Inflammatory bowel disease

I have a colostomy since 2016 because of diverticulitis. 

I have had problems this past 6 months . Turns out

I have 3 fistulas and inflammatory bowel disease

Turning into crohn's disease. 

Doctors recommend Remikaid infusion.  If you read

The reviews the side effects are frightening. 

I'm wondering if anyone here has croans, or inflammatory 

bowel disease or if anyone has tried the biologics

Like remikaid or humira.

Thanks.  Asiam

Hi Asiam,

  Crohn's is a subset of IBD, and I'd bet the majority of folks on this site are here because of IBD.  There's a well defined treatment roadmap for IBD that starts with the the simple drugs (i.e., anti-inflammatories) and continues thru the family of steroids, sulfa drugs,and more serious immuno-suppressants, finally ending with the uber-serious biologics.   It seems that more recently most Gastro's get to the more serious meds much quicker than when I was first diagnosed.  All have serious side effects that you may or may not be affected by......it's a crap shoot, so you just grin and take your chances.  Lots of folks are on Humira and Remicade, so there's lots of data now on drug effectiveness and severity of side effects.  There's no reason not to do your homework before you start treatment with either one, and judge for yourself before taking the plunge.  Neither drug works forever.  Some folks develop anti-bodies quicker than others, which render these drugs useless......but results vary by individual.  I've never used Remicade, but have been on Humira since 2014 as a preventative, and still have no anti-bodies present (I check twice a year). They just improved the Humira injection pen by removing the citrate from the drug and using a smaller diameter needle, so the injection now doesn't sting and you don't even feel the needle pierce your skin.  Make sure you have good insurance, as it's expensive.  They accidentally sent me the invoice they send to the insurance company and they charge them $80,000 for a 3 month supply.  That's a new Ferrari in your choice of color each year.  Go Big Pharma!!!

Regards,

Bob

                           $80,000 holy cow!

Hi Torquer,

  Yeah, the funny thing is the company that makes Humira (Abbvie) has a special drug discount program for us Guinea Pigs.......errrr.....I mean "patients", where I only pay a $5 copay for my Humira every 90 days.  But you have to pay the $5.  If you don't the specialty pharmacy won't ship you your next refill.  So all along I'm thinking the price of Humira must be pretty low if they care about $5.  I mean it's been out there for years now and is used to treat everything from arthritis to the common cold.  The patent is also probably up on the formulation as well, so I was thinking it really could be a cheap drug by now.  Shows how stupid I was.  I called Abbvie and gave them a good piece of my mind about both the ridiculous cost of the drug and that stupid $5 copay.  Too bad I actually need the drug or I wouldn't have been so nice.....this time.  With it costing this much I'd bet a generic Humira is in the works for sure.  But yeah, when I pulled that receipt out of the box and read it I almost hit the floor.  What a friggin' racket.  Imagine how those poor folks without insurance must feel to see a bill like that.  I'm sure they double the price for the insurance company, but even $40,000 every 90 days is outrageously stupid.  I'm in the wrong line of work!

later,

bob

Hi Asiam i have crohns as well as my bro and sis both of them are on remicade and only have the flu like symtoms for side affects, i was on humira as my insurance wouldnt pay for remicade and the humira didnt work for me i think due to recovering from ostomy resection surgery my body wasnt fully recovered and the humira was started too soon. I know several people on humira for arthritis and doing well on it.

How to Adjust to Life with an Ostomy with Bruce | Hollister

Thank you. I start remicade tomorrow.  I'm a little 

Nervous as I seem to react to  medication in

General.  So happy to hear about your brother and sister 

Doing so well on remicade. 

I hope things work out for you with humira or

Whatever works best for you. 

Thank you,

Asiam

Hi all,

NOT by any means do I defend the BIG Pharm but I was a Case Manager/Patient Advocate in a large Oncology practice for many Years prior to retiring 3 years ago. That copay card is a benefit to all that use their products and ALL Pharmaceutical companies have them for some, not all, their drugs. It always goes away when the drug goes generic. It isn’t that this is all they are really worth but their give back programs, which is again a benefit to them for tax purposes but they could choose not to do it at all and let us suffer with the cost. There are few financial guidelines-so if you get the drug, your are approved. I collected almost two million dollars a year for these pharma  programs  for chemotherapy drugs for my patients. What a relief it is to them. So if my little private practice collected that much, just think what they are paying out all over the USA! 

Just some food for thought! And anytime you get prescribed with a new drug, search copay cards for it to see it there is one! It can save you a lot of money . Medicare patients do not qualify for them but private insurance does. It is legalities that keep the regulations tight. Another thought is when reading the research on side affects for drug, dig deep. If those symptoms were from studied in the US only, you can rely on them but if those studies were world wide, the results are sometimes convoluted. Meaning, because the us has the FDA requirement to meet, not all countries that use thes drugs have a policing agency so standard of care is not always adhered to and side affects up to death may occur because of it. I know one drug that a copay is not allowed because a foreign country reported death from using it. What the didn’t Report is that they doubled the recommended standard of care dosage. A great researcher, as most of us are can dig a little deeper than label reading and taking that as factual. The RX company is obligated to report all affects from the drug. 

Just some food for thought! 

Puppyluv

Hi Puppy,

  Thanks for that great info!  I can be a bit sarcstic at times, so take what I say with a big grain of salt.  Anytime we can get a drug at a discount it's a good thing, I just get ticked off by the ridiculous price they charge for the drugs in the first place.  And the fact that Big Pharma always seems to stop looking for a cure when they find something that can manage a condition instead.  Let's face it.....a cure is a one time thing........treatment can be forever.  Which one would make you the most money.  So yes, I'm glad I only have to pay $5 for a 3 month supply of Humira.......but I shouldn't have to pay anything.  They need that $5 copay like a hole in the head.  So I see it as almost a slap in the face, rather than a help.  But I get your point!  I'm sure it really does benefit many folks........so I'll shut up.  Also great insight into researching side-effects........thanks for that. 

  I've always said if you wanted to know what really goes on in the medical community you need to do it via word of mouth.  You just proved my point.  If you want to know which docs to avoid you need to become friends with some nurses or other docs.  To better understand the drug side of things someone like you is a great friend to have.  I've never found what's printed to be a reliable source of true information.  You'll never get the whole picture without tapping into the personal experience side of things.  Thanks again.

regards,

bob

I was on Remicade for 12 years.  I go way back to the days that the infusions were at 0 weeks, 2 weeks, and 6 weeks from Day 0 (Week 0) and then that was it.  In theory your body was supposed to have forgotten how to make the faulty T-cells and you'd be sympom free from then on.

Fortunately they figured out that it was a maintenance dose kind of drug and I was on it every 8 weeks.  I felt a little off on infusion day but that was probably due to the pre-meds.  It was about 10 years before I needed the pre-meds.  Anyway, within a few days of getting my infusion I felt better than I had in years.  I had energy and I had an appetite.  Around week 7 I started feel what I called "punky" but then I was back to being 100% a day or two after infusion.

I had only 1 Crohn's surgery during those 12 years and that was to deal with a fistula that had popped up prior to Remicade.

Since I've had Crohn's since I was 17 and had a bunch of surgeries when I was 21 I always got the best insurance my employer offered.  Remicade was $5,000 a shot back then but I only paid $50 at the GE.  The hospital's infusion center added all kinds of fees that jacked the price up to $500 and the service was worse!

I did Stelara later and as others have said Centicore had a program where they'd reimburse your co-pay less $5.

So do your homework.  If they want to much to infuse you look for a cheaper infusion center.  If the manufacturer has a program to lower the fee then look closely.

Note that if you have a Flexible Spending Account you CANNOT then go to that for further reimbursement.  That could get you banned from the company's rebate program.

I hope Remicade helps you as much as it helped me.

Dave

Thank you Dave.  I started the remicade and so far

I feel good.. Maybe a little tiredness but thats it.

So thank you for your reply helps me not feel so

Concerned with things.

Thank you, it's so helpful to hear of other people 

On remicade and doing well.  I'm not going to

Google remicade anymore.  🤗