Refusing biologics?

I have had ulcerative colitis for about three years. However, I have trouble staying in remission for long periods of time. My longest remission has been 8 months. I have tried colazal. Asacol, and lialda. My flares have gotten less severe each time, but I have had to always do some steroids. My doctor wants my next step to be biologics, but I am terrified to take them. I am already predisposed to cancerous moles, and the risk of skin cancer and lymphoma terrify me. My mom also has UC, and we have also talked about how it is much more active in the early years of diagnosis. Has anyone else turned down biologics because of their risk and made do with diet, stress management, different preventatives and steroids when needed?

If you haven't read all the stats on prednisone and biologics, do it, it will help take some of the emotion out of your decisions in the future. I agree with imagardener in regards to biologics. I'm in the same boat as you. I have a fear of biologics that I'm not sure I can overcome. I honestly think the people who market "biologics" should rethink the term "biologic." Something about it sounds scary. I also don't know if the risks are worth the mediocre overall statistical results. This is just my personal feeling on them, which contradicts the feelings of my GI and primary care physicians as well as many on this site whose opinions I respect.

I believe in taking proactive steps to control chronic illness beyond just taking medication. Over the past year of reading these posts I have seen several people use all types of "alternative" therapies to control their UC. It will take quite a bit of self-directed research and willpower on your part to find out if any of them work for you. While a lot of these anecdotes in regards to different DIY treatments may just be placebo, "placebo" effects are not just a figment of our imaginations. They are clinically measurable results from patients BELIEVING that treatments are working. Find something that you think will help you and run with it. Find doctors who will support your decisions.

As a side note, its helpful to include your medications and history in your signature.

i can't say i was trying to avoid biologics when i decided to really focus on my diet choices when the asacol quit being effective - it just seemed time - i suppose it was more of the what ifs that could lead all the way to the big S -

I have thought about entyvio, I may bring that one up. Doctor wants to do humira, but that one has the risks

Thanks everyone for your thoughts! Uniform Charlie, that's kind of my thinking too. I'm not sure the heightened risk is worth the not super promising chances of them working. Imagardener I use hydrocortisone enemas when flaring, but am thinking that using the mesalamine ones for maintenence may be helpful because a lot of my flares start lower and then go higher. I will try the curcumin too. I know the odds of the side effects are small, it's just hard to bring myself to get over them knowing I already have the predisposition to skin cancer. It is just hard to work with my doctor sometimes too, who pushes biologics and when I try to voice a concern won't discuss with me but says "just go get a second opinion." I'm thinking my next step is looking into another opinion from Vanderbilt or Cleveland clinic

It's a good point. Uncontrolled uc inflammation is far more dangerous than any uc medication. Colorectal cancer odds increase dramatically in patients whose inflammation isn't well controlled. Uc spreads in extent and severity when not well controlled.

iPoop said...
It's a good point. Uncontrolled uc inflammation is far more dangerous than any uc medication. Colorectal cancer odds increase dramatically in patients whose inflammation isn't well controlled. Uc spreads in extent and severity when not well controlled.

Completely agree; uncontrolled inflammation is worse and my understanding is the increased risk of cancer is only 1-2% higher than the regular population. You'll just need to keep monitoring and do the best you can. You could try Entyvio as it's non-systemic. Other alternatives are IVIG/rectals/natural supplements etc.

I did Humira and the swelling and pain in my joints was far worse than a flare. I stopped the Humira 2 weeks a go and I was told the side effects would remain for up to 6 months, Never again! I will stick with Uceris and Mesalamine enemas if needed. Biologics are not for me.

NiceCupofTea said...
I dunno why people think UC inevitably becomes super severe and out of control if you don't bang it on the head with the stongest immunesuppressants available. Only about 20% of people end up with UC classified as severe. The increased risk of colon cancer also only really applies to those with pancolitis and even then only if you've had it 10+ years.

FSLondon said...
My rheumatologist was quite resistant to putting me on biologics for an autoimmune arthritis that only responds to biologics. He was of the view that if I can manage without them, I should, as he felt the risk of opportunistic infections on them was quite high (he said the risk is 5% of all people who take them). That's a different concern than the one you raise, but worth considering.

Not sure what you've tried so far, but to answer your question many of us (but definitely not all) get relief from tinkering with diet and supplements and it usually can't hurt to give it a try. I've had quite positive results with SCD and curcumin supplements.

Words of wisdom from across the pond.

Coffeemate said...

NiceCupofTea said...
I dunno why people think UC inevitably becomes super severe and out of control if you don't bang it on the head with the stongest immunesuppressants available. Only about 20% of people end up with UC classified as severe. The increased risk of colon cancer also only really applies to those with pancolitis and even then only if you've had it 10+ years.

FSLondon said...
My rheumatologist was quite resistant to putting me on biologics for an autoimmune arthritis that only responds to biologics. He was of the view that if I can manage without them, I should, as he felt the risk of opportunistic infections on them was quite high (he said the risk is 5% of all people who take them). That's a different concern than the one you raise, but worth considering.

Not sure what you've tried so far, but to answer your question many of us (but definitely not all) get relief from tinkering with diet and supplements and it usually can't hurt to give it a try. I've had quite positive results with SCD and curcumin supplements.

Words of wisdom from across the pond.

As NCOT said, there seems to be a tendency to more quickly jump to stronger meds in the U.S. then in Europe. May it be partially because doctors are compensated differently for the meds they prescribe?

The UK healthcare system is known as the NHS, or National Health Service. Literally nobody in the UK would know what you were talking about if you called it the NIH.

Entyvio was launched on the same day in the UK and the US, so maybe not the best example to give of new medications being approved more slowly in the UK.

www.ukmi.nhs.uk/applications/ndo/record_view_open.asp?newDrugid=4688

Incidentally, for the record I was only giving my opinion on the topic creator's situation, before I start getting a reputation for being anti-biologics as well as anti-surgery (neither are true). There are some situations where I would go on a biologic and other situations where I would refuse. Everyone is different and has to make up their own mind on what they feel comfortable with.

Edit: Okay, having googled NIH I think you were talking about medical research organisations. The American NIH sounds equivalent to NICE in the UK, which sets national guidelines for evidence-based treatment.

Post Edited (NiceCupOfTea) : 3/30/2016 5:45:36 PM (GMT-6)

cat1211, we have kind of a similar situation. i was diagnosed 4 years ago. i reacted badly to asacol hd back in 2012 so spent much of that time not on medications. I handled my flares with salofalk suppositories, turmeric pills, probiotics. I also follow a strict gluten free diet, and when flaring, lactose free as well. I had a nice long year and half of remission in there, pretty healthy! However in the past year and half, I flared really badly 6.2014-12.2014, spent much of 2015 in a unstable remission, and flared up again in 11.2015. It got so out of control in Jan/Feb this year that I considered quitting my job, as it is my hours are greatly reduced. My quality of life is horrible--I'm at the doctors 1 day a week, work 3 days a week, and the rest of the time I spend trying to get the energy for all this.

I'm not sure exactly how bad your flares are--you said they've gotten less severe which is good (mine have gotten worse). But the fact that you need steroids each time is not good; your body can develop a tolerance to the steroids and may start to need more or longer courses of steroids to come out of the flares. Do you change your mesalamine dose based on flare/maintenance? If those work for you, maybe it's just a matter of getting a better dosage? Also, I agree with the posters above that rectal meds are a good idea here too.

I've recently decided to go with the biologics. It's definitely an individual choice though--I don't know how bad your risk is for those cancers or what your flares are like. I know for me, at this point I need the biologics as this disease controls my life and I can't do the oral mesalamines. If you can work out something better with the mesalamines you might be able to avoid biologics. But if you can barely go a few months without a flare, then it sounds like this disease is interfering with your life too much...and that the inflammation is really not under control, and like the above posters said, that is dangerous itself. again, you'll have to weigh out those risks and benefits for yourself.

I do recommend trying diet modifications, especially gluten-free, as gluten has been linked to gut inflammation, increasing gut permeability, and chronic illness. It might help relieve some stress on your system and allow the medications to work better. Turmeric is great as well, but there's only so far it can take you. Again though, as a person who would have refused biologics a year ago, I'm now making that decision and I'm looking forward to a chance at remision.

If you'd feel a second opinion is needed under that situation then you could most certainly get one. I wouldn't assume they're trying to give you an unnecessary medication just because they have an in-house infusion center. I think most know when it's time for a biologic, when everything else hasn't worked. Not exactly something that's unexpected or comes out of nowhere.