starting biologics - any insider info I need to know?

[tacom]

I've been on Imuran for 8 months and I've only gotten worse. blubbering thread from yesterday here.

I talked to my doctor today and she said it's time to move on to biologics (to use in addition to Imuran); she asked whether I'd prefer Cimzia, Humira, or Remicade. Unfortunately there just isn't a whole lot of data on patients with mid-small bowel disease (compared to patients with issues at the terminal ileum/colon). There are also no studies that directly compare these drugs against one another, so it kind of sounded like a shot in the dark. I told her Remicade was my #1 then asked her to pick between Humira and Cimzia for me -- she chose Humira.

She'll submit the info to insurance in the morning and we'll go from there. Depending on insurance costs and accessibility, we will choose between Humira and Remicade. 

Any words of wisdom? How did you react to these treatments? I'm used to getting iron infusions and I do vitamin B self-injections every month, so I'm hoping this won't be too different -- aside from a possible reaction to a new drug.

I actually somewhat enjoyed iron infusions for the big comfy chemo chairs and the very friendly nurses. Where do you get your Remicade infusions -- is it a comfortable environment? Anything to share?

Thanks in advance for humoring me.

[OrangePixyStix]

I am on Remicade, started around a year ago, and it's been pretty mild for me. No reactions really at all, I haven't even gotten sick even though I was told it could the lower immune system, and thankfully I was able to get financial reimbursement through the Remistart program. Please do check out www.RemiStart.com if you get insurance approval, it has really helped with my out-of-pocket costs and is made for people with regular insurance. (No cost to send in the forms to apply, not much to lose by trying, you just have to send in your EOB statement after each infusion and then they can mail you a check)

I did start taking extra vitamins daily as recommended by my Dr. Only B12, Calcium, and Folic Acid, and I am still on an anti-inflammatory as well. I have been going to a hospital every single time so far and have mixed feelings about it (there's a thread a few down about some complaints) but overall the process is pretty smooth and the environment is very comfortable. I get a private room w/ TV and DVD player, option for food to be brought from cafeteria (though usually I bring my own or have someone bring me a hot lunch), and spend from 4-5 hours there from start to finish. They do give me some pre-meds including liquid Benadryl, so often I end up just taking a long nap during the process.

I have now started the process for my Dr to get me signed up with an infusion center instead of a hospital, so I'm going to try my first treatment at one next month.


For me, it's been a really good treatment and has gotten me back to good health after a pretty severe flare-up in early 2012. I also like how you can adjust the frequency based on your symptoms, the 8 week schedule works really well for me but I think some people go as frequently as every 6 weeks or space out to 12 weeks depending on how you are doing on it.

Good luck, let me know if you have any other specific questions that I might be able to help with.

[caramia]

Over the last 4 years I've taken all 3 of those drugs. Humira worked well but the injections were painful for me (the drug burned after injection & the prefilled pen hurt going in) so I switched to Remicade.

I was on Remicade for 5 months but my liver enzymes kept elevating. My GI wasn't sure about the long term effects so I switched to Cimzia. I got my infusions at an infusion center- I had a private room with a comfy recliner, TV, and lamp. There were nurses to monitor for signs of rejection, but I could nap in between their visits. Each infusion took about 4 hours but it was a nice break.

So far, Cimzia is working well enough. I have symptoms but they're not horrible. The drug comes in a syringe, which I find easier to inject than a pen. It's a pretty thick liquid, so the injections take maybe a minute- the wait can be slightly painful but I can handle it. I've considered going back to Humira if Cimzia doesn't work out, but using a syringe instead of a pen.

All 3 drugs have co-pay assistance programs, so look into those. I think you pay about $50 per month (I have extra insurance coverage so I'm not totally sure). Humira & Cimzia are both mailed by a specialty pharmacy once a month in an insulated container. If you don't have a safe place for the package to wait, you might need to be home. The pharmacy calls each month to scheduled the next delivery.

Good luck- I hope one of these works for you!

[tacom]

thanks -- this is exactly the info I was hoping to get.

It sounds like this shouldn't be too much of a change -- my immune system is already lowered (with the 3.9 WBC to prove it!) due to a very heavy dose of Imuran (150% of the max suggested dose for my weight).

I get IV benadryl before iron infusions and enjoy that; it makes me nice and sleepy, so I nap during the infusion and then sometimes a little after I got home. I'm on vitamin supplements for poor absorption and give myself B-12 injections each month (just a tiny syringe though). caramia luckily we have a doorman who can hold our packages so that would work out well if we go the humira route.

When you say you pay $50/mo, is that after the assistance program? that isn't bad at all!

thanks OrangePixyStix & caramia

[OrangePixyStix]

Dec 18, 2013 9:59:50 GMT -5 tacom said:

thanks -- this is exactly the info I was hoping to get.

It sounds like this shouldn't be too much of a change -- my immune system is already lowered (with the 3.9 WBC to prove it!) due to a very heavy dose of Imuran (150% of the max suggested dose for my weight).

I get IV benadryl before iron infusions and enjoy that; it makes me nice and sleepy, so I nap during the infusion and then sometimes a little after I got home. I'm on vitamin supplements for poor absorption and give myself B-12 injections each month (just a tiny syringe though). caramia luckily we have a doorman who can hold our packages so that would work out well if we go the humira route.

When you say you pay $50/mo, is that after the assistance program? that isn't bad at all!

thanks OrangePixyStix & caramia

Yes, I think RemiStart is aimed at only costing you $50 per treatment out of pocket (with insurance coverage).   I had to pay at the time of the service and then wait 3-5 weeks for the check, but it usually ended up costing between $50-$75 per treatment once I was reimbursed.

[tacom]

Dec 18, 2013 10:06:53 GMT -5 OrangePixyStix said:

Yes, I think RemiStart is aimed at only costing you $50 per treatment out of pocket (with insurance coverage).   I had to pay at the time of the service and then wait 3-5 weeks for the check, but it usually ended up costing between $50-$75 per treatment once I was reimbursed.

thank you! what was the OOP cost before remistart, if you don't mind me asking? (I understand remistart is only a 12-month program.)

[OrangePixyStix]

You can apply for Extended Access after the amount is exhausted with RemiStart, but I had actually met my deductible this year before I exhausted the reimbursement amount, so I think I can still use the program next month.

My first check was for $1,520, second was for $1,126, and the last one I got was just under $700. I don't think I ever paid more than $1,600 out of pocket even with a brand new deductible early in the year, and by July I had paid my deductible off and everything was fully covered 100% (except a few PITA coding issues by my insurance) so that I didn't have to pay anything when I went in. (I use AETNA, if it matters) HTH!

[caramia]

Dec 18, 2013 10:10:21 GMT -5 tacom said:

Dec 18, 2013 10:06:53 GMT -5 OrangePixyStix said:

Yes, I think RemiStart is aimed at only costing you $50 per treatment out of pocket (with insurance coverage).   I had to pay at the time of the service and then wait 3-5 weeks for the check, but it usually ended up costing between $50-$75 per treatment once I was reimbursed.

thank you! what was the OOP cost before remistart, if you don't mind me asking? (I understand remistart is only a 12-month program.)

I don't know about Remistart, but with the Cimzia co-pay program you can reapply every year & there's a good chance you'll be accepted. I think the Humira program lasts as long as you're on the drug. I've had good luck calling the programs (get the number from the website) & asking lots of questions.

[tacom]

$1,500/infusion makes me want to puke. omg. lol. hoping everything works out.

I'm really frustrated that I'm sitting here waiting for the insurance green light. I've maxed everything out this year (in network/out of network) so any infusions would be free if I do them before the 1st.

[caramia]

Dec 18, 2013 10:35:33 GMT -5 tacom said:

$1,500/infusion makes me want to puke. omg. lol. hoping everything works out.

I'm really frustrated that I'm sitting here waiting for the insurance green light. I've maxed everything out this year (in network/out of network) so any infusions would be free if I do them before the 1st.

Look into the appeal process for your insurance- you should have a good case since imuran hasn't worked.

I took entocort earlier this year- it was supposed to be $1k/month because it's classified as lower efficacy/higher cost by my insurance. I filled out an exception request (with my doc's help) & got it reclassified so I only paid $15/month. I did the same with cymbalta.

[tacom]

Dec 18, 2013 10:41:59 GMT -5 caramia said:

Look into the appeal process for your insurance- you should have a good case since imuran hasn't worked.

I took entocort earlier this year- it was supposed to be $1k/month because it's classified as lower efficacy/higher cost by my insurance. I filled out an exception request (with my doc's help) & got it reclassified so I only paid $15/month. I did the same with cymbalta.

nice work!

I don't know how they could deny it. earlier this year they (Aetna) argued that it's customary for patients to go on Remicade only after they've failed other therapies. I thought this was duuuuumb, since my Crohn's is quite severe and I had a rare complication. Anyways, they wanted me to fail 6 months of steroids & imuran before they'd pay for Remicade.

I failed on Imuran. Steroids are contraindicated since I have osgood schlatters disease. So now I'm just waiting for (what feels like) no real reason.

[OrangePixyStix]

Dec 18, 2013 10:35:33 GMT -5 tacom said:

$1,500/infusion makes me want to puke. omg. lol. hoping everything works out.

I'm really frustrated that I'm sitting here waiting for the insurance green light. I've maxed everything out this year (in network/out of network) so any infusions would be free if I do them before the 1st.

To put it in perspective, the full cost of one treatment is over $10,000 per session!  


It is quite annoying to look at the cost, and then to have to put it all down on a credit card and wait to pay it off for the reimbursement check, but once you get the process down it's not so bad.   I guess for me, dealing with the annoyance of cost and time-consuming treatments is better than risking another serious flare-up that could result in a surgery down the line.  

Trust me, I was really hesitant and nervous about jumping into the Remicade treatment plan, especially knowing that you can't exactly go off it and then return again later down the line (continuous treatments are the way it stays effective, apparently).    So far, all the time and expense has paid off and I feel as good as I did before I had the major health decline. 

I had to just think of it in terms of the money is going to be spent somehow in my life anyway, my health is the single most important category that it would make the most impact.   I'm cheap on spending for the most part, but when it came to feeling healthy, I can overlook the bulk of the cost.   

[tacom]

oh, I'm not hesitant to begin at all. emergency surgery was awful, and I'd like to push repeat surgeries off as long as possible. I know biologics are my best bet at accomplishing that.

thanks for all the tips!

[bcv513]

I have no experience with biologics (yet) but I just wanted to say I wish you well with your treatments

[tacom]

nurse called today. first Remicade infusion is scheduled for Tuesday 12/31. confirmed with insurance that this one will be 100% covered because I've maxed everything out this year. yeah!

I'll apply for Remistart when I show up for my first infusion. thanks everyone!