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Worried about long term use of remicade, need suggestions for my future

Heeeey my fellow chronies, i'm Julian from Australia, Melbourne and 21 years old. This is my first time posting here, and i'm desperately in need of some advice with how i should approach this. Before i started remicade i was taking azathiorpine and allopurinol. My gastro doctor told me i have a severe case of crohns disease based off my inflammation via colonoscopy , and my crp levels being around the 80 mark, and Faecal calprotectin being just a little over 1000. My results did not change with this treatment so my doctor was considering remicade because i was battling severe malnutrition, and all the other nasty common symptoms of crohns disease. I was then put on remicade because of how desperate i was, and oh has it been a "miracle drug" for me. It has been 17 months and im almost in complete remission with scopes, crp and faecal calprotectin levels all back to normal and clear. I have experienced little side effects with remicade, so i consider myself lucky. For the first couple of months my doctor recommend i take remicade with a 6mp, because it prevents your body from building antibodies sooner, but this combo effected my liver levels, and my doctor wanted to have a mri of my liver, and found a mild case of PSC (Primary sclerosing cholangitis) a form of liver disease. My doctor took my off 6mp, and my liver levels went straight back to normal, so i stayed on remicade alone. It has truly worked wonders for me and i cant be more thankful for it so far. But i cant help but think about the scary side effects of taking this medication long term. Which bring me back to the title of this thread, im almost in complete remission with my scopes results being clear as normal and with no symptoms. I was hoping i could talk to my doctor about lowering the dose just to minimize risks of long term use of remicade or another alternative someone can give me here :ysmile:. anyone that can reply to this, it would be greatly appreciated, god bless everyone battling this terrible disease.:heart::heart::heart::heart:
 
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Lisa

Adminstrator
I've been on Remicade since fall 2005 (so 13 years now) with few important side effects. In fact, I'm pretty much the healthiest one in my family. Do I get the occasional illness? Yes, but not any worse that others.....

If Remicade is working for you, I would stay on it as long as possible. How often do you get infusions, and do you know what dosage you are on?
 
Hi Lisa, thank you for taking your time to share your experience. I get my infusion every 8 weeks, but unsure about my dose. I want to make an appointment earlier to see my IBD doctor to ask a few questions if there's any tests i need to do regularly to keep check of my health while on remicade because im worried of the worst possible case of getting some sought of cancer/lymphoma or fatal side effect. i completely forget i have crohns disease since on remicade, and just curious if there's any other specialist i should be seeing while on remicade just to keep on top of my health.
Kind regards

:):):)
 

Lisa

Adminstrator
I don't see anyone other than my GI once a year, and my Primary if needed.....

I do get bloodwork done every other infusion, I go every 8 weeks so that is every 4 months bloodwork.....they do the draw when they stat my IV.
 

my little penguin

Moderator
Staff member
The risk of fatal T cell lymphoma is beyond low
To put it in perspective
The average person walking on the street has a risk of tcell lymphoma of
2 in 10000

If you are taking 6-mp/aza TOGETHER woth remicade
Then it moves up to 6 in 10000



In the US at least risk for kids (my kiddo is almost 15)
Been on biologics since age 8

Risk of a kid under 14 dying by
Car 1 in 250
Drowning 1 in 1000

So things we do daily have much higher risks

Add in normal kiddie medicine used in infants
Tylenol and amoxicillin both have risks of Steven Johnson syndrome /liver failure/death
And these are given to every kid at one time or another

We look at risks vs benefit

The benefit of the med heals by kiddos intestine so he avoids surgery
Has a normal growth pattern and no inflammation reduces his colon cancer risk

Discuss with your doc
But lower dose just means higher risk of antibotforming and Crohns flaring
I doubt it equals less POSSIBLE side effect risk

8 years on biologics so far
Scopes look great

No extra illness through lower grades and starting high school soon
Plus has avoided any surgery ;)
Given 75% of kids need surgery woth 5 years of dx
I consider it good

OBJECTIVES
Real-world, prospective, long-term studies in Crohn’s disease (CD) characterizing adalimumab safety data and lymphoma risk were lacking. We present the final results from the PYRAMID registry, which was designed to rule out a doubling of lymphoma risk in adalimumab-treated patients with CD.

Methods
Patients with moderately to severely active CD newly prescribed or currently receiving adalimumab according to local product labels were followed for up to 6 years and analyzed for adverse events (AEs). The registry exposure-adjusted observed rate of lymphoma was compared with the estimated background lymphoma rate from a sex-matched general population in the Surveillance, Epidemiology, and End Results 17 Registry database adjusted for anticipated prior or concurrent thiopurine use in a CD population.

Results
A total of 5025 patients were evaluated (16680.4 PY of adalimumab registry exposure, ≈3 years/patient mean follow-up). Registry treatment-emergent AEs included 4129 serious AEs (n = 1853 [36.9%]; 24.8 E/100 PY), 792 serious infections (n = 556 [11.1%]; 4.7 E/100 PY), and 134 malignancies (n = 116 [2.3%]; 0.8 E/100 PY), including ten lymphomas. The observed lymphoma rate (0.060 E/100 PY) was lower than the estimated background rate (0.084 E/100 PY), and the upper bound of the one-sided 95% CI of the observed rate (0.102 E/100 PY) was lower than double the estimated rate (0.168 E/100 PY).

Conclusions
PYRAMID is the longest prospective adalimumab study in routine clinical practice, with up to 6 years of follow-up. No new safety signals were reported. The pre-specified registry objective of ruling out a doubling of lymphoma risk with adalimumab was met.


Lymphoma Risk and Overall Safety Profile of Adalimumab in Patients With Crohn’s Disease With up to 6 Years of Follow-Up in the Pyramid Registry
Geert D’Haens MD, PhD, Walter Reinisch MD, […]Edward V Loftus MD
The American Journal of Gastroenterologyvolume 113, pages872–882 (2018) | Download Citation




From
https://www.nature.com/articles/s41395-018-0098-4
 

Lady Organic

Moderator
Staff member
Hello, I agree with the others. When a medication is working, its best to remain on it and not change anything that works. It is true we all come to tend thinking we are disease free at some point in our journey and feel we can lower or stop the medication. It may work for some, but it sure doesnt work for everyone, and I was one of those who highly regretted stopping a treatment a few years ago. Disease can back and is harder to manage now. I know now the risk is not worth it. I would really encourage you to remain on your treatment especially considering the fact that you failed a previous standard treatment with Aza and that your CD as been labellled as severe. Wishing you well.
 
Thank you mylittlepenquin for your feedback, that definitely helps with my fear and put things into perspective for me. I'm just curious about how your ibd doctor keeps on top of your sons health while on remicade regarding tests. I get blood tests done every time i get an infusion, and im curious if there's any other tests i should be considering for my doctor to do while on remicade. I appreciate your feedback lady organic, i sorry for what happen in the past regarding getting off your treatment. I will not get off remicade completely, but just want some advice on tests or specialists that can work with my gastro doctor to keep tabs on my health while on remicade.
 

my little penguin

Moderator
Staff member
Ds is currently on Stelara
He was on remicade for all of 8 months before he had an allergic reaction
But keep in mind he has had allergic reactions to foods /drugs and and and
So docs were expecting it
Then in humira for 5 years before it stopped working
Now on Stelara for over a year

Routine Crohns bloodwork
CBC alt ast Crp esr
That’s it
No issues
Remember your immune system is overactive compared to the average person
So this puts it at a normal level

My ibd kiddo gets sick far less than my non ibd kiddo
 
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