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- Manchester, NH
Just got my the invoice from my first few rounds of Entyvio. I was expecting getting hit with $4,000 in charges.
May need to go back to Humira.
May need to go back to Humira.
Have you enrolled in Entyvio Connect? Manufacturer's program to help with out of pocket costs.Just got my the invoice from my first few rounds of Entyvio. I was expecting getting hit with $4,000 in charges.
May need to go back to Humira.
So good to know. I had trouble making to 8 weeks with Remicade and it has been on my mind whether I will be the same with EntyvioEntyvio now approved for every 4 weeks for those who's response stopped on the 8 week regimen.
http://www.medicalnewstoday.com/releases/283466.php
Just had my 2nd infusion. Seems to be helping. definitely feeling better overall more energy no fatigue or other issues. The proof will be when I start coming off the 30 mg/d pred. And the fistula heals up. But so far my esr is down from 30 to 15 so that's good.
One of my earliest symptom relief starting Entyvio was my continuous gum soreness/inflammation on my right side. The redness and swelling was gone after my 2nd infusion. My indicator whether I was beginning to flare was my right side of face would get that sensitive, tingling hurt and I would get the mouth ulcers. Even when I wasn't flaring I would never let the dental hygienist floss my teeth I was that sensitive. I also keep Valtrex handy when I get the mouth ulcers, especially when I can feel them coming on, whether inside or outside of mouth. It helps them from getting out of hand and to heal. Hang in there. I hope you find some relief soon.Hi, I wanted to see if anybody has had any side effects associated with Entyvio. I had my first infusion done Monday morning 10/6/14 and noticed the next morning i woke up with extreme joint pain in my R shoulder, as well as my R pelvis. Today I am having very painful joint pain in my neck as well as a soreness feeling in both sides of my cheek bones. Has any body had these symptoms? I have a hunch on what is causing this joint pain, because 2 weeks prior to having the entyvio I had the same type of joint pain in my neck and back, so bad i could barely turn my neck. Almost went and bought a soft c-collar to secure my neck from turning. My hunch is being off my remicade for 5 weeks now is causing it. I normally would get my infusion of remicade at the 3 week mark because of having a flare up. I know that is way way to soon but i couldn't take the pain of mouth ulcers.
My neck sounds like yours, it is completely locked up. I too had came off the remicade before the entyvio, I have been on it since july and I think I may be failing this med too, so if you find any relief me know.Hi, I wanted to see if anybody has had any side effects associated with Entyvio. I had my first infusion done Monday morning 10/6/14 and noticed the next morning i woke up with extreme joint pain in my R shoulder, as well as my R pelvis. Today I am having very painful joint pain in my neck as well as a soreness feeling in both sides of my cheek bones. Has any body had these symptoms? I have a hunch on what is causing this joint pain, because 2 weeks prior to having the entyvio I had the same type of joint pain in my neck and back, so bad i could barely turn my neck. Almost went and bought a soft c-collar to secure my neck from turning. My hunch is being off my remicade for 5 weeks now is causing it. I normally would get my infusion of remicade at the 3 week mark because of having a flare up. I know that is way way to soon but i couldn't take the pain of mouth ulcers.
I didn't start Entyvio that long ago (go in for 3rd infusion on the 28th) but was feeling noticeably better within a week of the 1st, and since the 2nd I've only noticed it get better and better. I started weight training and incorporating yoga back into my days just before my 2nd infusion; which combined with a diet plan I'm hitting my 2lb/ week gaining goals and am up 10lbs. from my lowest weight just before starting Entyvio - which just happens to be the highest weight I've been able to hit/ maintain in a year and a half.I go in for my 4th infusion next week, and I have to say that I've really started to see great results. My stools are well-formed everyday, my appetite has returned, and I'm dying to get back into the gym.
Anyone else that started in July/August feeling the same?
The couple days before my second and now 3rd infusion I also feel a general burning/ inflamed feeling throughout my entire gut.This past week I've noticed some abdominal pain that is not characteristic of what I usually have- it's more of an all over burning as opposed to being more intense, crampy, and focussed oin the lower right abdomen. The weirdest thing is that despite the pain, im hungry!!! I am 20 pounds underweight, so this is different. It could easily be the budesonide ( which has lost effectiveness, for the most part), but I'm wondering if anyone else has had a similar experience?
I can echo the abdominal pain observation. For about the first month on entyvio I had it pretty regularly. But hang tight --for me not only did it go away, I just had a flex sig and we observed reduction in inflammation at my anastamosis site (where my problems always occur). There was some scarring brought on by the healing process but we dilated the stricture and the prognosis is FAR better than before entyvio. It just takes forever to start working. Now if only we could figure out my bacterial overgrowth (but that's another post for another thread).Interesting- the nurses at my infusion center did say that abdominal pain is the one side effect that they've seen consistently. I hope it is a sign of healing, as you said.
Now if only we could figure out my bacterial overgrowth (but that's another post for another thread).
hope everyone is doing well
Hi all--So, how is everyone doing? I know that a fair number of us are further along in treatment (3-4+ infusions done).
I hope that everyone is well, or getting there.
Hi If you dont mind me asking what herbal remedies hae are you on I am looking for a better pain remedy nothing really seems to work and all my gi wants to do is send me to a pain specialist and I am afraid to go and be seen in a drug clinic I dont know just my crazy fear, but if you know of anything I would be interested to find something other thanca pain clinic.Thanks for your reply! So, we have some minor consensus on hunger and all over burning- interesting, bc I've noticed the burning more mid day as well, though yesterday it persisted into evening.. It also seems to follow eating which I keep doing! I also take an herbal pain remedy, so I do notice it more when that wears off... Agreed- burning is way better than intense cramping!
I dont know if I would try to get pregnant on this drug, maybe because of pml even though it is low would scare me. I wanted to get pregnant too but I am taking time out for now till I recover some. But good luck if you do I had no luck, but I am lucy I have one amazing child lexi and two nieces who are just like my daughters and one says she is lol, so I am lucky but I know the struggle all too well and it can he heart retching, so empty. Hope this helps no judgementI finally took the leap and am getting my first Entyvio infusion next Friday. Took my last Cimzia injection today. I am currently going through fertility treatment too, so I hope Entyvio is safe for pregnancy. I don't think I'll be able to get pregnant though until this inflammation gets under control.
Anyone freaked out about the risk of PML? I know it's supposed to be lower than Tysabri, but I'm still really freaked out. Anyone have any words of wisdom from their doctor they can pass on?
Hope everyone gets relief!
Hi If you dont mind me asking what herbal remedies hae are you on I am looking for a better pain remedy nothing really seems to work and all my gi wants to do is send me to a pain specialist and I am afraid to go and be seen in a drug clinic I dont know just my crazy fear, but if you know of anything I would be interested to find something other thanca pain clinic.
thanks in advance.
I had reactions to two of the three, Remicade (allergic), Cimzia, and Entyvio (anaphylactic). My doctor was able to premedicate me for both the Remicade and Entyvio. I still had anaphylactic shock with Remicade but not Entyvio. I would stress the importance of trying premedication like benadryl and steroids to avoid that happening. I'm able to handle the Entyvio with the mix in my IV before they start the medication.Yesterday I started my first dose of Cimzia and had an allergic reaction and ended up in the hospital. I tried Humira and didn't feel well off of that. A friend suggested trying to Entyvio but after my reaction yesterday, I'm scared and nervous to start a new drug. I am also trying to find something that is safe for when I decide to get pregnant. Cimzia and Entyvio are both class B which is safe for pregnancy. I have had crohns for almost 20 years and have been able to maintain it pretty well until recently.
Any suggestions?
Been taking methotrexate since early May, after Cimzia failed for me (also Humira, Remicade), before Entyvio was approved, 25mg injection weekly. Was tired after the first couple of methotrexate injections, but now have no issues with it.And the lucky drug of choice is... Methotrexate. Here's to hoping it works well with Entyvio!
Anyone here on it?
Stick it out. It won't be easy but it gets better. Second into third is rough but your energy will start to return. Get plenty of rest, drink LOTS of fluids, and eat as well as you can. Seems lasting abdominal pain, joint pain, is common but does relent. (Next week is number 4 infusion and I was scared I wouldn't hold the full 8weeks but I have so far. I wouldnt make it this far on other biologicals)I'm due for my second infusion Wednesday. I came off of Cimzia to switch to this...and I feel awful. I wasn't doing great on Cimzia to begin with, but it's evident now how much it was holding me together. I am having abdominal pain throughout the day, extreme fatigue and tons of running to the bathroom.
People with Crohn's who have gotten relief from Vedo...how long should I wait before I write it off? My doctor says 12 weeks...
Thank for the pep talk. This is rough.Stick it out. It won't be easy but it gets better. Second into third is rough but your energy will start to return. Get plenty of rest, drink LOTS of fluids, and eat as well as you can. Seems lasting abdominal pain, joint pain, is common but does relent. (Next week is number 4 infusion and I was scared I wouldn't hold the full 8weeks but I have so far. I wouldnt make it this far on other biologicals)
My husband has received 2 infusions of Entyvio and is scheduled for #3 this Thursday. I was just wondering how you are doing on this medication. Sure hope it has helped and the results you reported here have continued. This is a vicious disease. :ysmile::ysmile:I appreciate the feedback. It is Sunday and I am still so wiped out. The only thing I have noticed is that I have less joint pain; I think humira might have been the source of most of my pain. My bowels are a mess though- I wasn't expecting to be so sick. Hugs to you. I hope you have continued improvement.
I have seen your post sure hope you are continuing to get decent results. My husband is scheduled for #3 infusion this Thursday 12/18 and would love to know if you continue to receive good results.:ysmile:SKCARR, I plan to get my flu shot this year. I've been on just about everything for Crohn's, and I have always been advised to get the vaccine - you do not want influenza while immunocompromised. However, the flumist is not an option for us, as it's a live vaccine (general rule of thumb: killed vaccines are usually okay, live vaccines are not). They haven't come around with the flu shot at my place of employment yet, but I'll let you know how I fare once they do (I get it for free here)...
I had my third infusion on Tuesday. To be honest, I can't really say how I'm doing. Both my gastro's nurse (had an appointment before the infusion) and the infusion nurse said that I'm looking better (people at work have also noted it), and prior to this infusion, I was having an easier time getting out of bed in the mornings and having more energy throughout the day (that started about a week ago), but I can't say I'm seeing an improvement in my gut (I was for awhile, early on, but then went off LDN and things have been up and down since). However, through it all, I'm still making it through the night without any bathroom trips, which is (for me) a very good sign. As for side effects, I'm still getting the fatigue/wobbly feeling two days post-infusion, but I can manage it. I hope to see a change soon, but I know that this can take some time (and I know my gut has a lot of healing to do)...I'm encouraged seeing that some of us are starting to see results.
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.Hello. I haven't posted here before but have been reading this forum since starting Entyvio. I am 40 years old and have had crohn's for 24 years. I have 180 cm of bowel left and Entyvio is my last hope, as I have been on all the other drugs and had some bad reactions to the TNF's and am no longer able to take those. I have also tried many, many things and spent lots of money, trying alternative treatments.
I had my 3rd Entyvio infusion on this past Friday. I am on Prednisone, 30 mg and Imuran, 100 mg. Since Friday, I have had horrible back aches and really bad abdominal pain. Everytime I eat, my stomach seems to fill up so quickly and I feel very full and my stomach becomes distended. This is followed by gas pain and lots of bloating. :0(
We live in Illinois and I have a local GI here, though he is not much help and I would love to change Dr.s. However, I am also seen by a terrific Dr at Mayo Clinic in Minnesota, who is simply terrific so we travel up there for appointments, tests, etc. I have my Dr. here only because someone local has to order the infusion of the Entyvio.
Last week, I noticed some balance problems and have been having major mood swings and brain fog. I have noticed this since starting the Entyvio and it seems to be getting progressively worse. However, I am also on the prednisone so it is hard to tell what med is causing which symptoms. I went to a Dr. last week because of my balance issues and mood swings and he immediately decided (after only reading about Entyvio right before he walked into see me), that I could have PML. I was referred to the local E.R. and went the next day and had an MRI of my brain. Again, the Dr.'s there also knew nothing about the Entyvio....I even had to spell it and tell them about it. My MRI showed no PML, according to the ER Doctor but Mayo saw a copy of it and said that there are some other things that they would like to invstigate further, but assured me that they did not think it was PML either. My Dr. at Mayo told my husband and I when we were there for tests this past August that she feels that Entyvio is safer than Remicade, in her opinion and that there is not a "real" risk of PML. We trust her, completely, which is why I decided to take the drug.
But now, this pain is horrible.....I think that I would rather be going to the restroom 15 plus times a day again, like I was last week. The change has been very quick and now the isssue is that I am passing small amounts (pieces, if you will), of formed stool. I also have a slight fever.
During my visit in August, Mayo saw that I have more narrowing and they told me that surgery was probably in my near future but with the small amount of bowel that I have, that we should wait until it was completely necessary and the hope was that the Entyvio would help and I wouldn't need surgery.
It is strange to me, but my gas and bloating symptoms have gotten much worse since I started the Entyvio. It is almost like the Entyvio has caused more inflammation to occur......though I am not an expert. I just know that I feel progressively worse, after each dose. I am frustrated and feeling quite hopeless. I was wondering if there were others who may have experienced this and what your thoughts were. I am not sure what they next plan would be for me. I am nervous about having another surgery, even though I have a terrific surgeon at Mayo and he would be doing strictureoplasties (spelling I know is wrong).
Thanks for listening.
Amy
Dear Panda, just read your report and wondered if things have continued to improve. Your reply would be greatly appreciated.I didn't start Entyvio that long ago (go in for 3rd infusion on the 28th) but was feeling noticeably better within a week of the 1st, and since the 2nd I've only noticed it get better and better. I started weight training and incorporating yoga back into my days just before my 2nd infusion; which combined with a diet plan I'm hitting my 2lb/ week gaining goals and am up 10lbs. from my lowest weight just before starting Entyvio - which just happens to be the highest weight I've been able to hit/ maintain in a year and a half.
I've noticed I'm feeling HUNGRY which wasn't happening before even with 40mg of pred. and have also been able to begin tapering the pred. (will drop to 20mg on 28th - lowest dose I've tolerated without backsliding since May).
I'm sorry to hear that. My first claim just hit. $55k billed, $22k allowed. I have a $2500 out of pocket max, so my responsibility says $1200. I think Entyvio connect may help but I'm not sure how much yet. Also, I think the claim was for my first two infusions.We have had four doses now but the headaches and joint/back pain will not go away. Our insurance company has not processed any of the claims so I do not know how much we will be hit with and today I get a call from Entyvio Connect that says they will not pay anything as she is a minor and the use is off label. I am afraid that the insurance company will not pay now.
How much is your insurance company paying? How much will I be able to negotiate down from the $11800 billed to my insurance.
Hi there! Things have continued to slowly improve. Had a colonoscopy Nov. 18th that showed improvement in the colon, although small bowel remains too strictured to get a camera in there to see what's going on. Ultimately the consensus was that I needed more time on Entyvio to really see if it'll be useful for long term treatment/ management of the disease and needed a game plan to target the small bowel. I think there's a post on this thread somewhere updating about that...Dear Panda, just read your report and wondered if things have continued to improve. Your reply would be greatly appreciated.
My daughters sees a Pediatric GI (for other issues) and asking her Dr what he thinks of Entyvio, his office won't give children Entyvio since the FDA didn't approve it for them. This Dr commented he has one patient that the parents wanted him to give Entyvio to their child. He explained it is too much of risk to his practice should an adverse reaction occur and he would liable for damages should parents sue. This Dr said that they would have to find another Dr. to administer the drug. He also said that it will be in the next year that the FDA includes children for Entyvio. (I realize this doesn't help on what I have commented on but I do hope you Dr has been up front with you. There's nothing worse than finding out after the fact. I hope things work out financially) I will say my insurance has billed this as a higher level drug class since the FDA hasn't released a drug code classification. I imagine after time this cost will decrease. Take care.We have had four doses now but the headaches and joint/back pain will not go away. Our insurance company has not processed any of the claims so I do not know how much we will be hit with and today I get a call from Entyvio Connect that says they will not pay anything as she is a minor and the use is off label. I am afraid that the insurance company will not pay now.
How much is your insurance company paying? How much will I be able to negotiate down from the $11800 billed to my insurance.
A question for those who have had relief from Entyvio:
When did you start to get relief? I've heard different things about when to evaluate - 10 weeks, 12 weeks, 14 weeks...the 4th infusion. Just trying to wait it out, but I've never felt crappier. Going for my third infusion on Tuesday...so I'm almost at the 6 week mark right now.
I'm having my third infusion next week. Wish I could say I'm improving but I've never been sicker. This is the worst joint pain I've ever dealt with. I'm taking aleve but it's killing my stomach. Otherwise I can't even walk on my ankle. I'm having bad abdominal pain several times a day to the point that I'm afraid to eat. I'm also getting acupuncture. Maybe it's time to switch to a crazy diet- AIP orPaleo I've heard helps inflammation.
Hope to report good news in the coming weeks...
Our GI at Mayo said that this drug is slow... but from what they are seeing.. It's "winning the race". Are you sure you gave it the time needed? Our GI wants to see what things look like after 5 months on it. (But we are in a race to save my son's rectum and he's only 14.. so maybe they are not wanting to give up for those reasons. To make sure every possible chance was taken)New to this thread, but I had my 4th Entivyo infusion about a month ago. This is my end of the road drug as I'm sure it is for most people currently taking it. I just had some scopes done today and the doc and I were both surprised to see no improvements from last year..