Side effects / adverse effects: posting about our experiences

Recently a thread was locked about forum members sharing experiences of our different medications. There were some strong opinions expressed. I want to share what I hope is constructive, to convey gratitude, and an affirmation to continue to post candidly about what we each experience. My posts have never been intended to scare anyone.

I have been allergic to several UC medications, but I don't regret taking any one of them - even remicade which gave me drug induced lupus and triggered neuropathy. Remicade quickly ended a severely disabling flare for the six months that I was on it. I wish I had done it earlier; I delayed nine months because I was afraid of it. In fact, if presented with the same situation, I would do it again - even knowing what I would have to recover from afterwards. (I did recover from lupus after a year but not from neuropathy, and that is ok. Maybe I would've developed it anyway....)

I was in the very small percent who had adverse effects from remicade. In fact they called it paradoxical adverse effects because it caused inflammation elsewhere. This was rarely documented in medical journals but we found cases. See long thread: 'Severe joint pain, stopped remicade, so sad.' Thoreau, Mrs Brady and others of us compared notes on what we were each experiencing, and sharing what diagnostic tests we could ask our doctors to do. It also provided essential support when we were enduring pains that we couldn't make sense of. So we felt less alone, and we empowered each other to persist and seek answers.

When I was allergic to mesalamine & 6MP, I didn't post about it. Most people do well on them. They were deemed to have adverse effects for me, not common or rare side effects. I couldn't tolerate them at all. I just turned to what was next for maintenance meds. I have posted about prednisone because it took a while to figure out how to handle it for me. Forum members helped a ton! (I've had a lot of Pred in order to recover from so many adverse effects as well as from UC flares as a transition to another drug. I am well aware of downsides, and each time decided to use it anyway.) There were also suggestions on what to take for probiotics and anti-inflammatory supplements. Even the best pads to soak up blood pouring out of my butt when flaring. I was comforted when I learned that many of us who try to go to work don't really eat much until dinner. All very useful. Some notes were very comforting when I was feeling stuck and so alone.

This forum has been such a valuable place to compare notes and do the essential sense-making that doctors aren't well positioned to do, because they aren't using the drugs or living with our daily limitations (like when we are flaring and can't function or leave home). I keep coming back here to be supportive of others who are struggling with the various forms of suffering from UC, knowing that each of us is making decisions every day about how to take care of ourselves. It's so isolating to have this chronic illness. I find reading about our challenges and offering what works - as well as what hasn't - have played a major role in my sanity and my being able to live with UC at its worst. (By contrast, I have posted on the asthma forum & have gotten little help there.)

I guess it's hard to know at times the intent behind a post. Please be assured I never intended to scare anyone or discourage them from trying something. I assume that's the case with most everyone who posts here. So I hope we can continue to be free to post what's going on with total candor - our fears, embarrassment, what's working & what isn't, requests for a reality check, guidance (as lots of folks here have years of experience and expertise), or just commiserate. The past several years have been especially difficult for me vis-a-vis meds that I wanted to try, had short-lived optimism, and then failed them. I'm glad that others have had successes with them.

I couldn't have gotten through this time without your support. Much gratitude to you all who have responded swiftly when I've posted and who will continue to post with kindness, respect, and compassion.

No worries contentprof and thanks for sharing your experiences. Good and bad experiences are often shared, normally a non issue.

Although occasionally topics do get contentious and often in unexpected ways. We're a support forum and it's important that we're all helpful of each other, and also supportive of each others individual treatment plan choices. As such, threads are locked when it becomes necessary and often it's due to heads getting too hot, it getting mean, and rules are broken. We're doing the best we can to keep the peace, and I understand it's not always a popular decision that everyone agrees with us when we lock threads. Often, these "why did the mods lock a thread?" threads, themselves, also get contentious and critical (end up carrying over the same conflict as the original or just turn into mod bashing). Hoping not, this time.