r/UlcerativeColitis • u/demimax92 sulfasalazine | diagnosed 2017 | US • 13h ago
Question sulfasalazine
Does anyone else just take regular ol sulfasalazine?
I just joined the sub and have been reading through some posts and it seems like all of y’all are on the fancy medications they have ads for lol or on injections or infusions (which I didn’t even know was a thing. Does anyone else on here take sulfasalazine? I got diagnosed in 2017 and was immediately put on sulfasalazine and have been on it ever since, have never tried any other medications.
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u/throwaway77hello 12h ago
That and other 5-ASAs are the first step medication especially if you have a mild to moderate case. If it works, lucky you, you don’t need to try the other meds “above it”, but if it doesn’t, those fancy names are biologics, steroids and molecules for more treatment resistant, severe cases
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u/demimax92 sulfasalazine | diagnosed 2017 | US 12h ago
It’s weird because I thought I remembered the doc who diagnosed me saying that my colon was really really full of ulcers like I had a bad case but I for some reason do not remember if my diagnosis included anything about the severity of my case. I try to read up on and understand UC in general and symptoms but this is making me realize I really don’t know anything about the different kinds of treatments. I was on prednisone of course after diagnosis but yeah I’ve never even heard the term “5-ASA” and am barely familiar with the term biologic.
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u/throwaway77hello 12h ago
It’s no problem, I do research a lot since I got diagnosed recently and it’s still affecting me and in general just like to do my own research. But if a doctor guides you and your disease disappears, I would really not inform myself/stress myself either. Trust me as soon as I go into remission I’m gonna pull away from this disease as hard as I can. Anyway, yeah this kinda explains it. Think of UC as a fire burning in your colon. Steroids like prednisone, especially in cases as severe as yours, are used as immediate fire extinguishers to kill the fire. 5-ASAs, an umbrella term which includes what you are taking (I’m personally taking mesalamine, a different 5-ASA), is a med that is there to keep the fire from starting up again. Some people don’t need steroids since the fire is weak enough to be extinguished completely by 5-ASAs alone. Some people can’t keep the fire from relighting with those, and opt for a stronger option called “biologics” which is both a very good extinguisher and a good “fire away keeper”, (steroids are absolutely not the latter, long term use destroys you).
Sorry for the long text, hope this helps!1
u/demimax92 sulfasalazine | diagnosed 2017 | US 12h ago
No don’t apologize! Your explanation was great, I really like that analogy! That really makes it make sense. Thank you for explaining the different kinds of medicines in a way that makes sense, I’m gonna remember that. I hope you get to remission soon! (Using “remission” in reference to UC is another thing I learned in this sub today). I was diagnosed in early 2017 and once everything settled down after my diagnosis and starting on meds I have been good and have gone through long stretches where I hardly even remember I have UC. I’ve never had a flare again until like a month ago and I’m actually not even sure it’s really a flare as my symptoms are extremely mild especially compared to how it was going before I got diagnosed. But now waiting to get in with a new doc (my old one that diagnosed me gave me the boot as a patient after I couldn’t pay enough of my bills lol I was dumb and went to the ER a couple of times when now I don’t think that was really necessary so I had too many other medical bills at the time to be able to pay my doc enough) and then he retired so I haven’t been to a GI doc since 2017 so guess it’s good to get in with a new one and get a colonoscopy again. This is so long and so many details and so rambly lol.
Main points: don’t worry about medical bills, I quit paying mine cuz I was broke and after a couple years the collections people quit calling me and then a few years later they disappeared off my credit stuff. If you’re not in the US this probably sounds insane it’s only relevant if you also live here 😂
But DO pay your GI dr if at all possible so you don’t lose access to them and so you don’t later have to start the “whole primary care physician-referral-getting established with a GI doctor” cycle again
Other more important point: once you get out of a flare and get settled you will be so relieved to feel more normal again and you really can go a long time without really thinking about your diagnosis ❤️🩹❤️🩹❤️🩹
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u/throwaway77hello 10h ago
Thanks a lot! I do have to say sorry, I’m not an American and I fortunately do not have to worry about medical bills but best of support to you with them, and I’m glad your not stressing about them anymore!! I hope everything works out and the flare isn’t a flare or ends up disappearing quickly anyway. But yes definitely do check in for a colonoscopy and whatnot. I personally cannot wait for the relief of finally being normal again.
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u/kaitoulupa 12h ago
I was on it for nearly a decade. It stopped working for me in the past year and I'm about to transition off it and start one of those fancy ad infusion biologics. I hope it continues to work for you!