Last minute switch

It really varies a lot insurance-to-insurance. Some do require at least one tnf-alpha blocker (like Humira) be tried before going to entyvio. Others do not and any biologic of your choice can be your 1st. I'd call your insurance, and ask. Better to catch it early, and make sure your doctor is requesting the right thing, and not something that can be denied. Why waste weeks of inefficiency, back-and-forth, and general stupidity lol.

There's pros and cons to everything.

Humira is a convenient at-home injection you can do yourself after a nurse shows you how. Humira works fast in 4-6 weeks or less in most UC patients. Humira is 100% systematic.

Entyvio is a new class of site specific biologics, that suppress only the immune system components related to your digestive tract. The advantage is that you are less likely to get an infection elsewhere within your body, there is no lymphoma risk, and so forth which are concerns with tnf-alpha blockers like humira. Entyvio is an IV-based infusion. Entyvio can take 12-14 weeks or less to have a response in most patients (longer than Humira). You must go to an infusion center (at a hospital or at some gasteroenteroligists offices) and sit while a nurse sets an IV, your medication drips, and then you can leave . The Infusion itself takes 30-minutes, although it takes about as long to mix the medication, set the IV, bandage you up etc. This medication is fairly new, so it doesn't have a decade or more of a safety record of Humira. However, it should be a lot safer due to the site specific measures.

I like the sound of site specific. My GI says he prefers Entyvio, perhaps that is why. It is not covered, however, by my insurance. Humira is covered upon approval. Guess I need to call the insurance and confirm, because you are right, this can waste time. My insurance changes in January, and I think I will have more covered GI drugs with the new one. I appreciate the perspectives. I guess I will relax about whatever works out. My GI and covered hospital is an hour and 15 minutes one way, so infusion will be inconvenient.

I have been on prednisone for five weeks (my flare started at the end of August) and have been struggling with appetite. I have no desire to eat; sometimes it even feels like food aversion. I've been drinking two Ensure Plus a day to compensate, and I *am* eating, but my weight is still down about eight pounds from where it should be (I'm 5'3" and usually weigh 115). I'm also experiencing reflux symptoms like abdominal fullness, coated tongue/weird taste on my tongue, burping, etc.

I'm waiting to start Humira this Friday and am hoping if I respond that my appetite will come back and I can get off the prednisone, which makes me so utterly miserable.

I also have the soreness after mild activity that would usually be a non-issue for me.

I hope you get some relief from a biologic, too. I recently talked with someone who had j-pouch surgery and she told me that she felt the risks from taking a biologic were lower than those of her surgery, and that she definitely recommending trying biologics to see if they would help. I have resisted for a while and am now at that place of accepting that I need to get my life back, and that there is risk in everything, so...onward with dialing up the treatment.

Fadoozle, thank you for sharing. I suppose it is hard to really know what symptoms come from what exact thing, but for sure, Pred is nasty. Do they have you at a pretty high dose? I am on 40 mg, but they have me tapering 10 a week. I anticipate a lot more Colitis issues once the taper starts. I hope you do well on the biologic, and are able to enjoy eating again soon.

Butthurt, thanks for the positive word

Another thing I hate about Pred is being exhausted can't keep my eyes open, but the mind never shutting down enough for a nap or sleep.

It's been two weeks now, and the only progress on the Humira approval is that a pharmacy called and said they had transferred my prescription to another pharmacy that my insurance covers. I should hear from them by the middle of the week. In the meantime, I called my GI yesterday and spoke to a nurse about going back to 40 mg of pred because I am getting so much worse on 30 mg. I do ok in the morning, but hurt worse and worse as the day goes on. Bleeding and mucous have returned along with more urgency. I was up every 2 hours last night to go to the bathroom because pain wakes me up.

It has crossed my mind, but at this point I think splitting the 30 mg would just make it horrible 24/7 instead of at least being manageable in the morning. I am hurting pretty bad this morning, though, so who knows.

If you feel like you need to up your pred I certainly wouldn't decrease it. Unfortunately sounds like you need to be the squeaky wheel with your GI. You might want to check with your insurance--i am on entyvio infusions and since they are done at a hospital facility (but not the hospital itself), its considered part of my medical insurance and not prescription, so it doesn't matter that its not on their formulary list. Plus its covered 100% because I'm on medicare with a supplemental. Anyway I was surprised that it was falling under the medical side. I don't know about traditional insurance, but its worth asking.

The problem is that January is far away, and you will probably get approval for the humira first. Then you will have to give that a fair chance, so entyvio will be off the table until you know whether humira works. That's probably 2-3 months away. Actually, if humira works, it is easier since you can do it at home. i really hope you get approval this week. I don't think I'd go down to 20mg if you're having so much trouble on 30mg. I usually could take no drugs and taper down to 15mg or so without any symptoms arising. That's probably what they think is the situation, but it's not. Some people need longer on igher doses to heal. It sounds like you definitely need the humira, or something, to get you in the position to taper.

So, I didn't taper on Sunday. I stayed at 30 mg. Despite that, I went 15 times yesterday, and can feel my body breaking down. I had severe chills after one very painful toilet episode last night. I finally got approved to go back on 40 mg until I start the Humira, but I wonder if it will be enough to turn things around at this point. Finally talked to the coordinator this morning at the GI, and let her know that because the prescription was transferred that she needed to do more to get the ball rolling. At least it has been approved, and it is at the right pharmacy now. The pharmacy said once everything was in order it would be 3 to 5 business days before they got it to me. So....end of this week, beginning of next on worst case.

Spring

I am not sure what pharmacy or what country you are in but I had express scripts and called them everyday to expedite the script. I also had my doc/pharmacy team call the pharmacy and request that they expedite my order. I got my Humira within 3 days after the pharmacy got the correct script. This is my 4th week but I noticed a big improvement last week about 4 days after my 2nd set of shots which was the rest of the loading dose. I weaned to 10mg of prednisone today (I am afraid to speak too soon) and was stuck at 20-25mg when I started Humira. I am so sorry you are going through this esp. this time of year. Call the pharmacy again tomorrow and ask them to rush the order! I pray you get relief from the 40mg and then again with Humira.

Much hugs and love,

T

Thank you T. I am really hoping that I respond well to the Humira. I will call tomorrow. I have never heard of the pharmacy that is handling my script. I have tried really hard to maintain basics for my kids this week, but despite cutting way back I overdid things and can hardly walk tonight my lower back and everything hurts so bad.

Thank you so much T and irish4me. They did tell me to sign up for the ambassador program, but I don't have a start date yet. I didn't realize that it offered so much. My hubby handles all splinters and such. I have asked him to do the injections for me because I just don't know if I could ever get past that hurdle. Thankfully that kind of thing doesn't bother him. Maybe when I call tomorow they will know my start date. My youngest is in speach therapy three times a week, and 2 of the times goes during break. When I was so sick in January I had to send my kids to stay with friends part of the time. I feel the most torn about him missing out on that right when he is doing so much better if I can't keep things up.
Thanks again for the encouragement. It helps so much to vent on here.