Notice from Insurance about Switching from Remicade to Biosimilar

[awoenker12]

Hey everybody. So today in the mail, I got a notice from my insurance that says that beginning February 1 next year, they are going to switch my Remicade to a biosimilar. I am very hesitant to switch since I have done so well on Remicade. They stated that unless there is approval by my doctor to stay on Remicade, they're going to switch me to a biosimilar. My concern from what I have read is that if I switch to a biosimilar and it isn't as effective as Remicade, I won't be necessarily able to switch back to Remicade due to antibody formation. Should I reach out to my doctor about this? Any insight is appreciated. Thanks!

 

[Jo-mom]

Hi @awoenker12. It won't hurt to reach out to your doctor. This is also happening in a couple provinces in Canada. I have done some research, and it appears many don't notice any difference when switching. I understand though how you feel as my son is on Remicade and I also would feel the same way if they were to switch it to a biosimilar. Talk to your doctor at least, but I don't think they would be making these changes for people if biosimilars weren't effective. Glad you are doing well!

 

[Lisa]

Definitely reach out - my prescription specifically states NOT biosimilar....

 

[awoenker12]

Thanks guys! I'm gonna call my doctor and see what he says today.

 

[my little penguin]

Talk to your Gi - Gi would need to prove ira medically necessary to insurance for you to stay on remicade. But definitely have the conversation

 

[Lady Organic]

I agree. When this is going to happen with Humira, I am going to ask my GI to remain on it, no substitute. I have heard research so far as shown there are no issues switching, but all of this is so early to know fully in the long run. It can often take a year or more for a relapse in IBD after a prolonged remission under treatment. Moreover, loss of response over time to any medication is common. I for one really prefer not to play with any variable involved in a treatment that works for me. I have had enough of that one bad experience after changing a medical plan 10 years ago that from now on, when something works, I wont play or modify it, unless I am forced to do it.

 

[kiltubrid]

I got the same notice from my insurance last month, and I already had a documented history of the biosimilar not working for me.

Three years ago, after being on Remicade for about four years, I tried the biosimilar for six months right when it was made widely available, and it wasn't effective. In fact, it caused a flare and it took me a year to get Crohn's back in remission. My doctor wrote a note to the insurance company at that time and they approved Remicade for me since the biosimilar didn't work. I had no trouble switching back to Remicade as far as my gut was concerned. It did take about three infusions to build up to the level where it was effective for me and I got back into remission.

So when I got the most recent letter in December of 2020 about my insurance again kicking me off Remicade, I asked me doctor to write another note to the insurer, which she did, and, once again, I got special permission to be on Remicade due to my history. My insurance will cover Remicade for 2021, and then I'll have to have another note written each year to get the waiver. (This is how my doctor gets to spend her time.)

If you have never tried the biosimilar, you might need to go on it for a while and maybe it will work just as well as Remicade. I wish it had worked for me! It is effective for many people and maybe you'll get lucky.

Before I was allowed to try Remicade, I had to jump through hoops with several other medications that didn't work for me, just to please the insurance company. I've had to live through a lot of flares thanks to the insurance industry wanting to overrule doctors with prescriptions.

 

[paddywack]

My insurance did that to everyone about a year ago. I haven't noticed much difference.
But my iron stores were low, so last month was iron infusions and the past 9 days has been a flare up. Liquids only today and it's the best I've felt in a week.
So maybe they're not the same and the brain fog kept me from noticing?
I hope it works out well for you, whatever happens.

 

[kiltubrid]

Oh, so sorry to hear that, Paddywack! My decline on the biosimilar, Renflexis, was over a six-month period, so it you've been on it a year, maybe this is just a fluke. I hope you get back in remission feel better soon but, if you don't, maybe your doctor will want to change you back to Remicade, too.

I just had my first Remicade infusion of the new year so everything seems fine, but I will have to get permission to stay on it every year.

 

[paddywack]

Oh, so sorry to hear that, Paddywack! My decline on the biosimilar, Renflexis, was over a six-month period, so it you've been on it a year, maybe this is just a fluke. I hope you get back in remission feel better soon but, if you don't, maybe your doctor will want to change you back to Remicade, too.

I just had my first Remicade infusion of the new year so everything seems fine, but I will have to get permission to stay on it every year.

I had my infusion this past Tuesday. I don't know if it's related or not, but I suspect I've got a touch of pancreatitis going on. SMH. It never ends.

 

[Minibiker]

My insurance says no to a lot of my meds... My doctor tries to fight for me but it doesn't always work... If are insurance company are so smart then why do we need doctors? I suffer so much unnecessarily because of insurance. Not right...

 

[awoenker12]

Well, about a week ago, I heard from my GI doctor and he firmly believes that since my condition has been so stable, that they will go ahead and switch me to Inflectra.

When I had my labs done back in January, the results were the best they have been ever since I was first diagnosed 9 years ago. My sedimentation rate was the lowest it has ever been in 9 years and my iron was the highest it has been in 9 years.

I have my first infusion of Inflectra on Thursday. I will be beyond pissed if Inflectra doesn't work and I flare again.

 

[Lisa]

Well, about a week ago, I heard from my GI doctor and he firmly believes that since my condition has been so stable, that they will go ahead and switch me to Inflectra.

When I had my labs done back in January, the results were the best they have been ever since I was first diagnosed 9 years ago. My sedimentation rate was the lowest it has ever been in 9 years and my iron was the highest it has been in 9 years.

I have my first infusion of Inflectra on Thursday. I will be beyond pissed if Inflectra doesn't work and I flare again.

Best of luck and let us know how you make out.
I’d be royally pissed too if it isn’t as effective!!!

 

[awoenker12]

Will do!

 

[awoenker12]

It's been two days since I've had my infusion. So far so good. I think the next week or two I'll have to monitor extra closely in case by any chance I'll flare. I think once a week or two passes by and I get blood work done, I'll feel better especially if the blood work turns out to be really good again.

 

[awoenker12]

Not good news. I had my bloodwork done yesterday and the results were not good at all. My overall general results were ok, but the inflammatory markers were the highest they've been in over 3 years. The C-reactive protein was 3.1 mg/L. A normal level is less than 1.0 mg/L. Back in January, my C-reactive protein was 0.7 mg/L. Three years ago when I was flaring, the highest it ever was was 1.8 mg/L.

My sedimentation rate was also the highest it's been in 3 years. From my results, my sedimentation rate was 43 mm/hr. Normal values are typically 20 mm/hr or less. Back in January, my sedimentation rate was the lowest it's ever been- 20 mm/hr. Three years ago when I was flaring, my sedimentation rate was 50 mm/hr.

Overall, I feel pretty decent. I have noticed that my stools have not been that great and have been pretty mushy and borderline diarrhea some days. But I don't have any cramping or other signs of a flare. I'm not sure if this means that the Inflectra is working for me? Or maybe it's because I am due to go in for another infusion (my last infusion was May 20th and I'm scheduled for another one July 8th).

 

[Jo-mom]

Hi awoenker12 - sorry that your results aren't as good. Could it be though that you just need another adjustment on your medication - perhaps closer frequency or higher dose? It might not be related to the switch to biosimilar. Did your doctor recommend anything at this time? Although you are scheduled for another infusion soon, you should not have any change in your bowel habits if you have the correct dose. Have you had your blood levels for the drug measured lately?

 

[my little penguin]

Talk to your Gi
Even if you feel ok on the outside
Inside (bloodwork and other tests ) may show other more inflammation going on .
It may be frequency or maybe the drug

when insurance insisted Ds go to every 8 weeks on Stelara from every 4 weeks
Doc tried every 6 weeks
Markers in stool went up first time in 4 years as well as symptoms
Please let the Gi know before the next infusion

 

[awoenker12]

Hi awoenker12 - sorry that your results aren't as good. Could it be though that you just need another adjustment on your medication - perhaps closer frequency or higher dose? It might not be related to the switch to biosimilar. Did your doctor recommend anything at this time? Although you are scheduled for another infusion soon, you should not have any change in your bowel habits if you have the correct dose. Have you had your blood levels for the drug measured lately?

Didn't think about the dosing. I have been fine with the same dosage for the past 3 years. We did decide that 7 weeks works better than 8. I'm supposed to see my GI doctor on July 13th, but I'm gonna see if I can call him after this weekend to discuss this. And they didn't check for the levels of medication .

Talk to your Gi
Even if you feel ok on the outside
Inside (bloodwork and other tests ) may show other more inflammation going on .
It may be frequency or maybe the drug

when insurance insisted Ds go to every 8 weeks on Stelara from every 4 weeks
Doc tried every 6 weeks
Markers in stool went up first time in 4 years as well as symptoms
Please let the Gi know before the next infusion

That's exactly why I want to get this straightened out sooner rather than later so that I don't flare up like crazy again. I'm guessing it's the medication, but I'll see what my doctor thinks when I call him after this weekend. I'll keep you guys updated.

 

[awoenker12]

Things keep going downhill. Yesterday, I called my GI's office telling them what is going on. They suspect my level of medication is low and they want me to ask the infusion center to do a blood test before my infusion tomorrow to check the level of medication. What I worry is that they'll find out that my level of medication is normal and don't do anything about it. The GI office was supposed to call me back today, but I haven't heard anything from them.

Also, I'm having diarrhea just about every day now. I've also had a low grade fever (roughly 101°F) for about 2 days now along with a headache that comes and goes. Also, I can't sleep at night due to the headache/fever unless I take a Tylenol.

 

[Jo-mom]

My son had the same symptoms as you did when his levels were too low. His blood test revealed almost zero levels. He had to up his dose and frequency and has been doing well since (this happened twice btw) - he went to a flare between his infusions. I suspect this is happening to you. When was the last levels test done on you? I think you will feel better after tomorrow's infusion and you will have answers shortly after that to figure out what the next plan should be. Feel free to PM me if you want more details of my son's experiences. Good luck. I have a feeling it will work ot for you.

 

[awoenker12]

Yeah, the last time I got my level of medication checked was May 2019 and that was when I was on the Remicade. I kinda hope they say the levels are low. It's an easy fix and all they would have to do is increase dosage or frequency.

 

[Jo-mom]

@awoenker12 - just checking in. Are you feeling better? Let us know how you are doing and when you get the results of your blood test.

 

[awoenker12]

@Jo-mom - Definitely feeling a lot better. Got my infusion done on Thursday and they checked for my level of medication beforehand and they never said anything so I'm assuming the levels of medication were normal? Or maybe it takes a few days to get the results?

But anyways, my stools are looking a lot better again and I no longer have a fever or headache. I go in on Tuesday to see my GI doctor.

 

[Jo-mom]

That's great. I have a feeling that your levels will come back too low and your GI will have to adjust your dosage. It's a good sign you are feeling better - means the drug is still effective. Glad you have an appt with your GI soon as he can recommend what needs to be done. Keep us posted.

 

[Lisa]

@Jo-mom - Definitely feeling a lot better. Got my infusion done on Thursday and they checked for my level of medication beforehand and they never said anything so I'm assuming the levels of medication were normal? Or maybe it takes a few days to get the results?

Glad to hear you are feeling better - and yes, it takes at least a few days to get results back...I know my Dr office has to send the sample out to LabCorp to get tested for Remicade levels. all other blood work goes directly through the hospital lab.