Been awhile

Since I posted here. Truthfully, I abruptly stopped posting here because I couldn't log in, said my password was incorrect and when I sent for a new one/retrieval, said it emailed me one but I got nothing, then I thought I could start a new account with my gmail, but it said I had one for that account. I guess I may have had one from way back when, looking for stuff about Graves. And then real life blew up and I had big things to worry about. On a lark, sent for a password retrieval and actually got one. I'm keen to inquire in RA forum about methotrexate, don't imagine too many folk in here are on it but decided to drop in and give an update, for those who remember me.

Currently, on Entyvio because predictably, the Humira crapped out ( ha ha, no pun intended) after being on it for a year and a half, weekly injections. I was sad to leave Humira, my amabassador was so nice, I had to give her the " it's not you, it's me, my doctor says I can't see you anymore." speech. I've been on. Entyvio almost a year, going off Humira was rough on all my other stuff, psoriatic arthritis, psoriasis and active thyroid eye disease and uvitus came back with a vengeance , so I'm also on Methotrexate. And of course, I'm on ye olde Rowasa enema, though mine is generic. I'm back on Kaiser insurance, so before rowasa, GI at Oregon Health Sciences had me try Tacrolimus supps. They didn't do a whole lot except cost me money to a compounding pharmacy because my insurance wouldn't cover it. I did those for 3 months. After those and weekly Humira, that doc wasn't happy with my level of inflammation in rectum, so Humira got kicked to the curb and Entyvio plus Rowasa it was. It's been Ok, not thrilled with the enemas but I'm used to them and I hate methotrexate but it's all keeping everything stable.

I hung up my career in semiconductors and went through an expediated, very express teaching program specifically designed for people from tech industry wanting to teach STEM. I now teach middle school math. What a crazy year but with a teaching job, came way better insurance. I'm back with same GI I had before, which is fine, he's Ok. Ultimately, I would like to be on Xeljanz, as my OHSU docs said it would be an ideal biologic for me but insurance said no but yes to Entyvio, go figure. I get back to kaiser, where doctor is gatekeeper, no insurance approval and express my interest in trying Xeljanz and he tells me kaiser doesn't have Xeljanz. WTH????How can a huge health care system like Kaiser not have Xeljanz?

So no, not off living an IBD free life. Lol, do any of us ever? Hope everyone is good, enjoying summer.

Thanks' I was going to look when I got around to it, just to see.

I call Portland, Oregon home but I'm a native Californian, the Bay Area, the San Jose/Santa Clara area. Most of my family is still there. Glad to meet a fellow kaiser person. I've been on and off kaiser system most of my life, mostly on. It's a much better system now than it used to be. Back in the day, it was terrible. It's really efficient now, I never wait long for appointments and any medical advice I need is very accessible. The only issue I had was a rude and dismissive rheumatologist but that's more personality than the system. I have a great primary care doc, I go to her instead for rheum care. She gave me a cortisone shot for my knee, the Rheum doc woukdnt give me time of day. So sorry to bother you with my disease, dude. Total jerk.

Honestly, thought the GI doc was a bit cagey when I inquired about Xeljanz. I think if I pushed he would have said, yes, we have Xeljanz, just not for UC, not for you. The infusion nurse at my infusion clinic said Kaiser was slow to adapt to the new biologics. I've been on Entyvio almost a year and that nurse said Kaiser had not had that med very long. Anyhoo, you are right, I will probably have to fail at least two more biologics before I get behind the golden door where the Xeljanz is. Lol!!!!!!

Good luck with the move! Hope you get a good GI doc, I notice Kaiser is building like crazy over in the East Bay, saw their new facility when I drove by the Livermore/Pleasanton area last time I visited. I lived in Pleasanton for a few years.

Thanks for asking.

The Entyvio, or as I like to call it, the worlds most expensive anti diarrhea med is holding up OK. Over all, it's been a better drug than Humira for my UC. it got my inflammation numbers where they need to be. It dehydrates me like crazy, now I pound down water before before right after infusion. I dunno, I'm not there yet but it's on my radar that my end result is gonna be stick a fork in my colon, it's done. I already had to move my Entyvio infusions to 6 weeks and if I fail this one and the next biologic doesn't get stellar results, I have to be realistic about ditching my colon.

Maybe you heard or someone else...I see so many biologic med ads cross my Twitter feed and thought I read that Entyvio makers had a home, inject yourself version waiting FDA approval. Did I imagine that? That would be a game changer for that drug.

Oh and while I'm here, what a freaking joke dealing with Entyvio Connect for the copay assistance. Kaiser is unique in that you can't do it through them. My insurance coverage is I pay 20% of specialty drugs...which is a chunk of change from 8 grand. Well, with Humira, they were great, filled out a claim and a week later, I got a check via Fed Ex. I had to fork up almost 1400 bucks and then it took 6 months of calling and inquiring about my claim. I had to re give my info numerous times, fax my paperwork 4 times. One excuse after another, ridiculous. This company is really stupid. I finally get a check in May, for my infusion I had in December. Two weeks later, I get another check designated for the same claim. Of course I have to give it back, so I call and straighten that out. These idiots sent me two more checks after that. If I was a dishonest person, I could have cleaned up with several thousand bucks for free.

I can't complain, after one crappy health care plan after another, I have a no deductible plan through the school district I work for. It isn't that cheap but way less premiums than what I was paying. My out of pocket costs per year is 1500 bucks. But sheesh, Entyvio, honor the copay assistanance you promise without all the aggravation.

You're not the 1st person to say entyvio connect sucks royally. I'd have hoped they would have streamlined and simplified that process by now. Remistart is easy and helpful, my only experience with such programs.

Pro tip: Those big, reusable grocery totes/bags work great for enemas at the pharmacy. I bought some of the RiteAid reusable totes at my pharmacy once, and I bring them back to the pharmacy (when I remember to) and then it's a little less obvious what you have got. But over the years of getting enemas at the pharmacy, I could frankly give a crap if others know what I have. I'm at the pharamcy with a bunch of older folks asking about Viagra and hemorrhoid creams there anyways, so I'll carry my pile of enema boxes without shame, with a smile on my face. Own your feelings about it; rather than let them hang over you like a guillotine blade.

Post Edited (iPoop) : 8/8/2018 2:06:28 PM (GMT-6)

I hate those big enema boxes too. So many times I've had to carry them out, and I was at the grocery store picking up. At a medial center or pharmacy, is one thing, but walking through your local grocery store with 3 or 4 big boxes that say rectal suspension enema is embarrassing. Whatever works. I am thankful I don't do it anymore, but it wasn't the end of the world, worth doing it if it helps!

Another thing I hated was dropping off stool tests. How badly does that suck? "hi, I am here with my specimen". I hate when they want to check it, like I would actually give them an empty kit... I think they are checking that it's labeled, but you really want to duck down so they can't see you, pass a brown paper bag over the counter, and run away before they see you.

Takeda IS working on a home-injection version of Entyvio (yay!): https://www.centerforbiosimilars.com/news/takeda-announces-collaboration-on-needlefree-biologics-delivery

And yes, those darn suitcases of enemas...and the tacrolimus suppositories in my fridge...and having to bring a "sample" to the GI's office in a cooler bag...honestly, the barbie butt sounds more appealing every time I have to collect a sample or put something in my rear 😂

You're all hilarious, I needed a laugh this morning thanks

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