Entyvio every 4weeks?

I think I would want to get the levels checked and increase the dosing before moving on (depending on what the levels show). If your levels are high already, more frequent dosing isn't likely to solve anything. Have you tried any TNF blockers? If not, they are a great options, but I personally would prefer to stay on entyvio since you've had some luck with it, and it seems like you're still in decent shape overall. I would really push for the test to see where the levels are, even more so than pushing for a blind increase, though I'd try the more frequent dosing if it gets approved. The problem you're going to face now is knowing whether it's the entyvio or the pred that's helping. Have you had stool tests and FCP? How about imruan or 6mp? Has your GI mentioned using one of those in addition to entyvio?

Ditto get the entyvio levels test. Have you considered adding immunomodulators (azathioprine/imuran/6mp)? I'd do that before ditching entyvio.

I agree with a number of the other posters - do not ditch Entyvio. You found something that works, even if it isn't perfect right now. Some people never find anything that gets them back to pre-UC so I would be nervous about ditching the Entyvio completely.

I'd look to add another medication to the mix, get my Entyvio levels checked, and wait for the increased dosage. I was on Entyvio every 8 weeks, got 70% effectiveness, and then my doctor decided to move it up to 6 weeks. That really hasn't made a difference. I have a scope coming up that will likely show my doctor that I need a second medication.

To answer your questions: yes, get your levels checked; the insurance never denied my request to move up dosage (at least to my knowledge), & the insurance process was fairly quickly. Most doctors call the insurance company directly. I'd imagine that speeds up the process.

I have been stuck in a back & forth between the dr and insurance who kept blaming each other for not having the peer to peer phone call and then on Friday insurance called me and said even with the peer to peer phone call the dr had to file a written appeal. AND insurance requires the the Entyvio levels be tested. My doc says I can't have my levels tested until right before my next 8 week infusion which isn't until July. Once they get the results back they will file the appeal.

I am so frustrated. I had asked in March, April and May about getting the levels tested and was ignored. The doc who has been handling this is not one who I have ever seen or spoken to. I don't think he knows what he is doing at all (did I mention that at one point he messaged me to use preparation H?!!)

I have a colonoscopy on 6/18 by one of the docs I like and I am going to ask if I can have him handle my case. Do you think having a different doc do the appeal will cause any problems?

Thankfully symptoms are still mild (now mostly just blood every few days), but it's been almost 6 months since they started and I am on prednisone (down to 15mg). In March my blood work said I was slightly anemic. As tired as I feel now I suspect that has gotten worse. Bottom line is that Entyvio every 8 weeks and Asacol is not keeping me in full remission. I either need more frequent Entyvio or a new med. Would rather stay on Entyvio so hopefully I stay relatively stable until this gets sorted out.

Ugh. If there's one thing we do as a hobby, it's squabbling with insurance to get the treatment we need. I wish it were easier.

Seems reasonable to at least try a 4 week interval for several consecutive infusions to see if it does help, and continue/discontinue based on symptoms. The test would be nice evidence to have.

The only other immunomodulator to try is methotrexate, which is a bit different than the rest. Some have had luck where the others did not work.

CC where are you located in PA? I see an IBD specialist at University of Penn in Philadelphia (which is about an hour from me) but it is so worth it. He has written several letters for me to insurance and travel insurance etc. and he answers my texts at anytime of the day. I too get frustrated but I think it's more because of the disease itself and that the meds are not perfect. I am so happy for you that your levels were low as that gives you hope! I failed Humira (now on Remicade) and my doc said there were a lot of options still in the wings. He also mentioned Xelanz which he said had a 50% success rate in clinical trials where most of the patients are pretty severe. I def. think you should switch docs as this is a lifelong disease and you will be married to your health provider. You waited toooo long for that Entyvio level!

Eh, my doctor took me off of my bridging medication too soon. Entyvio works slow. You need a crutch for awhile or else you'll get some symptoms back. I went onto Uceris for about two months and just had a scope on Friday.

Still some mild inflammation (zero symptoms since the Uceris though) - Currently waiting for the 4 week approval for my Entyvio. My doctor figures that going from 8 weeks to 4 weeks will kick the inflammation out.

Glad you got the 4-weeks of entyvio approved. Cheers on a new gasteroenteroligist, as it sounds like you have more than enough reason to shop around.

I hope the increased dose does the trick too. I think looking for another GI is a good call, it sounds like yours isn't the easiest to communicate with. The teaching hospitals are great, but some of the doctors seem like they are overburdened. I also find sometimes a younger doctor is able to give you more focus and they do use email and patient portals. I found it so much easier to be able to login and view notes/results. Remicade is always an option, but I understand why no one wants to rock the boat. If you're at 90%, maybe you can get things to 100% with enemas or something? Diet? I also see your side, with a family history, you don't want to have low level inflammation forever since it can put you at risk. Remicade does have the highest success rate, and you have the option, so give it some time but don't wait forever.

Are you still on prednisone? I personally don't consider myself well at all if I am on pred, but that's likely because the side effects of the prednisone are so awful for me. I hit a point where i'd rather live with the flare up, and not eat, than take the prednisone.. you definitely need to get off steroids.

If you look purely at tnf-alpha's then the weight-based drug (remicade) generally does better for patients at the high or low ends of weight range then drugs that aren't weight-based (humira). So, if it ever came to you needing to try tnf-alpha blockers then go for remicade.

If you were to fail entyvio then you still have the Tnf-alpha-blockers, xeljanz, and stelara (off-label). I don't see any mention of immunomodulators within your signature. I'd strongly consider adding an immunomodulator to enyvio: azathioprine, imuran, or 6MP. As immunomodulators are potent UC treatments in-and-of themselves (the biologic-antibody prevention is a plus). I'd think you have a lot of options left.

Surprised the teaching-hospital doctor wasn't all that good. Although I guess it generally holds true that the best doctors don't always have the best bedside manner <_<.

I have had two 4-week infusions so far. The 3rd will be next week. Not sure if it's helping. I rarely see blood now which is good, but stool is less well formed -- still not diarrhea though and it is somewhat formed though in pieces or thin. I was down to 5 mg of pred, but when the stool got less formed I went back up to 10. Really want to get off the pred ... been on it since May. Still on steroid enemas too that I would like to get off of, Been on them since the end of June.

Had the appt last week with the new GI.I liked him. He seemed to really listen to me. My only hesitation with him is that I'm not sure how much experience he has with IBD and he seems to be about my age so not sure how long it will be until he retires. I am pretty sure I am going to switch to him anyway.

Had a really bad appt with the PA at my GI's office today. She has such an attitude towards me. I asked her what I should do if I see something that she puts in the visit report that is incorrect (last visit in July when I was still trying to get authorization for 4 weeks she wrote that I hadn't seen any blood for 2 weeks which was totally NOT true. Glad that didn't influence insurance to deny the 4 week interval). She told me that she sees hundreds of patients and doesn't remember and if I was going to be that "nit picky" she didn't know what to tell me.

She really wants to get rid of me and switch to Hershey. I told her that I didn't want to go to Hershey. Then she said that I would need to start seeing a doc at the practice instead of her and I had no problem with that (it's what I had been asking for over a year) and then the doc I wanted is already booked until Jan. The whole visit she was just so dismissive of me and acted like I was at the end of the line for medications and needed the experts at Hershey. The only biologic I have been on is Entyvio! I know there are several options still available. Then she forgot to write on the order to give me a kit to do a comprehensive stool study that tests for several pathogens and parasites. We talked about doing it just to make sure there is nothing else going on. I'm sure it's not c-diff. I guess she decided that I said I didn't want to do it (not true!). I did tell her I didn't want to do the genetic cancer testing that they have just started offering. Obviously I have a big communication issue with her.

blah ... I have been upset and depressed all day. Definitely time to move on from that practice! I know I shouldn't let people get to me but when you are seeing someone for help and they treat you like she did it's difficult not to take it personally.

Sounds frustrating! Sorry you had to deal with that PA's unnecessary sass...