of increased wellness continues to improve for you.
01-16-2015, 03:19 AM   #315
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Been awhile since I've updated my Entyvio experiences. Going in for infusion #5 tomorrow (Friday January 16, 2015). I'm still on Prednisone at attempted slowly tapering doses (currently 30mg) in addition to Entyvio. I seem to get the fatigue for a few days following the infusion, but not completely debilitating. Had a setback during the holidays (was down to 15 mg of Pred) and started passing a lot of blood, so I kicked up the Pred to 50mg and it stopped. I've certainly been putting on some weight though. Bm's are in the 3 to 6/day range, but not consistent. A day here and there even have had zero! It seems like I get bloated after eating at times as well. Just had bloodwork done and things seem to be settling into the "normal" range of things. Colonoscopy is scheduled for Jan 29th-lets hope its some good news! I'll let you know what the consensus is.
01-16-2015, 08:46 PM   #316
aleshanicole
 
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After going to Cleveland Clinic this week i am going off the entyvio and back to remicade. Wish you all the best of luck
01-22-2015, 07:27 PM   #317
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Hi Everyone,

I started in late Sept and i think i have hit a plateau with moderate success at best. im thinking of coming off and going back to humira due to the side effects (extreme fatigue and bloating)

1. How long did it take you guys to plateau?
2. Are you experiencing the same side effects (extreme fatigue and bloating) as i am? and if so how are you dealing with it

many thanks
01-22-2015, 11:38 PM   #318
duh panda
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Hey Uberreem,

I also started late september and felt like i hit a plateau after this last infusion. Felt awesome up until about 2 weeks ago then back to seeing increase in blood, increase in pain (although in a different area then I've experienced this last 2 years), not the bloating like earlier at the start of Entyvio and fatigue has always been a constant although exhaustion initially lessened a bit and has been pretty much holding there ever since.

Anyways, just met with my GI today. Will get an MRI in the upcoming weeks since I had a scope in Nov. that did show less inflammation in large bowel. Consensus was essentially that Entyvio is really really really slow working. Compared to Remicade for ex. where by the 3rd infusion most are pretty much ready to take on the world again, Entyvio's more like that around the 1 year mark. Generally speaking.

How I'm taking this: for me, the improvements since starting Entyvio are worth continuing to see what will happen. Any side effects/ recent increases in symptoms and discomfort aren't enough to really deter me compared to what I was experiencing before. Since it takes so long and I'm already in this far I figure what's another 5-6 months? If it's not a huge life-changing difference I'll consider other possibilities after giving the full wait. I just don't want to try returning to biologics I moved away from for reasons like reduced response or repeating infections, run up against the same issues, and be back to prednisone, Entyvio or a combo of minimally responsive meds. waiting for something new to come out.
01-23-2015, 12:40 PM   #319
uberreem
 
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hi duh panda

thank you so much for your reply, i too had a point where blood returned and things got a little worse. Since we both started the same time we should ping each other periodically to guage progress.

my gi also convinced me to stay on so i guess for the time being ill tough it out

id love to hear from the others on this one
01-23-2015, 12:56 PM   #320
Memmy29
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I started in late November and was in crisis then. I think I'm really getting some relief finally. My gut is great. Going once a day like a healthy person! CRP is still high though - 2.7. My joints are the only issue still. Taking 5 mg of prednisone and that keeps it under control.
01-25-2015, 10:04 PM   #321
Malarkey
 
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http://www.biospace.com/News/judge-s...-takeda/351749

http://ibdnewstoday.com/2015/01/09/n...atients-in-uk/

Has made my life pretty shitty on top of the usual shitty, no pun intended.

oh yeah and this : http://kansascity.legalexaminer.com/...os-litigation/
01-28-2015, 01:59 PM   #322
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Just had my 5th infusion this morning and feel good. Slightly tired and will nap later, but over all I am pleased with Entyvio. Even the prior weeks leading up to #5 infusion I had felt as good as I did two weeks after an infusion. Yes there has been discomfort with bloating and joint pain but these have subsided. Has the joint pain completely gone away?! No. But I have Crohn's and there will always be issues with joint pain-inflammation and the bloating. My point here is that Entyvio isn't the cure drug, so the symptoms of Crohn's may always be there but less inflamed and each one of us has to decide what that level of toleration of symptoms one can handle. I do feel that I need and want to stay on the 6mp while taking Entyvio. (Having fistulas I just don't want to mess around without 6mp) I still have days where I do feel fatigue but it doesn't last nearly as long as it would on previous med regimens. I have more consistent energy levels that I havent had in a very long time and actually have a healthier glow to my complexion than before. I hope everyone can get to the first 3 - 4 infusions without dispair. These were a rough few months. But it feels worth it so far.
01-28-2015, 02:15 PM   #323
LandShark
 
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I would agree, Kisleeh. I had my fifth infusion last Monday. I am actually doing pretty well. Not normal, but my energy levels are great (I'm getting up at 5:30am to do yoga during the work week - and managing to stay awake until bedtime...this is a minor miracle). Frequency is dropping to a level I'm happy with, urgency is going away too. My appetite has shot through the roof (I am fine with this, I really need to gain some weight, though I'll confess that I will be somewhat aggravated if I outgrow my clothes!). I know some of this is from the Uceris I'm taking (at least the gut effects - it has never done much for appetite or energy), but I know at least some of this is from Entyvio. Just have to stay patient...
02-02-2015, 10:59 PM   #324
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Hi everyone
Getting ready to discuss Entyvio with my GI
I have been on humira for several months and was wondering, I have read that you shouldn't be on humira and entyvio at the same time but what about waiting for the humira to get out of your system? My GI wants to start Entyvio next week and my last dose of humira was Wednesday. I have already gotten shingles as well as a parasite that I am trying to get rid of, so I am a little concerned about the increased risk of infection with the humira still in my system. I know that taking any of these meds with an infection isn't good , but my GI said after a scope that by the looks of it, I have to go with the humira.
Does anyone know if you have to wait?
My GI said will check into it, but then called to say wants to start next week and I didn't ask.
Side effects seem scary to me ! But I am tired of this --6 months with a Cd flare.
02-03-2015, 12:04 AM   #325
duh panda
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Hey Kate, sounds like a concern to bring up with your doc. Call your GI back and get the answers you want/ need before moving forward. After all, it's your body and it sounds like you're dealing with a lot so there are several factors to consider. Can be easy to jump to gun wanting a flare to just end already but moving forward with any doubts can be just as worrisome.

For what it's worth my understanding is that the idea of being as far out from the last infusion of a TNF blocker has more to do with potential interaction then additional compromising of the immune system since the TNF blockers+Entyvio combos weren't tested in trial.

The way it was explained to me when adding Methotrexate on top of already using prednisone and Entyvio regarding immune modulators/ suppressors was that once your immune system is tanked that's how it is. Basically, adding more to the mix may drop it some but not significantly enough where it would outweigh the possible benefits.
02-03-2015, 08:07 AM   #326
sully1102
 
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Kate - my doctor had me do a 10 day break before starting Entyvio.
02-03-2015, 08:16 AM   #327
Kate D
 
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Thanks guys- I see her today and will get some more info. She did tell me that you have to take methotrexate with it to get it to work and I didn't t see that anywhere in the literature. I did read on this forum that methotrexate helps block the antibodies.
Thanks for your responses. Will keep you posted.
02-03-2015, 02:17 PM   #328
Robrich
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I added MTX to Entyvio as the ENTYVIO alone wasn't working well. Adding the MTX has helped.
__________________
DX. Crohns 50 yrs. with fistulas for 20 years until remicade
Meds: MTX,ENTYVIO 9/14' augmentin,
pred. 10mg.
probiotics
d3, calcium, k2' magnesium, resveratrol,
Turmeric,paleo, bone broths
Past: humira no response after 6 mos., remicade amazing for 10 years then stopped working.
Entocort
6mp, Imuran never helped nasty side effects liver problems, caught pneumonia
Asacol, rowasa no response
Flagyl worked well but got PN cipro same.
02-03-2015, 02:55 PM   #329
Kate D
 
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Hi-
I saw my GI today I guess between now and the last time I talked to her about the entyvio, she did some research/ talking with colleagues and the drug rep. She changed her mind about the methotrexate. She said she heard that you have a 4 % chance of developing antibodies so why use the methotrexate. Robrich- I guess you are in the 4%? She did say to continue the humira. Schedule wise, I would take it tomorrow but not sure if I will.
Does anyone else feel like a guinea pig? I'm not sure I like this feeling.
02-03-2015, 03:26 PM   #330
Robrich
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Kate d actually it wasn't about the antibodies for me it was about needing more immune suppression as my body was overpowering the Entyvio. It's in the same thinking as combination therapy using immune suppressants with a biologic. Sometimes it helps. You don't know until you try and I am running out of options. I did 6 mp with remicade it worked well but I had jaundice and other liver problems so stopped the 6 mp but the remicade worked wonders for many years. Now that my body defeated remicade it was beating everything we threw at it e.g. Humira weekly. This now seems to be working but slowly.
Good luck to you
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