Biologic choices

[RotgutRedbeard13]

So I'm officially diagnosed and need to choose a treatment. I've definitely chosen the biologic route and have three options available to me.

Here's my thoughts:

Humara - This seems like the tried and true choice. Looking through the documentation, the possible side effects aren't too scary. I'm not too thrilled about the frequency, but I imagine I'll get used to it.

Remicade - Sounds like there's a higher chance of needing to fine tune the dosage. The infusion doesn't sound fun, and again, the frequency isn't the greatest.

Stelara - Once every 8 weeks sounds great, but it's new and it's got some scary potential side effects. "Reversable" syndrome that may include seizures, loss of sight, and altered thinking!? Yes it's rare, but yikes!

Any thoughts from folks with experience? More than likely I'm going to make a decision by the end of tomorrow, but any info would be helpful.

 

[ronroush7]

Hi. Everyone is different. I had a bad reaction to Remicade but i think that is because i took myself off of it and by the time i was put back on it i had built up antibodies. Neither Stelara nor Humira worked for me but like I said everyone is different. There are others on here who have had success with some of these biologics. Keep us updated.

 

[More Than Pickles]

I've been on Remicade since November. I think I'm starting to build anti bodies or need an increase in dose, have added methotrexate recently to help it work better. Other than that, it's a miracle drug to me. The infusion is no big deal, ranges from 3-6 hours depending on where I've had it done, every 6 weeks. I like that it's done for me, rather than Humira, that's self injected. Both have benefits I'm sure. Remicade works fast, within a week I felt better. Doesn't give me any side affects. Hope this helps. Best of luck.

 

[Bufford]

I tried Remicade and had to go off of it due to a bad reaction that left me with Lupus like symptoms. I found that the infusions were not difficult. They had wifi to keep me occupied, the needle didn't hurt, they provided cookies, water and juice.
Having said that Biologics are one route of many treatments. I have since gone to minimal meds and have gone the natural route to maintain a reasonable level of remission.

 

[my little penguin]

Ds has been on remicade and humira since age 8
Remicade he had an allergic reaction to(but is allergic to a lot of drugs foods etc..)
So no one was shocked by this

Humira he has been getting for over 5 years and has worked well for his Crohns
He also takes mtx for arthritis

Humira ca take 3-6 months to be effective though

 

[Scipio]

If I were making the choice I'd start with Remicade. There have been a couple of studies published in recent years showing fewer subsequent, surgeries, hospitalizations, etc. in Remicade patients than in Humira. In other words, better success and fewer complications. On that basis I'd try Remicade first and keep Humira and Stelara (and Entyvio) as back-up options if and when the Remicade fails.

 

[RotgutRedbeard13]

Thank you all for the input! I'd like to look into those recent studies, but I also feeling like I'm just putting off the decision.

It sounds like it's a "Just pick one" situation.

 

[Scipio]

Here are the studies I referred to:

https://www.ncbi.nlm.nih.gov/pubmed/26865349

https://www.ncbi.nlm.nih.gov/pubmed/27058635/

 

[More Than Pickles]

Have you considered that your insurance may not cover all the options you are looking at? When I was diagnosed, my doctor wanted to start me on Cimzia, but my insurance (Aetna) denied coverage 5 times. The alternatives given were Remicade or Humira. My doctor felt Remicade would provide the quickest relief. I'm glad it turned out the way it did, but at the time I was distraught that my insurance would deny a medication my doctor prescribed to treat me.

 

[RotgutRedbeard13]

Thanks for the links Scipio!

Good looking out More Than Pickles! Luckily the three options they gave me for biologics are all covered by my insurance. Still expensive but less so than without insurance.

 

[ronroush7]

Yoiu might want to research remistart for help with paying for Remicade if that is the one you decide on. I can't remember the name of the program but Humira has a similar program if you are interested. Tagging DougUte.

 

[DougUte]

Hi Rotgutredbeard13. Humira has a program called Humira Complete. https://www.humira.com/humira-compl..._humira_complete_humira_cost_Exact_64Z1812810
It will bring your copay down to $5.00

I am currently on Entyvio. They also have a savings plan. Entyvio Connect. It brings that copay down to $5.00.

 

[Guerrero]

If I were making the choice I'd start with Remicade. There have been a couple of studies published in recent years showing fewer subsequent, surgeries, hospitalizations, etc. in Remicade patients than in Humira. In other words, better success and fewer complications. On that basis I'd try Remicade first and keep Humira and Stelara (and Entyvio) as back-up options if and when the Remicade fails.

I agree, Remicade seems the most effective and a first choice for most GE.
I didnt try it yet as I preferred Humira at the time, easier to take it, you do it at home ec... and less allergic reactions... but now after 3 years i developed strictures again so it was not that effective.
My doc made me switch to entyvio as he wanted to change action mechanism (anti integrin instead of anti tnf).

 

[RotgutRedbeard13]

Thanks for the continued input folks!

I did end up going with Humira and will start on Sunday. I picked up my months worth yesterday from a not so empathetic pharmacy tech.

I didn't realize they couldn't show me how to give myself the shot, but I find it odd they could send me home with it anyway. Luckily my sister is a nurse and she's going to show me.

She reminded me that it suppresses your immune system and I'll need to stay away from sick people, wear masks when going to the doctor, etc. I have a pretty hearty immune system right now, but I'm assuming that all goes to pot once the Humira kicks in.

She then sent me on my way with some words of encouragement. "Hope it works for you. It doesn't work for everyone." I mean, I appreciate the warning but is that necessarily the last thing you want to tell someone after they pick up their first prescription to help them overcome a chronic disease!?

Maybe it's just me...

 

[my little penguin]

Ds has been on humira for 5 years
Including elementary school
Humira suppresses the immune system slightly so your susceptible to opportunistic infection(meaning if you have the flu your more likely to get pneumonia)
But your not more likely to get a cold or other normal bug
No masks needed
Just washing hands and flu shot every year

If you get a bacterial infection humira is typically stopped for abx
But not most viral infections

Humira is very different from folks who say have organ transplants
They must wear masks etc

One is immunocompromised
The other is severely immunosuppressed

Good luck

 

[Maya142]

My daughters have been on biologics for years - through middle school, high school and college. NO increase in infections with biologics. My older daughter is still on Humira and MTX.

We don't do anything special except have them wash their hands a lot. And of course they get the flu shot.

We've had nothing except a cold or two a year, which is what they normally got anyway.

The only time my younger daughter had issues with infections was when she was on Imuran.

 

[More Than Pickles]

You don't overcome a chronic disease

 

[RotgutRedbeard13]

Again thanks for the responses!

my little penguin and Maya142: Your comments put me at ease. It sounds like you both have quite a bit of experience in all of this, so hearing that I should just up my hand washing frequency is good

More Than Pickles: Yeah, I should have worded that differently. Thanks for clarifying. I actually meant something suppress the symptoms.

 

[Guerrero]

Been on Humira for 3 years and never wear masks, not flu shot, nor got opportunistic infections or more colds than normal...
But I developed a slight atopic dermatitis, and my skin and nose were drier than before, that's the only side effects I can report.

There is and increased risk of contracting TB so just be carefull on that, but it's quite a rare disease now...

Enjoy Humira i'm sure you'll overcome most of the symptoms and reach remission soon!

 

[DougUte]

Thanks for the continued input folks!

I did end up going with Humira and will start on Sunday. I picked up my months worth yesterday from a not so empathetic pharmacy tech.

I didn't realize they couldn't show me how to give myself the shot, but I find it odd they could send me home with it anyway. Luckily my sister is a nurse and she's going to show me.

She reminded me that it suppresses your immune system and I'll need to stay away from sick people, wear masks when going to the doctor, etc. I have a pretty hearty immune system right now, but I'm assuming that all goes to pot once the Humira kicks in.

She then sent me on my way with some words of encouragement. "Hope it works for you. It doesn't work for everyone." I mean, I appreciate the warning but is that necessarily the last thing you want to tell someone after they pick up their first prescription to help them overcome a chronic disease!?

Maybe it's just me...

I was on Humira for almost 5 years and in that time I had zero colds and zero boughts with the flu. I found it was not the disaster for my immune system that I had read about. No wearing masks at doctor's offices here. It also put me in a long remission. Over time it became less effective and my GI changed me to weekly injections, but my insurance company would not cover Humira at weekly intervals. We had a battle with the insurance (appeals, etc.) and lost. So I am now on Entyvio. If it wasn't for the insurance company I would still be on Humira.