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Should I start Remicade/Humira?

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Posted 7/1/2014 3:42 PM (GMT 0)
Hi, I was dxed with Crohn's this past February after a flare in January, (no prior GI problems). I take Pentasa and just finished tapering off of Entocort as of last Thursday. I've been on a low residue diet for 5 months so far. This June has been the best I've felt since the beginning of the year. My main symptom of pain has been minor to nil. I have more good days than bad. I finally thought I am recovering.

Until I saw my GI doctor yesterday.

He is concerned that Pentasa will not reduce any lingering inflammation (TI), which could cause the inflammation to increase or cause scar tissue. He has offered me the option to start on Remicade or Humira. I have concerns mainly because this is all so new to me, I don't know what my pattern of chronic illness will be like. I told him I would like to stick with the Pentasa for that reason and he understood but said the option to use the "tried and true" medications like Remicade/Humira was there for me.

Did I make the right decision? Now I'm second-guessing myself. My Crohn's symptoms are mild but my inflammation back in January was severe, so says the Dr. I'm so confused. Any advice would be appreciated!
Posted 7/1/2014 5:54 PM (GMT 0)
Ccerulean

Welcome to the forums! I hope you'll find a lot of support and friendship here. I personally do not have Crohn's, my hubby is the person with Crohn's.  I know one of our members will be along to talk with your re the pros and cons that come with the drugs you are enquiring about.

Stick with us as we care and will support you to the best of our ability.

Kindly,

Kitt

Posted 7/1/2014 7:59 PM (GMT 0)
Hi Ccerulean and welcome to HW,
The current research seems to indicate that Pentasa doesn't help that much if at all for small bowel Crohn's. It's great that you are not having symptoms though, so I can understand your hesitation to start the biologics. How old are you? The younger you are, the more years you have to live with the disease, so that can sometimes sway treatment options. Can you get more imaging done now that you have tapered the Entocort such as a pill cam (as long as there is no narrowing or strictures) or a small bowel follow through test or CT scan? I think you are wanting to know if the Entocort and Pentasa brought down your inflammation, in which case you might want to delay the biologics. These decisions are never easy. If you are new to Crohn's, check out the webcasts and articles on the Crohn's foundation website at www.ccfa.org. You will find a ton of info there that may help with your decisions. you also may want to consider getting a second opinion from another GI. Ask us anything, and we'll try to help too.
Posted 7/1/2014 8:26 PM (GMT 0)
Hi Ccerulean,

It's great that you're reaching out. When I was diagnosed with Crohns four years ago I had no clue what my options were. I have a moderate to severe case and was pretty quickly put on Remicade. I was on it for three years and recently decided to stop treatment. It worked pretty well for me, but after the first couple of years I started noticing more of the side effects of the drug. I would have dizzy spells, cold spells, and constant infections all over my body. Because of these side effects, and because I know these drugs only work for so long on most patents, I decided to take another route. I'm 29 years old and decided I want to live a long and healthy life, despite this disease.

If you're feeling strong and healthy enough, you might want to try controlling your disease with lifestyle changes, exercise, and diet (something my GI never talked to me about...). I'm also using medical marijuana (I live in CA) in the evenings to help with inflammation and I'm on a treatment plan to rebalance the bacteria in my gut: http://theibdtimes.com/wild-oregano-oil-protocol. As I said, the Remicade did help me, but I was still getting a flare or two a month. When I started using the medicinal marijuana that stopped. My goal is to be able to be completely drug free which I'm hoping the rebalancing of my gut flora will help me accomplish. I highly recommend visiting Jini Patel Thompson's site for more information: http://www.listentoyourgut.com. She has a wealth of information on how to treat Crohns naturally, which for her and many others has been more effective than surgery and/or pharmaceutical medications. Here's info on a study done in Israel on medical marijuana and Crohns: http://www.medicaldaily.com/medical-marijuana-achieves-complete-remission-crohns-disease-drug-improves-appetite-and-sleep-247783.

Best of luck to you! It's hard work, but worth it for sure :)
Posted 7/1/2014 9:05 PM (GMT 0)
Thanks for the replies. I'm 32. This whole thing came as a surprise, initially the docs thought I had appendicitis. Fortunately they didn't cut me open right then since it turned out to be Crohn's. I've had two CT scans and a barium X-ray earlier this year so the doc doesn't want me to do more radiation. He says he will recommend an MRI to check inflammation in the future, but he doesn't want to now. My only symptom right now is what I call an "ache" in my lower right quadrant. It's been there since my flares in Jan and Feb, but has been gradually decreasing. I gave good days and bad days but I am to the point where some days I barely feel it at all. But this still implies there is some inflammation going on, I would assume.

In terms of diet... This has been a big point of contention for me. I have always eaten a very healthful, mostly vegetarian diet. When I had my first flare in Jan, I ramped it up even more -- leafy greens, salads, nuts, dried fruits, yogurt, baked chicken, etc. This only made me feel worse and one month later I had a second flare. The docs then started me on a low res diet, which has taken me 5 months to accept, it has been very hard for me. I follow it strictly but mentally it has been difficult. BUT I haven't had another flare. So I don't know what all this means.

My main concern with starting biologics is that what if they stop working for me and then at some point in the future I really NEED them? On the other hand, I worry about inflammation causing scar tissue and stricturing. I guess my question is, I've had inflammation for at least 6 months. Is that enough to cause concern of scar tissue? Like, could I get away with only taking Pentasa and seeing how I do? Or does it take years? I'm so clueless, thanks in advance for your replies!
Posted 7/1/2014 10:43 PM (GMT 0)
The low residue diet isn't meant to reduce inflammation. The reason you had increased symptoms with your healthy diet full of fresh fruits and veggies is that these things are bulky in the gut and take a long time to digest. An inflamed and constricted small bowel just cannot do it. You're lucky you didn't end up with an obstruction.

If inflammation is reduced you should be able to reintroduce fiber, but I'd take it slowly. I want to also add that there are multiple ways to assess your inflammation aside from CT scans and barium swallows. Blood tests may be able to detect inflammation. There is also a stool test that looks for fecal calprotectin, another inflammatory marker. And of course, the gold standard is a colonoscopy.

It seems to me that biologics would be a reasonable option for you. If your disease leads to permanent scarring and structuring in the ileum, you will probably end up with a resection at some point. Here's a note from the WebMD article on biologic meds:

"When prescribing any drug, doctors look at the potential risks against the benefits they hope to achieve. Although all doctors don't share the same philosophy on when to start biologics for Crohn's disease, they do agree that biologics should be used when people have severe disease that can lead to permanent damage that may require surgery."
Posted 7/2/2014 1:39 AM (GMT 0)
Hi Ccerulean,
I was diagnosed in 2007 at the age of 48. I was told that I had mild Crohn's in my ileum. My logic was to take the Pentasa and then if my disease worsened, then I would move to biologics at the point. I always had that ache that you described on my right side. My GI that I was seeing felt that I had mild Crohn's in my ileum but IBS in my colon. I was often constipated, and I had a couple of bad bouts with salmonella and c.difficile infections. I had a partial obstruction in April. At that point, my local GI wanted to start biologics. I went for a 2nd opinion, and I was told that there was way too much scar tissue and biologics wouldn't help, so I needed surgery. The specialist GI suspects that I had Crohn's much longer than 2007 and the scar tissue was building up for many years.

So my thought in your situation is that although you have been only diagnosed for 6 months, you may have had it much longer. The idea with biologics is to help you get into and stay in remission so you can avoid festering inflammation over time. But it is also reasonable, I think, for you to follow your inflammation with blood inflammation markers, the fecal calprotectin test, and colonoscopies to see how your inflammation is doing. If you are really in remission right now, then maybe you don't need biologics right now. It is a very difficult decision to make. I knew all the options and I went with Pentasa, and then needed a re-section. They are now recommending that I not take any meds, as the surgery caused remission, and until the disease returns I don't need biologics. But that will probably be the next step if and when my Crohn's comes back. I hope all this helps.
If and when you get into remission, you should be able to tolerate fresh veggies and fruit and fiber again, but you do risk an obstruction if you are still inflamed and your intestine is narrowed. I've had two partial bowel obstructions...the first after lentil soup, and the second after Chinese food. So be careful until you know you are in the clear.
Posted 7/2/2014 2:04 AM (GMT 0)
Thanks for sharing. This makes me worry even more. (I'm a worrier, which I'm sure doesn't help my Crohn's...) May I ask the amount of time that passed between your diagnosis and your surgery? I also think it's a little weird that my GI docs have never ordered bloodwork. Is that typical? I asked my GI PA if it was necessary and he said no. The next week I saw my GP and their bloodwork showed I was extremely B12 deficient. I didn't really know about blood tests for inflammation, should I ask my GI to check this?
Posted 7/2/2014 2:18 AM (GMT 0)
It concerns me that your B12 is low and it makes me think that you must still have inflammation going on in your small intestine, so you are not absorbing it properly. Yes you absolutely want blood work including iron studies to make sure you are not anemic, CRP--C-reactive protein, which is can be elevated when you have inflammation going on, Sed rate, and Vitamin D levels. What bloodwork did you have through your GP? Is it possible that your GI already had recent blood tests from you? You don't have to do it all the time. And if your B-12 is low, you may need B-12 shots.

Sorry to make you worry. There is a big learning curve the first year you are diagnosed, and I know it is all very confusing. I was diagnosed in 2007 and had surgery 5 weeks ago, so about 7 years, but I may have had Crohn's long before my actual diagnosis, so I don't really know the exact answer to that question.
Posted 7/2/2014 12:31 PM (GMT 0)
I had the bloodwork done in March because I was concerned about vitamin malabsorbtion. When I brought it up to my GI NP, he said I didn't have to worry about that because i wasn't anemic. I guess he was looking at my bloodwork from being in the hospital Feb 7. But you would think they would want to know if things had changed in 6 weeks...! So anyway, I got b12 shots weekly for a month and now I get one shot per month. I will have my bloodwork redone at my GP in November. Low vitamin D levels is something I've always struggled with, I was tested for celiac, thyroid, etc, but never Crohns since I never had GI symptoms.
Posted 7/2/2014 12:57 PM (GMT 0)
I don't think the blood levels change that much, and you are reporting that you are not anemic and feeling better overall. So they should follow with periodic blood tests, and they absolutely will if you go on biologics. But I don't think your GI was unreasonable not to take them right now. Sorry this is so stressful for you....in some ways the worrying gets better as you get more used to the idea of dealing with a chronic disease. Take good care
Posted 7/8/2014 7:10 PM (GMT 0)
Not to make you worry anymore (because stress is absolutely a big trigger for Crohn's), but I would make getting enough vitamin D and calcium in your system a big priority. I was diagnosed with osteopenia when I was 27 (a direct result of Crohn's) which was a big wake-up call for me (Osteopenia is the step before osteoporosis). Remember to take D and calcium together since they absorb better that way. My doctor told me to take 1000 IU of D and calcium a day, but I have since then read an article that said to take 1000 IU of vitamin D PER 25 pounds of body weight (http://www.bulletproofexec.com/bulletproof-your-sleep-with-vitamin-d/). Vitamin D can also brighten your mood which is an extra bonus for helping combat Crohn's symptoms!

Also, I hate to sound like the hippie homeopath of the group... but I would be cautious about having colonoscopies. I've had about 5 since my diagnosis about 4 years ago. It's what my doctors used to initially diagnosis me, so it's certainly not without it's benefits. However it can be catastrophic to the bacteria flora in your gut which I and many others believe to be a very big part of the disease. I would take large doses or probiotics after a colonoscopy, and would recommend that you make probiotics a part of your daily routine in general. I would recommend the brand Natren: http://www.natren.com/mm5/merchant.mvc?Screen=SFNT&Store_Code=N
Posted 7/9/2014 8:09 AM (GMT 0)
Not sure if this helps. I've been on both Remicade (8+ years) and Humira (3+ years).

I've researched them a lot, and have talked to a few doctors about it. The current tactic (I've been told) is to not reserve the biologics until things are out of hand, but to instead use them preemptively. The issue is that you really want to prevent the scar tissue from forming. Normal gut tissue is flexible, but scar tissue isn't. Once you get that scar tissue in place, it creates more pain and issues. The idea is that the new biologics work very well and are much more understood than just a few years ago. Using them before things get out of hand seems to increase overall wellbeing and long term health.

I've been on the biologics for almost 12 years now, and they've worked quite well. I've still got a lot of scar tissue from before them, but it hasn't gotten worse, at least not what the scans are showing.

Ultimately it is up to you. Look at all your options and make your decision. Just be VERY cautious about what you read on the internet. There is a lot of fear mongering going on about some of the newer medications that based on bad science a few bad experiences. You'll find there are many of us that have been successfully treated with these drugs.
Posted 7/9/2014 9:03 PM (GMT 0)
Here are a few final thoughts I have on Remicade and other biologics... I've found that different doctors have different ideas regarding biologics, so I would also encourage you to do your own research and figure out what options you feel comfortable with, then find a doctor that will work with you on how you would like to be treated. There is a lot we don't know about Crohn's and there is no one-size-fits-all treatment for it, so you will be responsible for a lot of the decisions regarding your treatment. It can be overwhelming, but it should also liberate you to not settle with one kind of treatment if it is not working for you. There are a lot of options out there for you.

My doctors were working on the theory that you should hit the disease hard at the beginning, and that could then change the course of the disease (nip it in the bud). I was very sick when I was first diagnosed and am significantly better now, but I'm not sure if that is a result of Remicade, medical marijuana, or diet and lifestyle changes. I was still flaring 1-2 times a month on the Remicade (10 mg every 8 weeks) and things didn't get better for me till I started using medical marijuana. I was told by my doctor that my Crohn's acts more like Colitis, so the Remicade and some other medications wouldn't work as well for me (I still don't fully understand what that means).

My friend's doctors told him that they didn't want him on any immunosuppressants, including Remicade, so he has been taking Prednisone long-term (which seems like a very bad idea to me). The risk of infections does go up when on these medications, but I think some people may be more prone than others to infection because of other variables.

Also, I just received an email from CCFA this morning about a new clinical trial for an antibiotic treatment designed to kill Mycobacterium avium subsp. paratuberculosis (MAP), a kind of bacteria that some people believe to be a cause or contributing factor to Crohn's (http://www.ccfa.org/research/participate-in-research/find-studies-and-clinical-trials/red-hill/RHB-104.html). You might want to check that out, or you can take a look at the Wild Oil of Oregano treatment I mentioned in an earlier post that is also designed to kill the MAP bacteria (http://theibdtimes.com/wild-oregano-oil-protocol). I'm hoping against hope that this could be the answer (dare I say cure?) we've all been looking for. Time will tell...
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