remicade, your experiences

     I have ulcerative proctitis, classified as mild/moderate.  Hate to see what severe is...ugh.  Anyway, Remicade failed me after my 3rd infusion.  I start Humira on Wednesday. 

     Why are the insurance companies not giving approval?  My insurance company did.  I had to go through my doctor's office.  They must have wheeled and dealed something but all I have to pay is my $5 co-pay.  Are you in the US or Canada? 

     If Humira fails then I am looking at surgery.  The nurse mentioned something about another drug but I told her "forget about it."  Been on prednisone far too long, tried 6MP for over seven years and it made me sicker. 

I just recently started on Remicade and have only had 2 infusions thus far. I can tell you that when I started on Humira, I had normal BMs the very next day after the loading doses. But there were 4 injections at one time as opposed to spaced out infusions with the Remicade. The Remicade has definitely helped and my BMs are improving quite a bit. I will have my 3rd infusion in a few weeks and am hoping I will get into a solid remission with it like I did with Humira. So far so good, but it is slower going than the Humira was right off the bat-at least for me. I have not had any side effects of it thus far, though I did catch a cold that seems to have settled in my chest and I am going to have that checked out. But so far so good on side effects-though again, I have only had 2 infusions.

My insurance has a co-pay of $300 and then a deductible of $2K, so I have to get to that and then the infusions will be covered in full. Given that I was in the hospital for 8 days recently, I don't think we have any issue there, lol. But my insurance is 10% of each infusion. I was approved for the Remistart program though, and they will cover quite a bit of it-they are going to cover $250 of the $300 co-pay, and then I think she said $550 of each $600 for each additional infusion, so it is definitely worth looking into!! It was very easy to get enrolled (I think they do fill up though-you have to make sure you qualify I think), and they are sending me a packet and will send a pre-paid card I will then take to the GI's office to pay that portion. My GI's office has an infusion center-some don't. I also had the option of using the infusion center at the hospital. Every insurance co and plan is different, so I am not sure how yours will cover the infusions. Definitely look into the Remistart program.

The infusions have taken a couple of hours. They gave me benedryl for the first one I had at the office (not the first infusion though-I had that in the hospital), they said they do that in case people react. They start off very slow and then bump up the amount of remicade that goes into the IV as the time goes on. I think it took a bit over 2 hours for me. She said they have to go slower for some people, so infusion times can vary. I have to have benedryl for the next one as well, so I have to have a ride. After that I can drive myself. I don't mind the infusions-with having 2 small kids, sitting in a plush recliner watching TV or reading a book for a couple of hours is kind of nice! (and you can bring drinks, snacks, etc).

If the Remicade doesn't work, Humira could be approved. It isn't approved yet for UC, but many people do get it approved if Remicade doesn't work. But my GI said that even though Humira is made with only human DNA and they felt it could be stopped and then started again, they are finding that people build antibodies to it as well, like with the Remicade, so if you have already been on it, I am not sure it would make a difference, unfortunately. Why did they start you on Humira without approval?

I just had my fourth infusion of Remicade this week. Remicade has been a life saver for me so far. I am feeling great now and I am off all the other so called UC meds. I was scared to start the Remi ....I put it off for a long time hoping that prednisone would allow me to go into remission. I have had no side effects from the Remi and my recent bloodwork was normal. The only downside of it is the expense...I have to pay 20% of every infusion whcih seems to run around $600...I am enrolled in the remistart program which gives me a rebate of around $400 for each infusion. Good luck to you!!!

nightside of eden said...

Supa said...

I just recently started on Remicade and have only had 2 infusions thus far. I can tell you that when I started on Humira, I had normal BMs the very next day after the loading doses. But there were 4 injections at one time as opposed to spaced out infusions with the Remicade. The Remicade has definitely helped and my BMs are improving quite a bit. I will have my 3rd infusion in a few weeks and am hoping I will get into a solid remission with it like I did with Humira. So far so good, but it is slower going than the Humira was right off the bat-at least for me. I have not had any side effects of it thus far, though I did catch a cold that seems to have settled in my chest and I am going to have that checked out. But so far so good on side effects-though again, I have only had 2 infusions.

My insurance has a co-pay of $300 and then a deductible of $2K, so I have to get to that and then the infusions will be covered in full. Given that I was in the hospital for 8 days recently, I don't think we have any issue there, lol. But my insurance is 10% of each infusion. I was approved for the Remistart program though, and they will cover quite a bit of it-they are going to cover $250 of the $300 co-pay, and then I think she said $550 of each $600 for each additional infusion, so it is definitely worth looking into!! It was very easy to get enrolled (I think they do fill up though-you have to make sure you qualify I think), and they are sending me a packet and will send a pre-paid card I will then take to the GI's office to pay that portion. My GI's office has an infusion center-some don't. I also had the option of using the infusion center at the hospital. Every insurance co and plan is different, so I am not sure how yours will cover the infusions. Definitely look into the Remistart program.

The infusions have taken a couple of hours. They gave me benedryl for the first one I had at the office (not the first infusion though-I had that in the hospital), they said they do that in case people react. They start off very slow and then bump up the amount of remicade that goes into the IV as the time goes on. I think it took a bit over 2 hours for me. She said they have to go slower for some people, so infusion times can vary. I have to have benedryl for the next one as well, so I have to have a ride. After that I can drive myself. I don't mind the infusions-with having 2 small kids, sitting in a plush recliner watching TV or reading a book for a couple of hours is kind of nice! (and you can bring drinks, snacks, etc).

If the Remicade doesn't work, Humira could be approved. It isn't approved yet for UC, but many people do get it approved if Remicade doesn't work. But my GI said that even though Humira is made with only human DNA and they felt it could be stopped and then started again, they are finding that people build antibodies to it as well, like with the Remicade, so if you have already been on it, I am not sure it would make a difference, unfortunately. Why did they start you on Humira without approval?

he gave me three months worth of samples, and said that he was fairly confident that he would get approval....he didn't, so im not sure whats next....the doc is not on my good side right now, i felt he could have pushed harder for it, so im going to see another rhuemy i think.

Wow-that just seems wrong to me to start you on it not knowing whether you could stay on it! Knowing these meds are such that they may not work for you again once you stop them, it seems to me that getting approval would be first and foremost. I would push for it too and I think seeing another doc about it is a good idea. Then again, if it isn't helping you as much as you would like, maybe trying the remicade is a good idea. I just hate the idea of taking Humira off the table for you-and I fear that is what it would do.

When I was in the Humira trial and it was working well for me, we had discussed the idea of a pregnancy because my husband and I would like at some point to have another child. Obviously, I would be kicked out of a trial if I had gotten pregnant, so we had talked about the options-and they felt quite certain they could push it through and get the insurance company to approve the Humira, given the nature of the drug and the positive response I had had on it. I know that may not have ended up being the case, and it may depend on a lot of factors, but I would think a doctor could be able to convince the insurance company to cover it since you are already taking it.

You said it worked ok for you-do you feel it is worth the fight to stay on it? Good luck-I hope it works out the way you want it to.

A different GI might write the Humira Rx for arthritis instead of UC, and then your insurance company should approve it. But, the Remicade might work, too. Whatever the case, good luck!

My experience with Remicade was great! I believe I saw results after the first or second infusion and never experienced any bad reactions. I have been on the standard dose for about a year and a half and this past week I have begun to show a few symptoms that might be the beginning of a flare. My GI said he might up my dose of Remicade or lower the amount of weeks that go by before I get each infusion (I was doing every 9 weeks--my DR told me to try to go longer than the 8 weeks since I was doing so wonderfully).

After my first infusion, the symptoms were almost all gone the next day. I've been in remission since, and that's been about five years now. I have a few blips along the way, but it doesn't seem to be for long; maybe a day or two and then I go back to feeling well again. The last few weeks I've been under tremendous stress, and thought a couple of time for sure it was going to send me into a flare, but only had some minor symptoms such as smelly poop/gas, and a little urgency. Upping my probiotics took care of those symptoms quite nicely. Anyway, I've had good success with it.

I had my first remicade infusion on Monday. My BM's seem to have improved. But today i had verryyy bad leg muscle pain. all day long. i finally took Tylenol and it went away. anyone else get this? should i be alarmed?