Confused about what treatment to get? Remicade; good or bad?

[Amberly]

Hey everyone,

I'm new here and terribly confused as to what route I should take.
After four years of being sick and in constant pain, the new doctor I have been seeing for the past few months finally gave me a diagnosis yesterday. I have to say, even though I had a feeling it was Crohn's, I was not prepared to handle it and am still partly in denial.

My doctor explained that she wants to start aggressive treatment. I had both a biopsy of my small intestine and an MRI-E done. She cannot tell if scar tissue has developed yet, but she said it is inflamed and if we don't start treatment relatively quickly it could stricture and I'll have to have surgery, which terrifies me; I want to avoid that for as long as I possibly can.

I took Lialda about a month ago for two weeks but it made my stomach cramps worse, so my doctor had me go off of it. And then my other symptoms came back with a vengeance and I seem to be getting worse and worse each day and its become harder to handle. I can barely make it through a few hours at school each day.

My doctor wants to start me on Remicade. I have to get a TB test done next week and she wants to start it by next Friday at the latest. During the appointment she explained me to that Lymphoma was a side effect and it didn't seem like much of a thing to worry about, but when I got home I read the pamphlet she gave me and I'm completely terrified now. I have a heart condition LONG QT, so my heart beats at about 140ish for a resting rate. My uncle who has Crohn's and takes Remicade said it can cause further heart problems. I'm also really worried about the Lymphoma now too.

I've been so sick the past couple of months that I'm desperate and almost willing to try anything; but I don't want to risk cancer. I'm going to call my doctor on Monday to discuss it further. At my appointment yesterday she said I could either do Remicade (which she strongly suggests), a medicine called 6MP, or a strict carbohydrate diet.

Is there any other medicines I could possibly discuss with her? I'm open to any possibilities, and I want to explore all options before diving into something that is potentially dangerous. If anyone has tried any of the treatments listed I'd love to know how they worked for you!

I'm getting worse and I'm afraid if I don't get better soon I'm going to end up in an insane asylum. I just want to know all that I can first before I start a treatment. I heard Remicade is supposed to be a last resort?

Thanks guys! And I hope all is well with you.

 

[SarahBear]

Welcome to the forum, Amberly!

My main suggestion for you is to check out the forum's Treatment section. There are subforums dedicated to Remicade and 6mp (those links will take you to the forum wiki pages, which you might also want to check out), and most of the other medications used to treat Crohn's. You can find information on the SCD diet under the Diet, Fitness, and Supplements section. If you have any questions you don't see the answers to, post a thread asking!

Most medications have a lot of potential side effects - but in most cases, they're just a small possibility. The drug companies have to put this information out there, mainly to protect themselves from lawsuits. Reading up on medications is usually pretty scary, so just keep that in mind. It's really unlikely that you would experience any severe side effects, but make sure you notify your doctor if anything strange does happen once you start taking anything new.

I'm sorry you're feeling bad lately. Crohn's can be a tough diagnosis to accept, but remember: you can be treated. Now that you have a diagnosis, you're one step closer to remission!

Please let us know what you decide.

 

[my little penguin]

There is a risk of lymphoma BUT there is a risk of cancer leaving crohn's under treated .
The risk of lymphoma is very small.
Do you drive? Risk of death there is very high.
Swim high risk.
Sleep next to an alarm clock. Take hot showers . Eat rice ( arsenic)
My point is your are unknowingly or blindly taking risks of cancer or death daily but the benefits out weigh those risks by letting you do normal things .

Here is the ccfa risk of biologics paper

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

 

[Clash]

Sarahbear has offered great advice and the links she provided are chock full of info. As you research these medications you may want to write down each of your concerns and questions, that way when you do speak with your Doc you can make sure he addresses each of these. My son started remicade early this year and he experienced relief almost immediately although he still hasn't reached full remission he no longer suffers with any of the pain or cramping he had before remicade. I hope you are able to achieve relief and remission quickly no matter the treatment you decide upon!

 

[Amberly]

Sarah,

I went and checked out the Treatment section and found some interesting things on Remicade. Most people seem to do okay with it, so that eases my mind a little. So thank you for pointing out that section!

I usually try to avoid reading up on medicines, because the side-effects always seem so terrible, but I feel like I should be cautious in this case.

Thank you for the support. <3 I'm trying to remain positive by telling myself that I can now do something to get better.

 

[Amberly]

My Little Penguin,

I like how you put it into a perspective of how we are at risk of death nearly everyday.
It's true. I always used to tell myself that after I heard it the first time, but I am so strung up on getting healthy I uneasy about taking risks that can put me on a detour to that goal.
Thank you for that link though! It was helpful!

 

[Amberly]

Clash,

I'm glad that your son is doing better! My mom has a rather hard time with this; she hates seeing me sick. But thank you for the testimonial on the Remicade treatment. I'm eager to see how different people have done with it; helps me weigh my options. And writing down the questions is a good idea. I always seem to forget things when I talk to my doctor!

 

[Clash]

Oh I always forget the questions and concerns I have until we are on the way home! Haha So I just started writing them down as they came to me or I came across them in my research then the day before the appt I go through and prioritize them. A lot of members do really well on Remicade and we had the same fears as you. Looking back now though, I'm really thankful that the remicade has been able to give my son his QOL back. The fears still niggle at you from time to time but MLP is right there are so many risks in everyday life we never think twice about.

 

[Amberly]

I actually wrote down questions for my appointment yesterday, but it just seemed like so much stuff, that even though I talked about everything I had written, I realized I had more questions when I left!

You may know from experience, but is it true that once you start Remicade, if you stop, you can never use it again? Because your body builds an immunity to it? I think that's another factor that is holding me back.

 

[Clash]

There have been a few studies about that very thing and it seems that a percentage of patients are unable to utilize remicade again after stopping due to antibodies. These studies are posted in the remicade treatment forum as well. I would post a link but I am on my mobile at the moment and it never cooperates with me and link posting ha! Not everyone has that issue but it is probably prevalent enough that you would want to seriously consider those ramifications when deciding on utilizing remicade. There are a few other biologics that you could try after remicade though, humira and cimzia. And if course there are other meds in the pipeline that will hopefully be approved soon.

 

[Amberly]

I will go search the Treatment section and see if I can find that, too.
I will definitely have to talk to my doctor about that. I've had it happen before
where medicines are no longer an option because I stopped taking them once before.
I've heard of Humira. My uncle said that is an injection though, and I don't like needles.

 

[Gianni]

Hi Amerbly,

Have you considered alternative treatments Or a strict diet change?

Some have utilized the Paleo Diet with amazing results.

Others have utilized Raw Veganism, like myself. I have experienced amazing results since adopting this lifestyle.

And many others are adopting Juicing


Alternative Therapies may include:

Medical Marijuana ( if it is something you are comfortable with and is legal in your area).

Low Dose Naltrexone

Enteral Nutrition

And of course Diets which I mentioned above.

Personally Remicade did not work for me as my symptoms continued to get worse. Humira did work for me but I found myself constantly ill while on it, I actually ended up having pneumonia three times in just one year while taking Humira.

However these medications do help many people and should be considered as they will reduce the immediate inflammation and related problems. The cancer risk, although scary, rarely manifests into an actual case of cancer.

Gianni

 

[Amberly]

Gianni,

Thank you for all the links and information. I appreciate it!
I actually used to be a vegetarian; I was one for three years before I had to quit.
I had been completely healthy and about two years into the diet change, I became ill and haven't been well since. So I'm not sure how I feel towards vegetarianism anymore.
As of now though, I only eat chicken, turkey and fish-and still rarely.

The idea of juicing does sound interesting though; I will definitely read more up on and talk it over with my GI.

Thank you for the input on the Remicade, too. I'm really interested in hearing personal experiences before I start, if I do. I read on another site about people getting pneumonia while on both Remicade and Humira. I'm definitely seeking for an immediate solution, since its been so long, but I will definitely look into those other options.

 

[FullM3lt]

Remicade worked decently for me but I had a bad allergic reaction during my 4th infusion and could not use it again...

Gianni pretty much covered it all :thumleft: Most medications made me more ill and I didn't find relief until I explored alternative methods. That being said, every individual is different.

A lot of doctors say that diet has nothing to do with IBD, but I STRONGLY disagree. I'm seeing my naturopath soon to discuss some sort of diet plan since I've seen so many people have success with strict diets on this forum

Good luck to you, Amberly

 

[Dukeis]

Amberly- My experience with Remicade was great while it lasted. It was a true wonder drug for me for 7 years. I felt great while on it. At times I would begin to feel I never had Crohn's at all. Then in early 2009 I began to become very fatigued like I had the Flu that just would not get better not matter what they tried. It turned out I had a case of Acute Histoplasmosis a fungal infection in my lungs. My case is one of the reasons there is the black box warnings on all the anti-tnf meds now. The doctor that diagnosed me told me if it would have been left untreated a few more weeks it most likely would have killed me. Even with all it caused I wouldn't trade those 7 years for anything. I even tried to restart Remicade after the histo cleared when my Crohn's flared, but it never worked.

 

[Amberly]

FullM3lt,

Thank you for responding and thank you for the input! I've read about alternative treatment and a Professor of mine mentioned a doctor that has had success with herbal remedies. So I'm not opposed. Hope you are well!

 

[Amberly]

Dukeis,

So it was certain that the Remicade led to the infection of your lungs? I'm glad that you were able to get it treated in time!
I'm starting to think it wouldn't hurt too much to try, but I don't want to end up not being able to try it again later in the future if it doesn't work now.
And thanks for the personal experience account. These are really helping!

 

[Dukeis]

Yes they were certain it was the Remicade. I was treated at the Mayo Clinic so I'm confident in what they told me.

 

[Amberly]

I've heard about infections due to the lowered immune system. My uncle has warned me about them, too. Thanks for making me aware of that possibility! I do appreciate it!

 

[xmdmom]

Amberly,

If you are under the care of a cardiologist, I would ask him or her about remicade before adding it. In any case, I would make sure your gi doctor is aware of your long QT issue. Is there not any treatment to lower your resting heart rate?

Best wishes

 

[Amberly]

xmdmom,

I do have a cardiologist, so I will ask if they any opinion on it. I'm pretty sure my doctor knows about the condition, because I mentioned it before. But I will double check. I am actually on a beta-blocker, which usually keeps the rate around 70-90. Lately though, its been spiking back up and my specialist said its just my normal beat.

Thank you!

 

[stevej54]

I just finished my first infusion of remicade last week. I went thru what you and everyone else has. Reading all about the side effects of remicade. The good news is that only a small number of patients, according to the drug companies lol, experience side effects. I decided that I had to do something because living with the effects of crohn's was no way to live. So far I feel a little tired but not sure if its the remicade or something else. No symptoms like before so the quality of life has improved dramatically. Not perfect, but pretty good. Good luck. I'll keep you posted on my remicade progress.

 

[Amberly]

Steve,

Thanks for the input! I would love it if you keep me updated on how your infusions go. Reading the side-effects are definitely not a fun thing to do and they only seem to make me nervous. But I'm glad that your quality of life seems to have improved; that's awesome! Good luck! I hope things continue to get well. Thanks again for letting me know how it went and what its like.