Humira? I'm scared

Silly girl.
I'm the one that posted that my colonoscopy looked good. Doc called and said my biopsy showed active UC and we need to discuss a different drug. Silly girl.

about 3 months ago he downed my dosage of 6mp from 100 to 75 (used to be 150) as he said I had "high" levels but not "toxic levels" We're getting another blood test and checking the levels. I feel fine but since he told me that I don't feel fine. Can't get in at Hershey for a 2nd opinion until March 31. Feel free to recommend for the Eastern Central PA area. In the meantime I guess I continue to see him and move forward with Humira. He is not very open to my suggestions so I need as much advice so I can dig up the research and present it to him.

I'm scared. I've been researching Humira all morning. If I choose not to suffer from UC, I'm going to get some kind of cancer. I know the 6mp also has some unfavorable side affects with the C word, but not as many.

What are you thoughts? I don't know if I can take this jump. Is this the normal medication progression?

I recently went to a naturopath and here is my thing... I understand if you colon "looks" fine, my doctor said that as well, but what does the cell activity say underneath? Is the biopsy from your most recent colonoscopy showing that ALL cells are healing and not just the superficial ones?

Seriously, anything, even a smile could help today.

What are your current symptoms? I have 6-10 bms per day, usually always with formed stools and no blood. I would rather live like that the rest of my life than go on prednisone, immunemodulators or biologics. Some people are too obsessed with remission in my opinion. If you're not doing too bad the risks really aren't worth taking with these dangerous drugs but if you are not in good shape and having a lot of diarrhea blood, and other symptoms then it may be more worth the risk. Colon cancer is a possibility if you don't treat the disease effectively and cancer is always a possibility from the drugs themselves. Sometimes it puts you between a rock and a hard place. A lot of people, both doctors and patients, will poo poo the risks as being small but the fact is even though the risks are in fact small, there are still thousands who get cancer or other bad things from these meds. Just remember, there is no law that says you must do what the doctor orders. This is your life and you have a right to be part of the decision making process.

You might be able to manage this disease without resorting to big gun meds. Maybe you could reach the point of controlling your symptoms with the milder 5-ASAs.

Most veterans of this disease, whether or not they are on conventional meds, eventually learn for themselves that they are better off if they avoid certain foods that aggravate symptoms. Try to eat gluten free for a couple of weeks to see if your symptoms lessen. Gluten and dairy are the usual suspects but any food can cause problems. So I prefer a food diary or journal to isolate dietary triggers.

We have numerous threads here indicating that rectal meds such as mesalamine enemas are very effective with relatively few side effects. You may want to check them out. For some reason doctors are reluctant to mention them even though they work.

Popular supplements are fish oil and getting your blood levels of vitamin D, iron, and B12 checked to correct any deficiencies. Probiotics are probably the most popular supplement for IBDers. Check out our signatures to see how each of us manages this disease.

I started Humira on Monday. I was scared to death too, you can read the posts....but I am doing fine on it and since I have started, have heard so many great stories about how it has helped so many others. It was a hard decision for me, and If I had felt ok, but my biopsies were not good, I would not have taken it. I go off how I feel. And your doc needs to realize that it is your body, and he needs to start listening to you. But if you do decide to take Humira, remember, the people who feel great on it never post, they are busy getting on with their lives. Day 5, and I have no issues yet. Not helping the UC too much yet, but I am confident it will.

Oh my gosh, thanks so much for writing all of this guys!!!

My current symptoms are pretty much non existent. I started on a vitamin world brand of 10 million? billion? probiotics when I felt a flare coming on in November and I've been doing better.(PS. how do you get something stronger like VSL?)

BM's today are 2, however they usually range from 2-0. If i do go, I go twice. They are formed, but flakey I guess I would say. Usually laced with blood (not alot). If I go twice a day the first is usually stringy white/yellow mucus I would say. What exactly does that stem from?


@plout - thanks for the stats - i will check it out after work.
@garylouisville - i never thought about the option that i had the choice to say no. thanks for the different perspective.
@southerngirl6 - no, i don't trust my gi. i saw another doctor for a second opinion but chose to stay with him due to the fact he is very accessible and he is closer (colonoscopy and schedule visits)
@babeinthewoods - i've been supplementing my b12 deficiency but haven't noticed anything else. is this something i should discuss with my primary care doctor and ask for a certain blood test? I see the signatures how how everyone manages but THERE IS SO MUCH! my doctor has never brought up the rectals. that is definitely going on my to talk about list.
@suebear - i do feel fine. Unfortunately I don't do the gym and watch what I eat (shame on me, I'm an ex college athlete) but I am able to maintain my busy schedule -> day job 7-3, coach hs girls basketball, bartend at night and officiate weekends without interruption. There is always that exception, though.
@lemonhead - thanks for the insight. definitely reading your posts...



I understand I need to know what my body is telling me, but my god I can't let it get too far that I get started on predniosone again. I've never been introduced to another option than pred for flares for less than 6 months. I would not be able to hold down a job if that were the case.
What exactly are the rectal meds? Isn't Lialda a 5-ASA drug? What do you define as a milder one?

@babeinthewoods - I'm going to start a food journal tomorrow. My naturopath has tried to get me to do this and I just haven't. Do you track anything besides food and bowel movements.

I want to try things other than harsh medications. I truly believe it is going to be a balance between the two, but there is so much. How in the world do I know where to start and what to start on?

I haven't - do you say that because of how i described the bm or just symptoms in general?

i love cheese way too much :(

Interesting - definitely will!

^^Admin alerted.

I just use the mild times as an opportunity to experiment with different options. I know everyone's disease is different...I fear if I jump to meds, my body will stop healing on it's own.

@babeinthewoods - i've been supplementing my b12 deficiency but haven't noticed anything else. is this something i should discuss with my primary care doctor and ask for a certain blood test? ...
I'm going to start a food journal tomorrow. My naturopath has tried to get me to do this and I just haven't. Do you track anything besides food and bowel movements...

Any blood test that detected your B12 deficiency probably would have also measured your iron levels. But it is really a good idea to also measure your vitamin D levels. Vitamin D is a panacea vitamin that affects everything from cancer, heart disease to IBD. Google "vitamin d ulcerative colitis" to see some interesting links. And www.grassrootshealth.net is very helpful.

You should only test one food at a time, much as Southerngirl6 mentioned above about dairy. After dairy try going a couple of weeks avoiding gluten. Isolating triggering foods sounds easy but is harder than it looks. It is easier if you are in remission. For example after eating a dinner of shellfish you may notice flaring the next day. It is much harder when you are flaring all the time. I am still noticing new triggers, my most recent was xylitol.