Posted 10/15/2019 5:23 AM (GMT -7)
>I know many of you have taken biologics. Have you had these side effects?
Nope. I've been on remicade about 7 years now, achieved my first remission thanks to remicade. I have not experienced any side effects and I am not any sicker than my normal. It has been a total game changer. I've been well managed over the long term with only a few rare and minor bumps on the road.
> I’m fine with using Prednisone short term every few years.
Not a good idea. Prednisone is the only medication that's guaranteed to give us irreversible side effects when used over the long term, nasty things like type ii diabetes, osteoporosis, glaucoma, and others. Long term is an intentionally vague term, some get these side effects after 6-8 months of continuous usage, others might take 1 year, 1.5 years, it varies wildly.
> I’ve read horror stories about the skin side effects, fatigue, and joint pains that sometimes continue even after the drug is stopped.
Ask yourself who fills out those Comment Cards in restaurants? It's always those who are angry as they had a horrible time (long wait, rude waitstaff, order was wrong, etc), it is the same about side effects on remicade and others. Nobody fills out the online comment cards when they are doing well and not getting side effects! So what you read online is very biased to the few who got the worst side effects.
I get it, many of us (present party included) worry about getting nightmare side effects when first starting a new treatment, we all worry that the worstcase scenario will absolutely be ME and our anxiety gets the best of us. A lot of needless worry and anxiety, and in a worst-case scenario it can delay our recovery and remission for a period of years, when taking that med would've given us a remission. The side effects do unfortunately happen to some, but ask yourself what are the actual odds? There's risks and benefits in all of our treatments, and I think our doctors due us a great disservice by not talking in depth about the odds of side effects. Here is a good read that helped me greatly when deciding to take these meds. Executive summary, the benefits far outweigh the risks.
And remember that long term inflammation makes us at greater risk of colorectal cancer, so doing nothing has a risk of cancer as well. Being well managed in a remission for many years and decades is our best way of reducing our CRC risks.
>Concerns me that some of you have gone through many of them with only short-term (1-2 yrs) efficacy once antibodies made to one biologic.
If somebody goes through a lot of biologics in quick succession then they are most likely destined for a colectomy surgery, and will be sporting a new j-pouch in the near future. It's an indicator of a refractory case of UC that's non responsive to all treatments. about 65% respond to any individual biologic. about 20% have a waning response and increasing the dosage regains response within the majority of them. Some posters here have been on remicade since the initial clinical trials, 20 years ago. I'm going on 7-years. Some posters 10 or 15 years on remicade as well. It can be a long term solution to many, and the assumption should not be that it will only last 1-2 years and then I am expected to go to another biologic since I will definitely fail it; false.
But let's play devil's-advocate for a moment, suppose you get only 2-years on remicade, then what? Well there is Simponi, humira, entyvio, xeljanz, and stelara that are available as alternative biologics, and if you got 2-years out of each, and a new biologic is released every couple years (as is the current trend) then I'd say you never have to worry!
Edit, added more details, I like writing novels :-p