Is my strategy right with Remicade?

[Kancer]

I have had 3 fistulas since the start of this year. I got an MRI done 3 months ago and my general surgeon said the fistula is a bit complicated and referred me to a colorectal surgeon.

I had an appointment with the surgeon today and I finally got the detailed explanation I needed. So 1 fistula is simple and 2 fistulas are complex with a few branches. The surgeon looked at my blood work and MRI and said that surgery shouldn't be my first line of treatment.

He thinks I am still not controlling my flare. I am currently on Azathioprine and I am symptom free and my GI said my blood work was good and disease was well controlled. The colorectal surgeon suggested I go on biologics (Remicade?) and hope it closes the fistula.

I am clearly not interested in taking Remicade since the side effects are't worth it and Azathioprine seem to be keeping my disease in check.

Should I just take Remicade till my fistula closes (and maybe a little but longer) and stop taking it and continue my Aza. I know I will likely build anti-bodies to Remicade if I stop but I do not want to be on this drug for long since Aza is doing its work and the risk doesn't seem worth it. I just want the fistulas GONE!

 

[ronroush7]

If you take it for a while and then stop, you could have a flare. That is what happened to me.

 

[Guerrero]

I'd prefer remicade or another biologic than risking surgeries or fistulas.
Also consider azathioprin as a risky medicine too...
It's your call, but be sure you value and assess correctky the risks and rewards with your doctors

 

[Scipio]

The side effects of Remicade are minor compared to the side effects from Crohn's that is not under control - namely fistulas, strictures, blockages, and surgery. If you don't want to be repeatedly dealing with all those things you evidently need stronger medicine. The symptoms frequently do not match with what is really going on in the gut. Azathioprine alone is not doing the job for you. If it were you would not be getting these fistulas.

 

[Bufford]

If it isn't broken then don't try fixing it. If the Aza is working to your level of acceptance I wouldn't go off of it and onto Remicade. Save the Remicade for a bad flare should it arise. You could end up developing antibodies by going on it and then off.

You know your body better than anybody else including the surgeons.
I went on Remicade after my doctor recommended it. I wasn't having any issues out of the ordinary. I ended up rocking the boat and putting myself through a lot of unnecessary misery when Remicade went against me causing medicine induced Lupus side effects. It took a better part of a year before my body returned to normal. I knew something was wrong after the second infusion, but things went poorly after the 3rd with all kinds of grief.
After that treatment I have been seeking alternatives that include taking natural medicines and diet. Much to my surprise these have worked well to manage my Crohn's. I have both respect and fear for treatments after this last one.

 

[Kancer]

The side effects of Remicade are minor compared to the side effects from Crohn's that is not under control - namely fistulas, strictures, blockages, and surgery. If you don't want to be repeatedly dealing with all those things you evidently need stronger medicine. The symptoms frequently do not match with what is really going on in the gut. Azathioprine alone is not doing the job for you. If it were you would not be getting these fistulas.

I actually started Azathioprine after getting the fistula. Previous to azathioprine, I would have fever everyday and the pentasa wasn't helping. Since my I&D of my abscesses, I started Azathioprine. But I believe the abscess was caused by the fistula in the first place.

My GI said some fistulas heal on Aza alone. 6 months in and no difference. I am just not ready for Remicade or infusion-like drugs. I feel Aza is relatively safe to the biologics. (Correct me if I am wrong)

 

[my little penguin]

All drugs have Potential side effects
I do stress potential
Most do not get any side effects with biologics
Aza alone has a very high rate of lymphoma
Biologics by themselves do not have the same rate
When taken in combination they do have a rate of 6 in 10000 for T cell lymphoma (deadly kind)
The risk is significantly lower when biologics are taken on combination with mtx
Most kiddie GI will not prescribe aza or 6-mp for kids anymore
They have switched to mtx
And biologics

Remicade has a high success rate for healing fistulas
I get not wanting to take biologics
Tylenol has a high risk of liver failure Steven Johnson Syndrome and death
But is given to infants since the benefits far outweigh the risks

Ds has been on biologics since age 8
And is now almost 14
He has had far more side effects while on 6-mp than biologics
Went through all of elementary school and middle school without extra infections
Was barely sick

Good luck in your decision

 

[my little penguin]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2925472/

 

[Kancer]

Most do not get any side effects with biologics
Aza alone has a very high rate of lymphoma
Biologics by themselves do not have the same rate
When taken in combination they do have a rate of 6 in 10000 for T cell lymphoma (deadly kind)
The risk is significantly lower when biologics are taken on combination with mtx
Most kiddie GI will not prescribe aza or 6-mp for kids anymore
They have switched to mtx
And biologics

Ds has been on biologics since age 8
And is now almost 14
He has had far more side effects while on 6-mp than biologics
Went through all of elementary school and middle school without extra infections
Was barely sick

Good luck in your decision

Thank you so much for letting me know. I thought biologics are deadlier than Azathioprine. I am not sure if I am comfortable with the injecting myself part. Remicade requires you to get infusions in the hospital right? The hospital I go to basically gives away medication at $1 except for biologics. The government here has way more money than they can spend so they are nice with the medication charges but for certain reason, they only sudsidize biologics when all other treatment fails and/or you have financial difficulties.

I sadly don't qualify under financial difficulties since my parents income is higher than their threshold. And I just graduated and each infusion would cost my entire month salary and I don't want to ask my parents for funding.

On the bright side, my colorectal surgeon said to opt for biologics and wrote a referral to make the government provide 100% subsidy which I have to give to my GI next month. The surgeon just feels like he is wasting both our times by surgery since he is positive that fistula surgery would fail and reoccur

 

[Sophabulous]

Yes, azathioprine can increase the risk of lymphoma and skin cancer but when I was given the figures I think it was still only 3 point something (I want to say 3.6?) people in every 10,000 will develop it on the medication. That was good enough for me as I was sick of steroids and liquid diets. I'm also supposed to go onto remicade soon, I've just been sent the paperwork to get bloods done to check for TB. I'm not worried about it, after the aza I'm already in for a penny in for a pound the way I see it! Good luck x

 

[my little penguin]

Remicade is infusion through iv at the hospital
Every 6-8 weeks
Humira is injection at home by you every 2 weeks to every 5 days

 

[Guerrero]

If your fistula dont heal with aza then you qualify for biologics as aza failed.
Now if your fear are side effects, consider risks of having fistulas, possible strictures etc with inflammation going on plus azathioprin that basically kill all your white cells so you can contract infections etc.. while biologics only regulate the tnf response.

I understand when you are young you dont want a treatment with IV at hospital... with possible side effects, but in my opinion surgeries are more scary (and it took time for me too to make that decision, i was thinking the same as you..). Talk to your GI if humira could be an option too, as you'd do injection at home every 2 weeks (very easy and almost no pain with the new pen), its even better than takin aza every day and more chance to heal than aza.

 

[Kancer]

Can we really conclude Aza failed even if it has eliminated all the Crohn's symptoms? I only started Aza after a bad flare and multiple abscesses. By the time I started Aza, I already developed fistulas.

I understand only Remicade helps heal fistulas but not Humira? I have lived with the fistula for nearly 8 months and the sad realisation is sticking gauzes has actually started feeling normal. It is just plain depressing to even think of it.

I just want these gone hence why I thought I am willing to risk a bit going on remicade for a few infusions and gradually stop after the fistulas heal. Only issue I have with Aza is the frequent common colds I end up having and occasional throat infections

 

[Kancer]

Another weird reasoning I am having for going on Remicade is if it ends up being fatal for me, at least every thing would end in a dignified manner

 

[stillnotregistering]

I haven't tried Remicade, but did try Humira for good long while ... it gave me sepsis, a known, serious side effect.

Remicade is made from mice DNA, Humira from human DNA, is reason why I declined Remicade. IMO, these are experimental drugs, and whoever said the side effects are mild compared to fistula's etc. ... they are extremely dangerous drugs if you research them.

And, NONE of them have a very good track record re Crohns. When you correct for placebo effect (about 30%) and spontaneous remission (20%) in long term trials, their success rate totally blows, and it's temporary, always temporary.

The therapy with the greatest success rate, worldwide, is AMAT therapy. I have sworn off all autoimmune therapy in favor of AMAT therapy which I intend to start soon.

Never forget, your doctors are treating you based on a THEORY about the cause of crohns. The very latest research (human para tuberculosis foundation) puts their precious theory in serious question.

In my opinion, Crohns is caused by a bug, and if so, autoimmune therapy is largely ineffective, if not counterproductive.

I hope I don't get banned for this, post. To be clear, I'm not suggesting you not to take your drugs, or ignore your doctor's advice. I'm saying I stopped mine after nine years because they only made things worse.

Good luck.

 

[Kancer]

I haven't tried Remicade, but did try Humira for good long while ... it gave me sepsis, a known, serious side effect.

Remicade is made from mice DNA, Humira from human DNA, is reason why I declined Remicade. IMO, these are experimental drugs, and whoever said the side effects are mild compared to fistula's etc. ... they are extremely dangerous drugs if you research them.

The therapy with the greatest success rate, worldwide, is AMAT therapy. I have sworn off all autoimmune therapy in favor of AMAT therapy which I intend to start soon.

Never forget, your doctors are treating you based on a THEORY about the cause of crohns. The very latest research (human para tuberculosis foundation) puts their precious theory in serious question.

In my opinion, Crohns is caused by a bug, and if so, autoimmune therapy is largely ineffective, if not counterproductive.

I hope I don't get banned for this, post. To be clear, I'm not suggesting you not to take your drugs, or ignore your doctor's advice. I'm saying I stopped mine after nine years because they only made things worse.

Good luck.

I actually agree with you. I think these medications we are taking induces remission in the short-term but say 40-50 years down the line, I could suffer with something worse. I am only 20 right now.

I am trying to see if I can stop these medication but the only issue is the damn fistulas. Btw, what is AMAT therapy?

 

[Bufford]

I haven't tried Remicade, but did try Humira for good long while ... it gave me sepsis, a known, serious side effect.

Remicade is made from mice DNA, Humira from human DNA, is reason why I declined Remicade. IMO, these are experimental drugs, and whoever said the side effects are mild compared to fistula's etc. ... they are extremely dangerous drugs if you research them.

And, NONE of them have a very good track record re Crohns. When you correct for placebo effect (about 30%) and spontaneous remission (20%) in long term trials, their success rate totally blows, and it's temporary, always temporary.

The therapy with the greatest success rate, worldwide, is AMAT therapy. I have sworn off all autoimmune therapy in favor of AMAT therapy which I intend to start soon.

Never forget, your doctors are treating you based on a THEORY about the cause of crohns. The very latest research (human para tuberculosis foundation) puts their precious theory in serious question.

In my opinion, Crohns is caused by a bug, and if so, autoimmune therapy is largely ineffective, if not counterproductive.

I hope I don't get banned for this, post. To be clear, I'm not suggesting you not to take your drugs, or ignore your doctor's advice. I'm saying I stopped mine after nine years because they only made things worse.

Good luck.

I completely agree, these treatments are experimental at best. I gave Remicade a good try, I should have gone off of it upon the second infusion, but in good faith took a third infusion and it was probably the scariest worst drug reaction I ever experienced.

Since Remicade I am terrified of these treatments. I took it upon myself to re evaluate my diet, and try alternatives. For me Turmeric is working wonders. I will leave these chemical treatments as a last resort.

I personally believe everything has a reaction, for the benefit these treatments provide, just be aware that these may do irreversible damage to internal organs like the liver and kidneys. I think of these treatments as burning the candle at both ends. Having said that for some, they have responded well, but long term side effects are largely unknown at this time.

 

[Guerrero]

Well Remicade has been used since 1998 so we have 20 years of history we can't say it's still experimental. For sure it carry some risks that need to be monitored but it has less long term side effects than steroids for example.

AMAT therapy is quite new and it has not proven completely its efficacy yet (few studies compare to remicade), besides taking all those antibiotics is clearly not without any risks...

 

[stillnotregistering]

Well Remicade has been used since 1998 so we have 20 years of history we can't say it's still experimental. For sure it carry some risks that need to be monitored but it has less long term side effects than steroids for example.

AMAT therapy is quite new and it has not proven completely its efficacy yet (few studies compare to remicade), besides taking all those antibiotics is clearly not without any risks...

It remains experimental because:

They are messing with an immune system they don't understand, trying to address a disease they don't understand, based on a THEORY about its cause.

Just because it's been used for 20 years doesn't mean anything. Google a list of recalled drugs, some were on the market as long or longer.

Finally, it has an unacceptable success rate. Very low.

It is a very dangerous drug.

The primary abx, used in AMAT therapy is far safer, far more effective: clofazamine.

Dr. Barody achieves 85% remission rate, highest in the world, BY FAR, using this drug. The WHO lists is as essential and one of the safest abx known. It is highly effective against leprosy, caused by a close cousin of MAP. They give it away for free in Africa to treat lepers.

I wonder, then, why they pulled clofazamine from market in 2000? Even though it's totally legally, safe and effective, no doctor in the USA, and only a handful in the world will prescribe it, even if it were available.

So what's really going on here?

 

[Guerrero]

Didn't know this clofazamine drug, but i just read on wikipedia it has huge side effects, and is immunosuppressive too...

I dont buy the conspiracy theory.. if pharma could make money with a more effective drug - less expensive - i'm sure they'd test it and sell it. Who knows why the millions dollar they spend on researches don't go there... probably cause they dont expect this drug could be as effective and a blockbuster as biologics.

 

[Bufford]

Well Remicade has been used since 1998 so we have 20 years of history we can't say it's still experimental. For sure it carry some risks that need to be monitored but it has less long term side effects than steroids for example.

AMAT therapy is quite new and it has not proven completely its efficacy yet (few studies compare to remicade), besides taking all those antibiotics is clearly not without any risks...

I would say that we are all guinea pigs in a big experiment. Crohn's has no cure at this time, and for the most part controlling it has been a guessing game. Remicade has been around for 20 years which is a drop in the bucket time wise. We have yet to see what this drug and others will do over the life time of patients who take them.
Crohn's is a very serious health condition, and as patients we have to make decisions that could help or produce an irreversible negative outcome. Discussions with your doctor are not ones to take lightly, they are about life and death whether its drug therapy or surgery.

 

[Lucy7]

History has shown that when someone says it is this way not that way, one day his position will be replaced by another (and again by another).

Those are only positions, yours his etc. If diseases are like what we observe ourself from our society, there is a bit of everything in a disease, bugs, immune system, etc. If it wasn't the case, the cure would have already existed.

I understand little about statistics, but what I can say, is that everytime some doctor come with a treatment, it always is very efficient prior to submitting it to what they call larger studies... efficiency then falls.

I think we should give room to every medicines, a little bit of each... lower doses of humira, lower doses of 6mp, lower doses of everything rather than standard or high doses of one...

In food there is little bit of wide range of vitamins, etc... not one type... there are fibres, proteins, fats etc...

HUGE side effects? No need for drama. Relative to what? I guarantee you Remicade is far more dangerous. Remicade makes top ten dangerous drug lists.

Clofazamine side effects CAN be at times be dangerous, ANY antibiotic CAN.

But compared to most, the side effects are minor, hardly HUGE. More important it's THE most effective drug against MAP.

WHO lists it as "essential" because it has an excellent track record for safety and because it is very effective against mycobacteria.

You don't understand the conspiracy. They wouldn't make more money using abx, AMAT therapy. The would LOSE money big time - billions.

They already make billions off Crohns alone using dangerous spectrum of drugs trying to beat an "autoimmune disease." A single shot of Humira costs $2000, they are doing quite well tyvm. Crohns is increasing 400% last 20 years. It's now a bona fide cash cow for the medical industry. Never lose sight of the fact that it is a for profit industry, no different than General Motors.

Regardless, doctors are still GUESSING it's autoimmune, and their drugs have lousy remission rates, all of them. And they don't keep up on the research, so their "guess" looks less reliable with each new AMAT study.

Make no mistake, Prednisone, 6MP, Humira etc. are all FAR more dangerous drugs, than clofazimine, and that's a fact.

You are betting your doctors are right about their THEORY. We all have that choice. Meanwhile they conduct their ongoing research on your body with their expensive "therapies." But no one's really analyzing it.

I have already bet my life that they are WRONG with their theory, and so have an increasing number of other crohns sufferers. Why? Because all the latest research points rather conclusively to this: Crohns is an infection, caused by MAP. If so, immunosuppression could be, and likely is, contratindicated.

Again, Clofazamine, 85% remission rate when used with proper regimen, with several known, documented complete cures. Clofazamine fights infections, any immune effects are secondary. The goal is to kill the bug.

Occam's Razor, my friend.






You probably think they're actually looking for a cure for cancer.

 

[Guerrero]

I would say that we are all guinea pigs in a big experiment. Crohn's has no cure at this time, and for the most part controlling it has been a guessing game. Remicade has been around for 20 years which is a drop in the bucket time wise. We have yet to see what this drug and others will do over the life time of patients who take them.
Crohn's is a very serious health condition, and as patients we have to make decisions that could help or produce an irreversible negative outcome. Discussions with your doctor are not ones to take lightly, they are about life and death whether its drug therapy or surgery.

Crohn's doesnt lead to death with actual medicine... maybe it does without medication. I hope you will feel great without biologics, and maybe a non risky cure will be found asap, but many members here, included me,relate on those 'dangerous' drugs and know very well how bad they could be without those treatments and of course would prefer to avoid any side effect.

 

[Guerrero]

HUGE side effects? No need for drama. Relative to what? I guarantee you Remicade is far more dangerous. Remicade makes top ten dangerous drug lists.

Clofazamine side effects CAN be at times be dangerous, ANY antibiotic CAN.

But compared to most, the side effects are minor, hardly HUGE. More important it's THE most effective drug against MAP.

WHO lists it as "essential" because it has an excellent track record for safety and because it is very effective against mycobacteria.

You don't understand the conspiracy. They wouldn't make more money using abx, AMAT therapy. The would LOSE money big time - billions.

They already make billions off Crohns alone using dangerous spectrum of drugs trying to beat an "autoimmune disease." A single shot of Humira costs $2000, they are doing quite well tyvm. Crohns is increasing 400% last 20 years. It's now a bona fide cash cow for the medical industry. Never lose sight of the fact that it is a for profit industry, no different than General Motors.

Regardless, doctors are still GUESSING it's autoimmune, and their drugs have lousy remission rates, all of them. And they don't keep up on the research, so their "guess" looks less reliable with each new AMAT study.

Make no mistake, Prednisone, 6MP, Humira etc. are all FAR more dangerous drugs, than clofazimine, and that's a fact.

You are betting your doctors are right about their THEORY. We all have that choice. Meanwhile they conduct their ongoing research on your body with their expensive "therapies." But no one's really analyzing it.

I have already bet my life that they are WRONG with their theory, and so have an increasing number of other crohns sufferers. Why? Because all the latest research points rather conclusively to this: Crohns is an infection, caused by MAP. If so, immunosuppression could be, and likely is, contratindicated.

Again, Clofazamine, 85% remission rate when used with proper regimen, with several known, documented complete cures. Clofazamine fights infections, any immune effects are secondary. The goal is to kill the bug.

Occam's Razor, my friend.






You probably think they're actually looking for a cure for cancer.

Clofazamine is distributed by novartis. Why they dont commercialize for crohn's it and prove its effective for crohn's? To let humira and remicade make more money than them?

I guess i'll never convince you anyway... they are doing research and test on MAP so time will say if crohn's can be cured with antibiotics only

 

[JaimeM]

I've been on Remicade for a long time and I absolutely love it. I tried to go off it during my pregnancy and flared, with fistula development. I was put on azathioprine and remicade then. Azathioprine has been far worse than the remicade. My drs also said that remicade is the best for clearing up fistulas. Mine were completely cleared up after about 6 months on remicade. Remicade has been my life saver. Without it I wouldn't be able to live the normal life that I do. I work in the medical field as an xray tech, I volunteer as an AEMT on our ambulance service and I have a 3 year old son. Remicade allows my busy lifestyle. I was severely flared for over a year. It took me 6 months to begin to feel better. I have no side effects aside from the fact that I'm pretty tired the day of infusion. And yes someday it may cause some other disease, but would I rather live now and die later or never really live?

 

[Layla]

I have zero side effects from Remicade but I'm allergic to Aza which gives me extreme anemia so there you go.
You won't know until you try it but if you do go for remicade and it heals the fistula's I suggest you do a lot of research and think long and hard whether you want to risk going off it. But that's not something to worry about now, first get the fistula fixed and worry about the next steps later I would say.

 

[Bufford]

Crohn's doesnt lead to death with actual medicine... maybe it does without medication. I hope you will feel great without biologics, and maybe a non risky cure will be found asap, but many members here, included me,relate on those 'dangerous' drugs and know very well how bad they could be without those treatments and of course would prefer to avoid any side effect.

I hope for your sake the meds work out for you, I've been on most of these drug treatments on this 40 year Crohn's rollercoaster ride living with its ups and downs. I used to flare like crazy when I was younger, but it seems to have slowed down as I approach 60. As such diet and non drug therapies such as Tumeric and ginger work better and provide a better quality of life without the nasty side effects.

 

[Kancer]

Has anyone on this forum ever reported fatal conditions or even death due to biologics? I mean actual person on this forum.

 

[Lady Organic]

I asked my GI if any of his patients died because of a Biologics and his answer was no. he's been practicing for 10 years or so and biologicas have been around for 15-20 years. But he has had colleagues who had some deaths (he didnt say how many). He said most (or all, dont remember his wording) cases were very sick hospitalized patients. Opportunistic infection spreads through the body and turns fatal.

have you made a decision concerning remicade? is your fistula episode over?

 

[Kancer]

I asked my GI if any of his patients died because of a Biologics and his answer was no. he's been practicing for 10 years or so and biologicas have been around for 15-20 years. But he has had colleagues who had some deaths (he didnt say how many). He said most (or all, dont remember his wording) cases were very sick hospitalized patients. Opportunistic infection spreads through the body and turns fatal.

have you made a decision concerning remicade? is your fistula episode over?

Sorry, I missed this comment. I've finally got approved for Remicade after 3 years with my GI. Been living with fistulas for 3 years... how time flies!

Going to go in with my CRS to see if I would need a draining seton placed (I would prefer not to) and eventually starting Remicade afterwards. My current plan is to evaluate how the infusions go and if my fistulas close and eventually wean off it and continue with Azathioprine. But given my luck, I anticipate I am probably on Remicade for life.

 

[my little penguin]

Glad you got it approved And can finally get your fistula fixed
As far as “for life part “
Ds was supposed to be on remicade for life
It last 8 months
Then humira “for life “ -that lasted 5 years
He is now on Stelara and we no longer refer to any med as for life
Hopefully remicade works for you as long as possible
Some get 10 years out of it
Most don’t
Good luck

also they don’t wean biologics
It’s not like steriods
Ds had to stop humira more than once for other things which is probably why it stopped working

 

[Kancer]

Ds had to stop humira more than once for other things which is probably why it stopped working

May I ask why it had to be stopped? Was it due to side effects? To be honest, I was happy when I was informed it was approved and funded by the government after waiting nearly 3 years. But, then the paranoia came back?

When I started Azathioprine, I was extremely worried. (touchwood) It's been 3 years and I've not any side effects but it hasn't gotten me to remission either - Been steroid dependent. I am exploring all options including naturopath as my exit strategy for biologics

P.S. I am thankful for a forum like this. While I am not very active here as I try my best to not think about my disease, I am glad a community exist