BEEN TOO LONG IN A FLARE LITTLE RESULTS

Remicade has a co-pay program that lowers the co-pay to $5. It is not based on your income. I have only had two doses so far, but I don't think I've had any side effects yet, other than feeling a little lightheaded after the first infusion (but this didn't happen after the second infusion). Remicade is slightly more effective for UC than Humira. I don't know much about Entyvio. Have you asked your doctor which one he recommends?

Sorry to hear you're struggling with a difficult flareup.

>> Does this change the “type” I have if now it appears distal left?
No, you are always classified based on the greatest extent and severity of illness you've ever had. As an example, I am a severe proctosigmoiditis case. Today, I am in a remission and absent all inflammation. Our extent and severity can vary throughout the course of our illness and that is normal.

>>Who out there for biologics is on what, and your experience?
Remicade and Humira are the two most common biologics UC patients start with. There's also Entyvio, xeljanz, and Simponi which are often the second biologic we try. I've been on remicade 6+ years, no side effects, and have been in a long, sustained remission thanks to it.

>>Does anyone in USA get their biologics from Canada,.If so, a lot less expensive?
Never heard of anyone successfully doing this. There's patient-copay assistance programs available for the biologics, which can save some. But, as you are on Medicare I believe you cannot use them. You cannot be on the med manufacturer copay assistance programs and any other assistance program simultaneously. Biologics have biosimilars, which is the closest thing to a generic for them, and are 10-20% cheaper then the brandnamed biologic. Examples are RenFlixis and Inflectra are biosimilars to Remicade.

However, you do not mention thiopurines (azathiopurine/imuran or 6-mercaptopurine) within your medication history. I would ask your doctor about those medications, as they are all generic, and therefore a lot cheaper then biopgics are. Disadvantage is thiopurines take 3-months to work, and you'd have to be on pred simultaneously until those meds kick in.

You can also ask about 40-mgs, which is a more typical dosage of pred for us during flares. We can be given up to 60-mgs of oral pred, when needed.

>>When I taper pred will the UC attack me again?
That's a toughie to know in advance for certain. If our maintenance meds are enough then, no, we do not flare again as we taper down the pred. If our maintenance medications are not enough, then yes, we will flare as we taper down. We always worry about that happening, and no guarantees of either outcome. We hope for the best, but have a backup plan in case we do regress during tapers.

I am on Medicare and entyvio. Do you have a Medicare supplemental insurance? I have a plan F which picks up the 20% Medicare doesn’t. Since my infusions are performed in a hospital facility Medicare and the supplement cover the medication instead of sending it over to the prescription side of the program. So I pay nothing for my infusions. If it was administered in a dr office I don’t believe that would be the case. My infusions are billed at $15k but Medicare covers it at $5k and my supplemental picks up $1k. If I didn’t have the supplemental I would have to pay the $1k. I believe remicade would be a similar situation (at a much lower cost of course) because it is also a infusion medication. Any pills or self administered shots would be on the prescription side.

I have been denied all copay assistance cards because of Medicare. However most companies who have copay cards also have a free program as well. It’s a slightly different time consuming process but well worth it. Let me know if you need more info on that.

I am very happy with entyvio and in a full remission. Yay!

Yes, I have tons of Uceris. Unfortunately my colon was not on board with it on this attack.
I am not on Plan F yet as I am on an HMO but we are getting to that time of year when we can switch.
All the doctors I see in my Sharp Rees Stealy here in San Diego are doctors I have seen for years
( GI retiring NOW though😩)
No I did not know we can use the Biologics at a less expensive cost.
I will call my provider United Health Care Once I see the doc and he gives me options.
This new doctor already thinks I have to step up based on the ulcers he observed on the left side.
SO very happy you have achieved full remission🙏
The big obstacle so far seems that I am not qualified to be included in low cost assistance programs
In Medicare.