Scared of Biologics (Humira/Remicade)

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peregrine

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Aug 28, 2009
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I am a 31 y/o male from Toronto. I was diagnosed with Crohn's last summer after having had abdominal pain and diarrhea for more than a year. I have had Ankylosing Spondylitis for the last 20 years or more.

I can live with the pain of the Ankylosing Spondylitis, but all of the unknowns associated with Crohn's Disease really freak me out.... right now the Crohn's is relatively mild, but since I do not know what is happening on the inside I find it hard to deal with.

I am currently following some alternative therapies such as Curcumin, Robert's Complex, Omega-3, Vitamin D and probiotics. These seem to ease the symptoms but cannot get rid of them entirely.

While I was on a low dose of Entocort (Budesonide) (3mg) everything seemed fine. However, I recently tapered off the Entocort for fear of long-term side effects like osteoporosis. Now I seem to getting more abdominal pain, diarrhea and some weight loss.

My gastroenterologist and my rheumatologist both want me to start taking either Remicade or Humira. They are pushing these as if there is no other option.

To tell the truth I am very scared and very depressed at this option... I keep hearing stories about the potentially deadly side effects. I don't want to start on Biologics only to end up with Lymphoma one year down the road. I know that these side effects are rare, but they are also said to be more common among young men....

When I think about this difficult choice I want to break down and cry... I am married and want a family and the thought of taking a drug that could potentially kill me leaves me feeling so depressed. Does anybody have any advice, or stories about taking Biologics that could help me put my mind at ease? What are the long-term side effects? Has anyone been on them for ten years or more?

Please help me... :depressed:
 
I'm in a similar boat (Crohn's and Ankylosing Spondylitis). Diagnosed last year with AS, diagnosed 20 years ago with CD. Right now the Crohn's is managable, while the AS is badly flaring.

I'm looking at Humira and Enbrel as options. I'll know more when I see a rheumatologist.

Yes, it's scary. But I read of a lot of people's positive experiences here.
 
I am recently facing this as well. I am scared and I have a family. I just tell myself, its not forever its just for now. I mean what if this drug puts you in remission for awhile. I think natural stuff works way better once in remission than during a flare. I have never tried biologics before but Immuran and pred paved the way to my remission. I stay on the immuran for a year and when I came off of it I stayed in remission for a few more years with good diet and supplements. I have fistulas and my GI doc really thinks the remicade will close them up. I am worried about the side effects but I also think taking good care of myself will help lessen my chances of the heavier ones like cancer.

This is my plan for now.

Take drugs for at least 6 months.
Figure out the best diet for me. (I am coming to the realization that wheat is a big no-no for me)
Figure out an easy supplement regime that works.
Wean myself off of drugs and hope for another awesome remission.

Come up with a plan and break it into easy to manage chunks. Your plan may look nothing like my plan when you figure this all out. This is a very individual disease. Good luck with whatever you decide. I know there is a remicade and humira club thread where people share their experiences. For a lot of people it was a second chance at a normal life.
 
I wouldn't worry to much about the drugs or side effects. I have taken two now and one for many years. Glad I did too, they really made me feel better when they while they worked.
 
I've taken both as well.

I've had no side effects, but everyone is different.

I had over 5 years of great health on these drugs. They gave me a proper life for the first time in almost 20 years.
I don't think I research the drugs enough, but you know what they say, knowlage is dangerous.....!!!!!
 
Hi Peregrine,
Sorry to hear you are having such a hard time.
Crohns is draining enough without having to make stressful decisions on meds etc!!!
I was wondering where you are hearing the stories of "potentially deadly side effects" from? Are they from people that have been on remi/humira?

I have been on and off remicade for 8years, I have had no problems with it at all so far. I don't know if it's just me but I try not to live worrying about what could happen a few years down the line, I just know right now today remicade enables me to have some resembalance of a life. (I can actually try and live a little and I'm not watching life go by from a hospital bed.)
It is so easy to worry about what may or may not happen that you don't really get the chance to live at all.

I know there are potential risk with ANY medication we may take, there are risk involved with this disease (even more so if left untreated.) There are risk involved in nearly every thing we do!
Sometimes it is helpful to weigh up your quality of life now, including the stress you are under versus the benefits of the meds, and hopefully you will come up with a answer thats best for you.
I hope you are able to find something that works for you soon!!
I'm sure you will find a lot of people here that will give you good advice and support!

M
 
Ditto on Mussen and Danman... WE still have to have life, and being in long term pain isn't what I want. Yes, every drug known to man has sides or reactions, we are like snowflakes (lack of a better word) no to are the same in the disease, meds and reactions. Research is the best way to see but it also can make you think all these reactions will do it too you. The have to report it, placebo or not. I just liked the convience of the Humira... needles dont bother me, pain does. Good luck with your decision!
 
I took Humira for 4 1/2 months and it worked very well for me until it just kinda quit working.
I was VERY scared to take Remicade, but didn't have a choice really. It turned out to be the best thing I have done. I have been on it for 16 months, and I am in an awesome remission right now. My life is SO close to normal.
I had no side effects from either, as far as I can tell.

Welcome to the forum, P!
 
Hi peregrine,
I have to admit I haven't heard about any of the "deadly side effects" of the biologics. We are pretty sure my wife has AS, but her rheumy won't make a definite diagnosis until swelling shows on the x-rays... he has talked about putting her on Remicade for it once a diagnosis is made. She is actually looking forward to going on the biologics because I have had such good response to it with my Crohn's. I am pretty sure I have arthritis as well, but it doesn't affect me too much right now - most likely because of the Remicade.
Being informed about the possible side effects of drugs is good to know, so you know what to watch out for, but I wouldn't worry too much about it. The odds of getting most of the rarer side effects are very, very slim.
I hope you have success in whichever route you choose to go.

Good health and best of luck.
 
hi peregrine,

I'm new to this site, dx in oct/07 with mild colitis. I;m not sure if can help, but i;ll still post. Myself, i really hate taking pills for same reasons as you. Dr. prescribed asacol, which i haven't taken yet. I figure if its get worse then i will. My brother has AS very severely and he takes prednisone and oxcontin. The pred might help your crohn and AS together, but i'm no dr. Like all pillss, the pred weakens your bones and possible cataracks. My brother had been on them for about 20 years. If he doesn't take them, his pain is so bad. He doesn't tell much, but his bones are brittle and he does have catarack, not sure if from the pred. Sorry my spellling is not good. Well that's all i can post, and hope you get better.
 
I wouldn't worry much about Asacol Matty. I took it for about 12 years with no side effects. That being said I am not sure how much it actually helped me though. I think the 6-MP in that time is what kept me healthy.
 
im only 22. 9 years with crohn's. i have taken humira, cimzia, remicade and now methotrexate. There isn't a drug for crohn's except tysabri i have not been on. Even tylenol has a bad page of side effects if you look study pharmacology like i do.

There is 11+ years of Patient Data with remicade. I wouldn't be afraid of it.
 
Trysabri, is one I will never try. Cimzia shows up here, it could be worth a try. We Canadians always get the last of the FDA approval, could be a good thing..dunno.
 
Peregrine - I can sympathize with how you are feeling. I was diagnosed this February after suffering for nearly a year. I too was terrified about all of the potential side effects.

I think maybe it is easier to wonder if taking biologics is worth taking when symptoms are mild to moderate. My case so far seems to be moderate, at the most, and I was scared when my GI doc said I would start on Humira. I think if I had had a terribly painful case of Crohn's or ulcerative colitis (like some people on this board), it wouldn't have scared me as much because I'd be rid of the pain.

I've been on Humira now for 2 1/2 weeks and I am feeling really good! Sure, I have my off days when I eat something that apparently doesn't agree with me, but I've realized I had forgotten how it felt to NOT be in pain every single time I ate. Though my symptoms weren't as bad, it feels SO good just to be able to eat without the fear of pain after only a few bites. I didn't realize how much it was affecting my life until now.

Hopefully my condition continues to get better, but I wanted to tell you how it has helped me in this short amount of time. And this is coming from a chronic worrier, so I hope it alleviates some of the fears you may be having in starting biologic treatments :)

(It also helped me to think about the fact that these treatments were designed for people with rheumatoid arthritis and that MANY people have taken this drug before me, including children. If they do alright on it, so can I!)
 
Peregrine,

I'm in the same boat. I am STILL awaiting the approval from my ins co for Humira.

My first post was basically the same as yours.

The folks here have really help quell my fears.

Keep us posted.

Matty, I have been on Pentasa forever with no issues. I really would'nt be afraid of Asacol.
 
mussen said:
Hi Peregrine,
Sorry to hear you are having such a hard time.
Crohns is draining enough without having to make stressful decisions on meds etc!!!
I was wondering where you are hearing the stories of "potentially deadly side effects" from? Are they from people that have been on remi/humira?
Click to expand...

First off, thank you all for the time that you've taken to reply. I appreciate your input and many of you have made really great points. For those people for whom it is an issue of relieving constant and severe pain, taking a biologic is an understandably easy choice.

As for the potentially deadly side effects, Humira has been given a black box warning in Canada because studies have shown that it increases the risk of developing lymphoma and other cancers, as well as the risk of infection. The risk of lymphoma is increased for younger male patients. While the total numbers are small, it is still a frightening prospect.

I guess I will have to wait and see how severe this gets...

Again, thanks for all your replies!
 
As for waiting to see just how severe it gets, I dunno if you want to go there. I was so used to not needing medication for the past 3 or so years that I really resisted the idea. At first the flare was mild (This past September) and now its severe and I have 3 fistulas.

I think they mean like young males like late teens early 20s. Also these males were also taking immuran at the same time if my memory serves me correctly.

I am going to be taking immuran and remicade together. My GI hopes if we start off agressively then I can taper down to more mild meds when I go into remission. Were also hoping to avoid surgery, which when faced with remicade or surgery, I will gladly take the remicade.

Its a tough choice, but its your quality of life. I can say that I had no idea how bad I was off. My scope showed my condition was far worse than the symptoms I was feeling at the time. My doctor was surprised at how much I can tolerate. I wish I had x-ray vision to see my guts, as I would have went in for meds a lot sooner.

I hope you find a treatment that helps.
 
Lydia said:
As for waiting to see just how severe it gets, I dunno if you want to go there. I was so used to not needing medication for the past 3 or so years that I really resisted the idea. At first the flare was mild (This past September) and now its severe and I have 3 fistulas.

I think they mean like young males like late teens early 20s. Also these males were also taking immuran at the same time if my memory serves me correctly.

I am going to be taking immuran and remicade together. My GI hopes if we start off agressively then I can taper down to more mild meds when I go into remission. Were also hoping to avoid surgery, which when faced with remicade or surgery, I will gladly take the remicade.

Its a tough choice, but its your quality of life. I can say that I had no idea how bad I was off. My scope showed my condition was far worse than the symptoms I was feeling at the time. My doctor was surprised at how much I can tolerate. I wish I had x-ray vision to see my guts, as I would have went in for meds a lot sooner.

I hope you find a treatment that helps.
Click to expand...
I agree with all of this ^ .
I had also read that the biggest risk was for younger males who were also taking Imuran.
I was on Imuran at the same time that I started Remicade, and though the thought did scare me - I had to take the "live for today" approach.
When I found myself in remission, I asked my GI if I could come of one of them. He suggested we quit Remi actually, but I opted to stay on it and quit Imuran.
If you wait and see how bad it gets, and it does indeed get bad - it may be harder to calm it down again.
 
Jettalady said:
Trysabri, is one I will never try. Cimzia shows up here, it could be worth a try. We Canadians always get the last of the FDA approval, could be a good thing..dunno.
Click to expand...

Out of curiosity Pen, why wouldn't you try Trysabri?
 
Peregrine, your post sounds like me up until last year. I just wanted to share my experience and I hope it helps you make the best decision for yourself. No one can make that call but you, so I wish you the best sucess with whatever treatments you try.
I had such a mild case of Crohn's up until about 5 years ago I could never imagine myself on methotrexate or biologics. I also was kept in remission with entocort, and ended up with severe osteoporosis. Let me stress, however, this was because my GI did not monitor me on entocort-never took x-rays, dexa-scans, ect., and kept me on the flare dose for 6 years. When I changed docs my new GI was extremely upset and immediately took me off it. I have been on Aredia infusions for the osteoporosis and everything is returning to normal.
For me the AS and enteropathic arthritis is much more agressive than the bowel problems, and the pain is excruciating for me. Fear kept me from trying these drugs to the point that the disease had crippled me. I was unable to walk, and looking back I regret taking so long to try these meds. It robbed me of precious time with my family as well as my career. It's taking much longer to come out of the flare and heal, and at doses of meds alot higher than I might have needed before. In my experience it would have been easier to stop it before it got started, as opposed to trying to stop it at full tilt.
Any med that inhibits your immune system has serious potential side effects. Crohn's itself can have frightening complications, as I've found out. My rheumatologist and GI both think pred long-term is way more dangerous than biologics. I've been on Methotrexate for a year and just started Remicade, and now I've been able to go for short walks and am regaining my health.
I hope my experience can help you. Keep us posted!
 
Last edited:
I'll just give my two cents...I felt the same way about Humira at first - and resisted going on it. But after 20 years of having Crohns and letting inflamation run rampant for many of those years, I now am dealing with dysplasia in my colon and rectum. So that is way worse than taking the biologics.
I just did not know before the last few years that unchecked inflamation can lead to cancer.

I'm not saying that everyone will have the same trouble as me, but why find out.
Best of luck to you!
 
CDDad said:
I'll just give my two cents...I felt the same way about Humira at first - and resisted going on it. But after 20 years of having Crohns and letting inflamation run rampant for many of those years, I now am dealing with dysplasia in my colon and rectum. So that is way worse than taking the biologics.
I just did not know before the last few years that unchecked inflamation can lead to cancer.

I'm not saying that everyone will have the same trouble as me, but why find out.
Best of luck to you!
Click to expand...
that 2 cents is worth a lot to anyone willing listen. I am sorry you are dealing with that but it is something that will effect a lot of us in the long run. I have said it a few times before but I will say it again.

The risks associated with immune suppression are minuscule compared to the havoc of chronic inflammation.

I had a chat with my GI treatment team about this recently and they say it is a nominal issue for the first 8-10 years post diagnosis. But after 10 years they start with the regular biopsy/scopes to get it before it gets the jump on me.
 
I haven't read all of the posts; so, I apologize if I repeat others responses.

I started Remicade because I was at that point where I Just wanted to feel better. I had tried and failed all other medications and was miserable. Very miserable. I felt better after two weeks. I only had four doses before having severe side effects.

I was much more hesitant to try Humira after my experience with Remicade. Yet I was reassured in knowing that the majority of reactions to remicade may be related to the rat protein associated with it. Humira is human-based (or something like that).

I've been on Humira for over 18 months. I'm in remission but pretty sick of the constant sinus infections. This is a common side effect due to the suppression of the immune system.

I chose Humira over methotrexate because the impact on your liver with metho scares me.

I'm not a professional-obviously.

Just thought I'd share.
 
butt-eze said:
I haven't read all of the posts; so, I apologize if I repeat others responses.

I started Remicade because I was at that point where I Just wanted to feel better. I had tried and failed all other medications and was miserable. Very miserable. I felt better after two weeks. I only had four doses before having severe side effects.

I was much more hesitant to try Humira after my experience with Remicade. Yet I was reassured in knowing that the majority of reactions to remicade may be related to the rat protein associated with it. Humira is human-based (or something like that).

I've been on Humira for over 18 months. I'm in remission but pretty sick of the constant sinus infections. This is a common side effect due to the suppression of the immune system.

I chose Humira over methotrexate because the impact on your liver with metho scares me.

I'm not a professional-obviously.

Just thought I'd share.
Click to expand...


Have you tried a neti pot? Some people find that helps prevent sinus infections. Twice a day is usually good enough. Sorry if you already gave it a go and it didnt work.
 
Cimzia it is like a miracle med for me. It took few months of double dosage for it to kick in but my pain is virtually all gone. From pain level of 8-9 24/7 I am now 0-2 twice per week. I was on Remicade for 3 years but I could not handle the side effects. With the Cimzia, I also changed my diet to gluten dairy free diet.
All meds have side effects so we should make informed decisions. For instance, I will not try Tysabry (natalizumab) which has a 5/1000 chance for a debilitating brain cancer PML.
My GI is part of the team working on improving it so it does not pass through the brain barrier.
 
I found it scary to make the leap to biologics as well, but if I could turn back the clock I wouldn't have dragged my feet on it. While it has taken me awhile to get a high enough dose approved of Cimzia (400mgs every 2 weeks as of this month) to maximize its impact, when it's really working for me I am reminded of how I used to feel before this disease. I had no idea how much the pain and fatigue had brought me down until I had that taste of normalcy that only Cimzia has brought me. In the 8 or so mos I've been on it I've had Zero side effects or infections and I can't say that about any other medication I've ever been on.

Also, as has been mentioned by others the lymphoma risk is only for young men in their teens and very early 20s who are also taking immunos. at the same time. Even then the risk is low. Being on cimzia has changed the way I look at medication risks. It's helped me realize that I'm no longer willing to trade my quality of life for some false sense of safety because ultimately any of these things can happen to anyone and the increased risks are really quite small. Try not to let the fear mess with you. I don't know anyone whose regretted taking biologics. It can be a real life changer. Good luck.
 
I need to try and get Cimzia approval from my insurance company. Does anyone know of any independent studies that have been done with Cimzia and ulcerative colitis?
 
Peregrine,

Your are right in worrying about side effects of Humira both short and long term as I was and decided not to go on it. Fortunately, after doing my own research I discovered Low Dose Naltrexone LDN which conversely, has almost no side affects. The link below is a new website with lots of info.

Good Luck!

RobK

www.ldnscience.org
 
RobK said:
Peregrine,

Your are right in worrying about side effects of Humira both short and long term as I was and decided not to go on it. Fortunately, after doing my own research I discovered Low Dose Naltrexone LDN which conversely, has almost no side affects. The link below is a new website with lots of info.

Good Luck!

RobK

www.ldnscience.org
Click to expand...

I wanted to try LDN a few months back while my flare wasnt so severe and my GI doc said no. I was so pissed.
 
I also tried LDN for about 5 mos before deciding to go on Cimzia. I had many side affects from the LDN from sleeplessness, dizziness, nausea, etc. (none from Cimzia) and my overall health deteriorated. Although most of the LDN side affects went away after the first month or two, all of my crohn's symptoms (bleeding, pain, urgency, joint pain/inflammation, eye inflammation etc.) continued to get worse and worse on the LDN. Finally I was so sick that I had to give up on it and try the cimzia.

Which isn't to say of course that the LDN isn't worth a try, because for some people it works really well. It's also safer as a medication than the bios, although that only is the case when it's working because there is nothing safe about out of control inflammation. The unfortunate thing about this disease is that what works for one person can be intolerable for someone else. That's what makes all of these decisions so damn hard...
 
Slice,

I forgot to mention I take LDN in conjunction with the Specific Carb Diet (SCD). When I started the diet I found that I had to rely on prednisone and was only able to get off prednisone with LDN.

It's also important to know that the LDN is compounded properly by the pharmacy in order for it to be effective.

RobK
 
Rob, I got the LDN from Skips so I think I was okay there. The SCD is not something I could try at the time because the only foods I can tolerate while flaring are not allowed. I also have many fruit and nut allergies and meat is very difficult for me to digest as well. Oddly, just about the only things I don't have problems with are dairy and grains (and bananas and applesauce).

I guess that's what I mean when I say everyone is so different in terms of what works. I agree with much of what Elaine Gottschall says about the intestinal flora being key but I think so much of our bacterial make-up is unique to us that we really need to discover for ourselves what keeps it the most balanced. It really sounds like you've found the right combo for you. Anything that can help you get off the prednisone is doing some serious good. Stay well!
 
Slice,

Sounds like you got quite a bit on your plate (no pun intended)! Having those fruit and nut allergies makes it very difficult to follow SCD.

I know that everyone is different and not all treatments are as effective but I believe the word on LDN needs to spread...even if it can help 20% of Crohn's patients.

The fact that my GI had never even heard of LDN tells you something.

Keep searching and take care,

RobK
 
If LDN helps 20% of CD patients its great! The SCD diet is realli tough during flare ups.
I am on a Gluten free, fish diet and in conjuction with Cimzia it lowered my symptoms by 80%... and it was really bad.
 
Ok, so I know this is early. Its been 5 days since I had remicade and my butt is healed. It doesnt hurt to have a BM, it doesnt hurt to wipe and there is no more drainage. I have no tenderness in my abdomen and I can eat whatever I like. I usually have breakthrough inflammation at night when the pred starts to wear off and I no longer experience that either. I have had no side effects from the remicade and a cold went through my house this week and I have yet to catch it.

I was so scared to try this and its like I dont even have crohns right now. I will know for sure this worked when I come off the pred completely but right now, everything is awesome.
 
Lydia said:
Ok, so I know this is early. Its been 5 days since I had remicade and my butt is healed. It doesnt hurt to have a BM, it doesnt hurt to wipe and there is no more drainage. I have no tenderness in my abdomen and I can eat whatever I like. I usually have breakthrough inflammation at night when the pred starts to wear off and I no longer experience that either. I have had no side effects from the remicade and a cold went through my house this week and I have yet to catch it.

I was so scared to try this and its like I dont even have crohns right now. I will know for sure this worked when I come off the pred completely but right now, everything is awesome.
Click to expand...

Nice job I really pray for you that this works when you come off the prednisone.
 
My doc sent me home with a packet and asked me to educate myself on Humira, because she thinks I need to get ready for the possibility of having to take it. I've been scared, too. I think I feel better about it now, reading what many of you have had to say. Especially now that Pentasa is giving me terrible cramps.
 
The lymphoma risk comes from immune suppression in general, so it's not just the biologics. It includes long term steroid use, Imuran, etc.

I had bad experiences with both Remicade and Humira, but they were so rare of complications that it's basically an anomaly.

Remicade never really worked, and then almost a year into it it gave me a drug-induced lupus-like syndrome that made me allergic to the sun, arthritis flare, and all my hair fell out. I'm ok now, but I do have the long term effects of arthritis.

Humira for me appeared to work just fine, but somehow it just kind of masked my symptoms. Gut exploded after a year and a half or so.

But everyone else I know has had great experiences with either or both!
 

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