Humira for Mild Crohns worth it?

I have been suffering for awhile and have tried everything to avoid medication but have hit the wall and need advice. I have tried Prednisone and usually feel good the first few days after taking but then the horrible side effects kick in and my crohns symptoms persist which for me is chronic fatigue, lethargic, IBS, foggy brain to name a few.

I am by no means as bad off as most crohns patients and am thankful for that but what I do t want to do is neglect it and my condition worsens in my Ileum. So my question is mild crohns and the inability to have any energy daily and feeling lethargic constantly should I try Humira as my GI is now suggesting I try? I hear the side effects can be bad. Is it worth trying and should i be scared?

I totally understand where you're coming from, im no expert at crohns but i myself have tried to avoid the big guns of medication. Im currently on pentasa 4G daily salofalk 4G enemas and prednisone 7.5mg (started at 25mg) last December i had my worst flare in the 7-8 years I've had crohns. My crohns in the mainly in the rectum and abit in the ascending colon CROHNS/COLOITIS Qhence why i use the enemas and they've worker like a charm! last Decembers colonoscopy showed 20cm of inflammation in the rectum and abit in the colon my worst days i would go to the bathroom 5 times at worst with blood in some stool and that was only a few times so when the GI suggested Imuran i did my research and declined cause I didn't think i need it at this point in time i decided to go on prednisone for the first time in February and now im down to 7.5mg.
The way i seen it i didnt think i was that bad to get on imuran at this point in time, hell if later down the track i get really bad which i hope I don't i will try them of course i would (to get BETTER ANYTHING!) So the way you need to think about it is all medicines have risks and benefits. You need to weigh the possible risks of using these medications against the expected benefits. If your going to the bathroom 10, 15, 20 times a day and losing alot of blood then in that instance yes i would get on them but at the end of the day its your body and your choice don't let anyone here or anyone anywhere tell you to take this or that, it should be your choice and your choice only. People might disagree with me but this is how i see it but again if i didnt have a quality of life then i wouldnt hesitate to try it. Think about it like that. Hope this has helped alittle.

Cheers

Humira kept me in remission for 9 years. I had very little in the way of side effects. The side effects and long-term damage of prednisone are much worse. Many people are hesitant to try the biologic drugs, but most people do quite well on them. They are not only for severe Crohn's. They can help keep Crohn's mild. If the Crohn's gets too severe it can cause so much damage that the biologics won't help as much.

Thanks everyone for the feedback. I have tried diet and holistic approach with no luck. Have tried gluten free and many other fad diets with no success. I'm still weighing my options my wife is very scared for me to take Humira due to the leukemia disclaimer on the commercials. Are all the other drugs same risk?

As someone else on the forum once said, there really is no such thing as mild Crohn's. It just hasn't had the time to get worse yet. I personally think that Humira is really worth trying. I haven't been on it, but I've been on Remicade for 4 years and supposedly Humira has fewer risks than Remicade. Yes, there are some scary-sounding potential side effects, but a lot of that is in how it is worded and presented. For example (and I am making these numbers up), a medication might triple your risk of cancer. But if that risk is 2%, then it only goes up to 6%. Compared to the certainty of damage caused by Croh's not treated effectively, then it may be worth the risk.

Snarf1033 I was in a similar position when I first started out with crohns. I was terrified beyond belief of the drug side effects especially because I am sensitive to pretty much everything. Every time I'd have a flare it would be a course of prednisone and I thought that was enough to handle it but little by little with out me knowing it those gaps between flares were getting closer and technically I was probably having damage going on with out symptoms for most of that time. My quality of life eventually dropped to nothing and it happened in a way that I wasn't even fully aware of it until I could do nothing. I had no other option but to try humira that I avoided for 5 years. I was on it for about 9 months in which time my symptoms disappeared except for little things here and there, my fistula healed, and my energy was much better. I eventually quit it because I had some side effects that were concerning but went away after I stopped. 8 months later Up until my current very stressful situation I have felt very good. i tell this story because these drugs are really scary because you just don't know what will happen with them but in many cases they can really help and maintain your quality of life and prevent further damage like the fistula I got several years ago that had I taken Humira I might not have gotten. Crohns can get out of hand with out you knowing it. The best thing you can do is talk to your doctor and make sure you have one that understands your concerns and is willing to listen to you if you feel you need to stop it. Despite having a hatred for Humira before hand and some of the side effects it gave me, it put me into my first real remission and I would do it again if I have to (not without caution and still a bit of hesitation) it's up to you to decide if you want to wait or gove it a try. Good luck!

Humira is only available as injection(either syringe or pen). Your doctor will arrange to have a nurse show you how to do the injection yourself and give you your first one. It is given in either the thigh or stomach and after the starter doses which are closer together, it is taken every other week. I would usually feel body aches as I got closer to when I needed my next dose. There was some mild discomfort/burning sensation from the medicine immediately after and occasionally a small bruise but usually gone the next day. Your GI will want to do bloodwork more frequently while you are on it. The main problems I had were that After 8 months my body aches were getting worse, had leg cramps, muscle stiffness in my legs and swelling that made it hard to walk, there is probably more to that list. The doctor had me stop and I went for a ton of tests. No one could prove that it was or wasn't the drug but the felt there was a strong possibility. Good news is that with in a month or two it cleared up and the crohns was in remission and I felt great.

A fistula can be an abnormal connection to any organ or to the skin(I've heard of people getting one that goes to their bladder). Mine is a perianal fistula. Usually it begins with an infection in an anal gland and because of the inflammation it basically tunnels through to the surface and doesn't heal. It is very hard to heal because the inflammation prevents it. It's an extremely unpleasant thing to have to say the least. I dealt with it for at least 3 years getting bigger and getting more infected every time there was a flare. The Humira closed the hole that had developed and I had no problems with it while on Humira. Since being off of it I get pain there occasionally so I suspect it's not totally gone and may return when the disease becomes active again. Better just not getting one in the first place. There is no saying you will have that happen but it's best to be educated on the risks of both taking the meds and not taking them.

Hi Earthshine, I stopped having drainage not too long after I started Humira in November of 2014. I'm not sure of exact timing. I never had setons or surgery, though honestly I don't know why the doctor I had at the time it was at its worst didn't try more because it was agonizing to try to keep it drained and it would make my whole body ache when the fluid built up in it. I switched to a new doctor not too long before I started Humira and he didn't know too much about the fistula I had because at that point I had had it for about 3 years and Had learned to just deal with it as best I could. several months after starting Humira, approx 6, I thought I felt pain there and had a bit of bleeding. I was concerned it was going to start acting up but he looked and said there was nothing there, no more openings! I still get aches and pains there occasionally but so far it's been about 10 months nothing major. My blood work shows I'm in remission last time it was checked though I haven't had a colonoscopy to confirm it and the GI wants to wait because I have a lot of scaring that he felt it would complicate the procedure. As to how I've stayed in remission, my main trigger has always been stress and I've been doing my best to keep that minimized. While I was on the drug I was able to tackle a number of things that contributed to the cycle of stress and flares. though that theory will now be tested since my mom is in the hospital and I've got more stress than ever before. I also set aside about a half hour each day to take a walk or jog (when I got stronger) and that usually clears any aches that I get in my body. And right now even just a long drive where I can relax. My diet is healthy foods but not a special diet. if I had more time I would definitely try paleo to try to maintain this but unfortunately with everything going on that would probably just add more stress. (did SCD with only minor results a few years ago). I would like to get back to the GI soon and hopefully confirm that all is still okay....sorry for such a long post hope it's somewhat useful.

Thanks for all the replies everyone here is my next question though. I researched the different medications and it seems like Humira and that category of drugs is something usually prescribed after others have been tried and aren't successful. That being said shouldn't I be advised to try Aminosalicylates or Immunomodulators first? I've tried Corticosteroids (Prednisone) but it only seemed to help the first few days. I have also tried Pentassa in the past with no success but I often hear that other medications in the same category may work differently.

Thanks for any insight I just want to make sure I am taking or trying the safest drugs as I try and improve my condition and quality of life which is suffering due to the chronic fatigue from this disease.

More and more the biologics are used earlier in Crohn's therapy. The idea is to stop the disease before it gets too severe and the patient will have less complications later in life. The 5-ASA's (such as Pentasa) are generally considered no better than placebo for Crohn's. They have massively fallen out of favor, though they still have use for UC. The immunosuppressants such as Imuran and 6-MP are older than the anti-TNF's but are not necessarily safer. And I had way more side effects on them - nausea, loss of appetite, fatigue, and eventually jaundice that turned my skin yellow. Additionally, the immunosuppressants typically take 3 months or so to start working, whereas the anti-TNF's start working in days.

Bania, Labradorite
Your posts and experiences are helpful.
Is Humira something that can be restarted if it is stopped? I understand remicade is risky to stop and restart, my Gi mentioned the body can build antibodies to it?

This concern of inflammation spreading is concern provoking. How does one protect themself from that if they are not on medicine? Can things like scd or gaps diet prevent it? What blood tests are monitored? Crp?

Hi earthshine, Humira works similarly to remicade because it is a synthetic version of it so There is a strong chance it might not work again if you try to restart it. I do have a friend whose husband uses it only for a year or so at a time for bad flares of RA and with his doctor's permission goes off of it for periods but is constantly on methotrexate. So it is possible but you have to really work with your doctor and have some other maintenance med. The doctor I mentioned that I went to for awhile with the bottom up approach had suggested I only be on Humira or 6mp for two years and then attempt to get off. Really loved his overall approach (it was too bad he really messed up my colonoscopy badly and told me I could read my own TB test. it was just no longer the right fit)
I totally 100% agree with you NiceCupOfTea, that's why I ran from Humira when I was first diagnosed. If it's mild when first diagnosed there is really no knowing how fast it will progress so not jumping into the biologics makes some sense. It really comes down to fully understand the risks you are taking in not being aggressive and vice versa. I think in the beginning I didn't totally grasp that the complications could happen to me in the way that you never can until you are in that position. I went through every flare for five years debating whether I should start it or not and asking this forum advice each time until I could not avoid it anymore. I lost a lot of time feeling miserable and having my life upended but I don't know whether I would have done anything different because I would have constantly been worrying about Side effects and thinking that maybe I would have been fine with out the meds.
As for the inflammation, diets help with symptoms and can make it seem like you are in remission but a lot of the time inflammation will still be occurring with out knowing it and doing damage. Blood tests for inflammatory markers, esr and crp, and colonoscopies are really the only way to know. If you are not on a major medicine most doctors recommend at least being on Lialda or something basic that usually doesn't do too much. Also everyone has different triggers so getting to know what starts a flare for you is important.

One other thing to think about also is that if prednisone doesn't do too much to control the disease for you, it is going to be really hard for you if you have major flares since prednisone is usually used for emergency flares. if the disease gets more severe you will most likely end up back on it and it may get harder to taper off of it. Again, not trying to sway you in any direction, and not saying that it will happen, just things to keep in mind and discuss with your doctor.