Humira? I'm scared

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blonde0724
Regular Member


Date Joined Aug 2011
Total Posts : 105
   Posted 1/11/2013 8:48 AM (GMT -6)   
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.
23 year old female who studies quality improvement for chronic diseases :)
diagnosed with UC 5/10 (terrible bouts of IBS before this since 2007 due to removal of gall bladder & pancreatitis)
last major flare: 5/11-11/11 - tapered pred 2x up to 150 mg
currently: lialda 4x, 1.2 mg, 6mp 75 mg, b12 injections, aprii, 10 million probiotic

Pluot
Veteran Member


Date Joined May 2012
Total Posts : 2500
   Posted 1/11/2013 9:01 AM (GMT -6)   
blonde0724 said...
If I choose not to suffer from UC, I'm going to get some kind of cancer.


We're talking about an increased risk of lymphoma from 2/10,000 to 4/10,000. You're still vastly more likely to die in a car crash, for example. Furthermore, if you "choose" to continue suffering from UC rather than treating the active disease, you're putting yourself at an increased risk of colorectal cancer due to chronic inflammation.

I strongly recommend reading this: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
liz, 26
http://itslikethisuc.blogspot.com

dx'ed UC pancolitis 5/12 w/ moderate-severe inflammation

past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate

current meds: flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema

supplements: folic acid, vitamin d, potassium

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 9088
   Posted 1/11/2013 9:11 AM (GMT -6)   
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.
Asacol 400mgs 2 pillsX3; VSL#3 112.5mgs 1 pillX3; Vitamin D3 5000 ius 1 pillX2; Thorne SF722 5pillsX3; garlicin 1 pill X 2; B6 1/day; Bentyl & Swanson DAO with meals

Discontinued: Robinul; Natural - peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Zymactive, Renew Life Probiotic 80 billion, Florastor, Slippery Elm, DGL, Monolaurin

SouthernGirl6
Regular Member


Date Joined Dec 2012
Total Posts : 399
   Posted 1/11/2013 9:19 AM (GMT -6)   
Do you trust your GI? I would rather have colonoscopies more often than to start a med for a mild flare.
Centrum Chewable Multivitamin, Pomegranates & Pomegranate Juice
28 years old and have had UC 13 years

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 3216
   Posted 1/11/2013 9:31 AM (GMT -6)   
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.
Male/61 DX IBD in Feb08. No meds, allergic to Mesalamine. Remission since Mar10. Powdered psyllium seed mixed with VSL3 is very helpful. Food journal instead of SCD or Paleo.

Lots of fruit & vegetables (but no plums or cruciferous), No Gluten, no soda, no HFCS, no xylitol or sorbitol, no trans fat, no shellfish, few processed foods, no carrageenan.
Probiotics, fish oil, multivitamin, extra D3, K2, E complex, phos choline, magnesium, boswellia, curcumin, DGL, glutamine.
Nature created all of the locks, therefore Nature has all of the keys

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/11/2013 11:38 AM (GMT -6)   
How do you feel? Are you able to work/go to school? If you feel fine, kind of a relative term, then why would you resort to more powerful medications at this point? Let us know what your current symptoms are.

Sue
Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 1/11/2013 12:07 PM (GMT -6)   
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.
diagnosed with left-sided UC in 1997. (45cm)

10caps Colazal

1 rowasa enemas nightly
magnesium citrate, calcium, VSL#3DS, tumeric, multivitamin

39, female

Somedude
Veteran Member


Date Joined Jul 2011
Total Posts : 3393
   Posted 1/11/2013 12:49 PM (GMT -6)   
garylouisville said...
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.


I didnt know you could be too obsessed to pursue health when were sick like this. 6-10 bowel movements is alot. You have no blood now, but with disease who knows what is in store. Furthermore, obviously 6 to 10 bm per day means inflammation which is not good. Staying like this status quo isnt any better than random meds.....imo

blonde0724
Regular Member


Date Joined Aug 2011
Total Posts : 105
   Posted 1/11/2013 1:02 PM (GMT -6)   
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?
23 year old female who studies quality improvement for chronic diseases :)
diagnosed with UC 5/10 (terrible bouts of IBS before this since 2007 due to removal of gall bladder & pancreatitis)
last major flare: 5/11-11/11 - tapered pred 2x up to 150 mg
currently: lialda 4x, 1.2 mg, 6mp 75 mg, b12 injections, aprii, 10 million probiotic

SouthernGirl6
Regular Member


Date Joined Dec 2012
Total Posts : 399
   Posted 1/11/2013 1:15 PM (GMT -6)   
Sorry if you have already said this or not, but have you cut out lactose? These symptoms sound like mine if I have had a glass of regular milk...which now I drink soy milk.
Centrum Chewable Multivitamin, Pomegranates & Pomegranate Juice
28 years old and have had UC 13 years

blonde0724
Regular Member


Date Joined Aug 2011
Total Posts : 105
   Posted 1/11/2013 1:49 PM (GMT -6)   
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 :(
23 year old female who studies quality improvement for chronic diseases :)
diagnosed with UC 5/10 (terrible bouts of IBS before this since 2007 due to removal of gall bladder & pancreatitis)
last major flare: 5/11-11/11 - tapered pred 2x up to 150 mg
currently: lialda 4x, 1.2 mg, 6mp 75 mg, b12 injections, aprii, 10 million probiotic

SouthernGirl6
Regular Member


Date Joined Dec 2012
Total Posts : 399
   Posted 1/11/2013 2:00 PM (GMT -6)   
By how you described the BM. I eat cheese and it doesn't seem to bother me as bad...but if I drink milk I have the BMs exactly like you described and eventually get constipated, even with it being diarrhea-like for the first BM..you might try backing off a few days just to see if it helps.
Centrum Chewable Multivitamin, Pomegranates & Pomegranate Juice
28 years old and have had UC 13 years

blonde0724
Regular Member


Date Joined Aug 2011
Total Posts : 105
   Posted 1/11/2013 2:21 PM (GMT -6)   
Interesting - definitely will!
23 year old female who studies quality improvement for chronic diseases :)
diagnosed with UC 5/10 (terrible bouts of IBS before this since 2007 due to removal of gall bladder & pancreatitis)
last major flare: 5/11-11/11 - tapered pred 2x up to 150 mg
currently: lialda 4x, 1.2 mg, 6mp 75 mg, b12 injections, aprii, 10 million probiotic

SouthernGirl6
Regular Member


Date Joined Dec 2012
Total Posts : 399
   Posted 1/11/2013 2:51 PM (GMT -6)   
Frappucinos=bad also
:)
Centrum Chewable Multivitamin, Pomegranates & Pomegranate Juice
28 years old and have had UC 13 years

Serenity Now
Veteran Member


Date Joined Jan 2009
Total Posts : 2153
   Posted 1/11/2013 3:08 PM (GMT -6)   
^^Admin alerted.
Female, 46, Vancouver BC
Currently in remission

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10559
   Posted 1/11/2013 3:10 PM (GMT -6)   
Somedude said...
garylouisville said...
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.


I didnt know you could be too obsessed to pursue health when were sick like this. 6-10 bowel movements is alot. You have no blood now, but with disease who knows what is in store. Furthermore, obviously 6 to 10 bm per day means inflammation which is not good. Staying like this status quo isnt any better than random meds.....imo


Kind of jumping in at random here - sorry about that - but I have to agree with Somedude. That many BMs indicates active disease, which could come back to bite you in the rear end. It did me. I was content to live with 3-4 stools (not formed) per day without being on meds, because I had no pain, blood, etc. Long story short, my disease got worse rapidly and has never gone back to its previously mild state. With the full benefit of hindsight and the possession of a time machine, I would easily go on Remicade or Humira (not Pred, though, waste of time, as the symptoms just come back once you come off it).

Not meaning to scare anyone. Some people's mild disease always remains mild. Not every mild case becomes a moderate to severe one. But some do and at the moment, doctors have no way of predicting in advance whose will. Of course, if a person doesn't want to take meds on the offchance that one day they might get worse, that's fine and dandy. But don't kid yourself you are not taking a chance, because you are. One way or another, UC/Crohn's will bite you in the arse.

SouthernGirl6
Regular Member


Date Joined Dec 2012
Total Posts : 399
   Posted 1/11/2013 3:14 PM (GMT -6)   
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.
Centrum Chewable Multivitamin, Pomegranates & Pomegranate Juice
28 years old and have had UC 13 years

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 1/11/2013 3:45 PM (GMT -6)   
I just recently started Humira. I used to be one of those people that did whatever the doctor said. However with this Humira decision I was much more careful. I was on Remicaid a few years ago and I got an infection that almost killed me. So they have been hesitant to put me back on an immunosupp. However I got really sick. I was having 30 bms a day. While waiting to start the Humira I went on Prednisone and now I have started the Humira. I saw a difference immediately. I was losing at least a cup of blood a day every day even on the prednisone. Took my four Humira shots on day one and that was almost two weeks ago and I have not lost blood since. If I was not really sick I would not have gone on Humira though.

IamCurious
Veteran Member


Date Joined Jan 2010
Total Posts : 3216
   Posted 1/11/2013 5:39 PM (GMT -6)   
@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.

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1038
   Posted 1/11/2013 8:05 PM (GMT -6)   
Also when doing lactose a lot of things have lactose you do not realize. You need to google the other names for milk. Whey is one of them. I found it surprising that ramen noodles has lactose. I thought I was eliminating lactose and really I was still consuming it because it is hidden by so many other names.
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