At a Crossroads!

humira overkill

Introduction:

Chris, age 37. Diagnosed in September 2013 after a colonoscopy and a very long summer of deeply unpleasant symptoms. Not thrilled to be making my acquaintance with so many new doctors, blood tests, medications and procedures.

Some more about me:

Originally from Washington, DC. I haven’t lived there in 20 years but also haven’t totally gotten politics out of my system – I’m fascinated by the “journalist-lobbyist complex” and the political process. I do non-profit work now and in my scarce free time like “rare trackage” train rides, kayaking, visiting New York City and Philadelphia, and learning to cook chicken in as many ways as possible. I’ve never met a dog I don’t like, and have trouble putting down books of the detective fiction genre.

Symptoms:

Currently symptom-free.

At a Crossroads

I suppose on a website about UC, there’s really no “nice” way to tell a diagnosis story, so here goes, hopefully without being too gross:

Last summer, I joined a gym, got a trainer, and changed my diet. Everything was great for about six weeks: I was losing a little weight, enjoying the extra energy, and liking feeling more fit again (after about an eight-year break seeing the inside of a gym). But then things changed.

Some background: maybe five years ago, I’d had some irregularity, some mucus and some blood in my stools. I saw the doctor who referred me to a GI who said I had hemorrhoids, suggested I start Metamucil, and overall drink more water. I did, and sure enough, within a couple weeks, the symptoms were gone, and everything was back to normal.

Back to this past summer. Those same symptoms started again, but worse, and were accompanied by the heart-stopping, terror-inducing urge that many readers of this will know all too well. But the product of those visits to the toilet was all gas and mucus. I’ve never had any diarrhea at all; when I was at my worst, I was actually pretty constipated, and the bloating was really awful. I’ve never had any pain. Even though there was no diarrhea, because of the explosive gas and mucus, causing 15-20 visits to the toilet each day, I had to greatly curtail any physical activity, and plan to stay near the bathroom in particular after breakfast and after dinner. And yes, there were a couple of mucus-related accidents.

After a couple months of this (and increased Metamucil, water, and fiber bars, all to no avail), I went to my internist who referred me to a GI. I described what I was experiencing and he ordered a colonoscopy. I had it done that same week, and when he visited me in post-op, he had seen the pictures and they confirmed his suspicion: UC.

I’ve been an insulin-dependant diabetic for over 20 years, so I’m used to serious diagnoses. I didn’t really know much about UC at that point, but figured nothing could be worse than diabetes. My doctor is young and easy to talk to and encourages contact between appointments via email (a first for me with a doctor!), so I felt confident with him. I was determined just to do what I needed to do to get past the shock and start getting better.

In post-op, the doctor gave me prescriptions for a course of Prednisone (6 then 4 then 2) plus Lialda (just $10 a month with the discount card). Within a few days, I was totally back to normal, and suffering no side effects from either medicine…other than VERY high blood sugars from the Prednisone (which I expected). I was eager to taper off so my blood glucose readings would come back down to earth.

I was down to two Prednisone a day when the symptoms returned: a little mucus, a little blood, but bad irregularity. I went back up to four, and the symptoms stopped. I told the doctor about it and he said the Lialda wasn’t working, and he suggested switching to Humira, knowing that as a diabetic it was important to get me off the Prednisone as quickly as possible.

And then I found this website (and bought the ebooks!), and started doing more research into Humira. Basically, I’m terrified to try it. The reviews here and elsewhere are pretty much universally awful, and can’t get my head around injecting something so potentially dangerous into my body. And I’m slightly confused because – although unpleasant – my symptoms are not nearly as awful as most of the other stories I’ve read, so Humira for me seems like overkill.

My question is: what other options that folks here have tried might I suggest to my doctor? I’ve read about Uceris, which seems promising (I know it’s like a steroid but my understanding is that it’s much easier on the body than Prednisone), and also sulfasalazine – in a different drug group than Lialda. I know there are many other options; I appreciate I might be left with no other option but Humira at some point (my insurance will not cover Simponi), but I want to make sure I’ve exhausted everything else before taking that step.

Right now, on four Prednisone and four Lialda a day, I basically feel fine. I’m regular, there’s no mucus, no blood, and minimal bloating. I’ve noticed my temper’s a little shorter than usual and I have some slight double vision early in the morning and late at night; my research suggests it’s the Prednisone. I’d like to get off it entirely, but would like to know the best way forward.

I sense there are a lot of wise and experienced eyes reading this, and I’d love to know your thoughts.

Medications/Supplements:

Lialda: 4/day
Prednisone: 4/day

Lantus: 22 units/day
Novolog: sliding scale

Levothyroxine: 75 mcg/day
Simvastatin: 10 mg/day

Melatonin: 6 mg/day

written by Chris V

submitted in the colitis venting area









14 Responses to At a Crossroads!

  1. april December 3, 2013 at 5:33 pm #

    hi there , i am also a type 1 diabetic, was diagnosed at the age of 15. I take humalog, but i am on a pump. I also take asacol for my colitis. I am now currently on a medication call Vedolizumab, it is a very effective medication for the gut only… minimal side effects. I was in the same situation and was Stuck on prednisone for 4 years with remicade. I had grown antibodies to the remicade and had to go off. Then i had to get off prednisone i was developing cushins syndrome. But since then the Vedo and Asacol is all i take and has been great thus far. I also watch what i eat and take 1tbs coconut oil a day, probiotics, and alot of vitamins, since im iron deficient and along with others because we dont absorb alot of nutrients with the UC. I hope this helps a bit, i have had UC for 24 years now, im 34 years old. Good luck.

    • Chris V. December 3, 2013 at 8:18 pm #

      April,

      Thanks for the comment. It’s good to have another diabetic’s take on UC.

      Glad to hear the vedolizumab has worked for you. Are you in a trial program? Thanks as well for the supplement tips – I’m still working through the many diet/supplement options I’ve been reading about.

      Chris V.

  2. PeterNZ December 4, 2013 at 5:22 pm #

    Sounds like a pretty quick taper off the pred (though you don’t say the dosage – pred comes in many different strength of pill, so e.g. 4 x pills a day could be 4 mg or 80 mg daily). Perhaps wean off a lot slower? Once you get below 20 mg try decreasing by 1-2 mg per week?
    There is also Azathioprine and Methotrexate to consider. Though if you don’t like the sound of Humira then you probably won’t like the sound of those 2 either.
    Its a tricky old one and it seems what works for one fella won’t for another.
    Good luck,
    Peter

    • Chris V. December 4, 2013 at 6:04 pm #

      Hi Peter,

      Thanks very much for your comment. I started the Prednisone at 30 mg, but below 20 (I’ve tried twice), the symptoms start to return. I’ve been tested to see if I can go on Imuran, and I can, but I’m getting a second opinion in a couple weeks so until then I’m sticking with the 20 mg of Prednisone and 4.8 mg of Lialda; I’ve been on this for 10 weeks. I’m open to Imuran and methotrexate – at least with those I’m spared another injection!

      Thanks again,
      Chris V.

  3. Sharon MacArthur December 7, 2013 at 7:37 am #

    I went on Humira after having a near death experience with Lialda. I can no longer take any 5 ASA drugs or mesalimine. 6mp left me with raging headaches and a heaviness in my extremeties. I cried when I finally agreed to the HUmira. As it turns out, it worked great for me for about 8 months. If you ice the injection site before the stick, it’s not as bad. The needle is thin and doesn’t really hurt but no lie that medicine stings like a mother. Unfortunaltely for me, it quit working and I tried booster shots with prednisone and kept flaring. I decided I was done with injecting if it wasn’t working anyway. After my last shot I got a funky rash on my chest but it cleared quickly with an antibiotic type cream. That was a clear sign that I am now done with all the biologens and immunosuppressants. In the flare that followed, the pred never kicked in. After 4-5 weeks at 60mg/40mg and still in the bathroom well over 20 times a day, I started the GAPS diet. Within 2 weeks, I was down to 4-5 slightly more productive trips and NO blood. A couple of months into the diet I still didn’t feel great so I asked my doc to run bloodwork to see if I was missing something nutritionally. Before the results came in, I was in the hospital with fistula that abcessed and super high fevers. I had surgery to drain that and now I feel great. I am still on GAPS but have started adding in many foods like sourdough bread and eating out with caution and wise choices.

    All this is to say, medicine worked for me for 20+ years and gave me a great quality of life. UC was always in the background but was not the definition of my life. The last 4 years have been tricky and the drugs no longer work. So far, the diet has been key. I am waiting on results from the Prometheus test but am hopeful that I can keep my colon, use pred as needed and focus on my nutrition and faith.

    Sharon

    • Chris V. December 7, 2013 at 7:02 pm #

      Hi Sharon,

      Wow – what a story. I’m sorry the last four years were so rough, but I’m glad the diet is working so well for you.

      My doctor told me yesterday I’m ok to take Imuran. Frankly, I don’t feel much better about that than the Humira. I’m getting a second opinion in two weeks and am hoping to find a way to continue my remission a) without Prednisone, and b) without adding something too awful. I’m open to dietary changes, but right now I’m basically doing a diabetic lower-carb diet and am absolutely fine. Wish me luck.

      Chris V.

  4. Sharon MacArthur December 8, 2013 at 6:38 am #

    I just said a pray for you to have peace no matter which way you go :)

    Sharon

  5. Bethany December 14, 2013 at 7:38 pm #

    Hey Chris,
    I’m a little late in noticing this post and I hope you see it. I went through a lot of run around in trying medications before stopping on Humira. Although I know people have had their adverse reactions to it, in almost a year I haven’t had one. It is a biologic though much like Remicade so at some point it can happen. There is no saying that it will or when though. It is much like any another medication. I am a paramedic and work in an ER and regularly surrounded by very sick people and as long as I protect myself appropriatetly (gloves and mask if needed) I shouldn’t and haven’t had an issue thus far. I am also on Uceris because my body has become steroid dependent. Uceris is touch easier on the body and lot easier on your BGL (mine used to spike when I was on high prednisone and I’d never had issues with my blood sugar.) Imuran/6MP was a huge fail for me and found it to be more harmful than the actual Humira but I also am of the group that apparently carries the enzyme that makes you toxic too it. So it will really come down to what your body accepts and works for you. There is no one sure fit for anyone. Diet is always an option as well and people have had a lot of good results. (Again, fail, but my doctors are convinced I’m an anomaly.) I undersand and respect your fears on all sides, but I want to pass along that Humira isn’t completely terrible. I have had huge success with it and I was a step away from having my colon removed. According to all of my doctors to include my surgeon, I shouldn’t be as healthy or have my colon look as good as it does now. I hope you find your “niche” so to speak because that is what it really does come down to with this disease. There is no one fix all for anyone and sometimes it takes a couple extra steps to find it. I wish you the best of luck and that you and your doctors can find a plan that works best for you and your most comfortable with.

    Bethany

  6. Chris V. December 14, 2013 at 8:10 pm #

    Hi Bethany,

    Thanks for your informative response. I’m anxious to get off the Prednisone and plan to discuss Uceris with the doctor on Thursday. I hear what you’re saying about some medicines working for some people, and not all medicines working for everyone. I’m cleared to take Imuran, if it comes to that. Meanwhile I had some interesting developments this week: an allegic reaction (a rash) to the Wellbutrin I’d just started to take, and a flare caused by the protein powder I was adding to my fruit/veg shake. As soon as I put two and two together and cut out the powder, the flare subsided. My symptoms (and eventual diagnosis) last summer began a few weeks after I’d started using protein powder, so being able to single that out as a trigger – and removing it from the equation – makes me wonder if I might ultimately be able to control things with diet alone.

    Anyway, thanks for sharing your positive experience with Humira. I know if I have to, I can take it, and hearing that you – even as a medical worker – have been fine while on it gives me hope.

    Chris V.

    • Gail December 15, 2013 at 7:09 am #

      Hi Chris,
      You don’t mention whether you have any known food allergies but a lot of protein powders contain whey, so odds are you are intolerant to most dairy. Gluten and dairy intolerance seem to go hand in hand. They both are a cause of bloating and gas even in people without uc. Try cutting them out entirely (you’ll have to check every label) and see if that makes a difference. I think everyone should be tested for food allergies/intolerances to remove the guessing game and just concentrate on what is the optimum diet for the individual. Definitely, a change in diet (try SCD) is worth trying. If you can get to a reliable naturopath or similar alternative doctor, they may be able to help as well.

      Gail

    • Gail December 15, 2013 at 7:15 am #

      I forgot too – sugar is BAD! Bad for everyone. Limit sugar intake as much as possible, especially in the beginning.

      Gail

  7. Chris V. December 15, 2013 at 3:07 pm #

    Thanks, Gail – I think you make some great points. I’ve never been tested for food allergies and certainly have never reacted to any food or supplement the way I apparently have to the protein powder (which does contain whey). L-Glutamine is also listed among the ingredients, and I thought that was suppose to promote colon healing – it’s all a bit overwhelming. I plan to investigate further and am open to food allergy tests. I do watch my sugar intake, as you suggest, although that’s more because of the diabetes than anything else.

    Thanks for your comments!

  8. Mike from Ohio
    Mike H December 16, 2013 at 6:36 pm #

    Humira and Remicade (same stuff different bottle) is poison. I tried it, made me worse but I guess it was what led me to the J Pouch surgery. My Pouch is awesome, works great no issues at all since day 1. I have not taken a pill for UC in 12 months now and I feel great. Life without a colon is not that bad. Life with the temp ileostomy sucked but when they connected the pouch and took out the ileo life has been good, not one complaint. Dont be afraid to consider this route because from my experience the meds will quit working once UC find away around them and it will.

    Mike

  9. Chris V. December 16, 2013 at 8:03 pm #

    Thanks, Mike – you add further confirmation to my observation that no one seems to have anything bad to say about J Pouch surgery, or any regrets about having it. In part because of the many helpful responses to my post, I feel like I have a number of decent options to explore before thinking seriously about surgery. But should I get to that point, I hope my experience is as positive as yours!

    Chris V.

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