So my doctor doesn't like how much inflammation I still have from my ulcerative colitis diagnosis a year ago. He is recommending adding in another med on top of the pills I'm currently taking, a Liadra generic.
He said I could likely do an injectable myself or an infusion. I'm leaning injectable just for ease of use as an infusion will require in office time.
I'm not needle phobic. I had a platelet disorder for a year requiring a ton of bloodwork weekly.
I guess I'm just looking for any experiences, words of wisdom, etc? I go back in 2 weeks to discuss options. I don't know if this is a forever thing or until we can get things better looking for next year's colonoscopy.
Post by DefenseAgainstTheDarkArts22 on Oct 15, 2024 11:24:54 GMT -5
I've been on biologics for awhile now using an auto injector and it has been super easy to handle. My needle phobia is around the "won't look for blood work but can get it done" level. Mine is a pen style. The needle is always covered. You uncap the top, put on your leg or belly, press the button and then wait for the injection to finish with a click.
The injection itself doesn't take long but I can feel like it sometimes. I have a few distractions ready like a good TV show and something to read.
I did get the syringe type for one med and had to have someone else do it for me. I couldn't get myself to actually stab myself.
I've had ulcerative colitis for 16 years and was diagnosed with microscopic colitis about two years ago. (Yes, it is rare, but possible, to have two forms of IBD.) Anyway, I have not had to go on a biologic med, but I was considering starting Entyvio about a year ago. While it is available as both an injection and an infusion, my insurance would only cover the infusion. I suppose it's because my health insurance is separate from my prescription drug insurance, and the medication cost is cheaper for the infusion, even though it's more expensive overall.
Have you tried a course of steroids? If so, that might be worth considering before you go on a biologic. Sometimes it takes that to get the inflammation fully calmed.
TMI ALERT Another option would to try rectal meds, especially if your inflammation is all in the lower part of your colon. Sometimes the oral meds don't do the best at treating the lower reaches of the colon. I would only try suppositories if the inflammation is pretty much limited to the rectum. Any higher than that and they won't get to all of it. In my experience, some gastro docs won't even recommend rectal meds because so many patients are hesitant to use them, but honestly they really aren't that bad.
I would opt for injectable as long as there's no anticipated difference in efficacy. Time is my most valuable resource apart from health, and injectable would save so much of it vs. an in-office infusion.
It's definitely different to do yourself vs. having it done, but I would bet on your adaptability. I haven't had to take injectable meds, but adapted ok to months of using lancets multiple times/day to manage gestational diabetes. Now I actually wish I could DIY when they prick my fingertips to test for iron at blood donations. I know exactly where to hit that won't hurt!
I got a bad site reaction with the injection and it really hurt. So I much prefer going for an infusion every three months over doing that injection monthly.
But I inject Wegovy weekly without the pain or reaction, so I’d say try the injection first and see how it goes for you.
cap, no steroids so far. Based on last year's tests and colonoscopy I'm on a high dose of the meds at the moment, but the inflammation is still a lot.
I can ask at my follow-up, but the doc yesterday seemed to think that based on the inflammation remaining adding the biologic was necessary plus the pills to start.
cap , no steroids so far. Based on last year's tests and colonoscopy I'm on a high dose of the meds at the moment, but the inflammation is still a lot.
I can ask at my follow-up, but the doc yesterday seemed to think that based on the inflammation remaining adding the biologic was necessary plus the pills to start.
It's not uncommon for docs to use biologics instead of steroids. Are you still having a lot of symptoms and do you know where your inflammation is located? And do you know what biologic the doc is thinking to prescribe? I'm mostly just curious. (And if you'd rather keep "poop talk" private, feel free to PM me.)
MH has Crohn's and has been on biologics for 14-15 years. He took infusions for the vast majority of that time. Due to an insurance change and other stuff, his medication got all jacked up this summer. He's in the middle of a transition to an at-home biologic now. He usually lost a day of work every 6 weeks (varies depending on the frequency of his treatment) to go get his infusion and recovery. He's so excited to not have that going forward. I would much rather do it at home if possible.
cap, I don't really know the answers. It's better than it was, but it's not normal. It came on so suddenly that I truly don't know and I have no family history. One day I took a new migraine med, two days later, I was like WTF is happening?
I have to go for bloodwork on my day off on Friday for them to check the infection levels, which were still high in April at the 6m mark.
It just says the inflammation is still there, but not a location.
leahcar, losing a day of work would be difficult. I do have scheduled telework days and they would work with me, but not my first choice. I do have pretty good health insurance.
My H recently had to get daily infusions for a week. It was such a pain the ass. I would much rather do it at home than have to set aside the time and effort for infusions.
Post by childofhiphop on Oct 15, 2024 17:01:31 GMT -5
I have had RA for 13 years found when I was going through fertility treatments and multiple miscarriages.
I also am a hard stick for bloodwork.
Self injections are no big deal. I always have a tiny bruise at the injection site for a few days.
Infusions were also not a big deal (if someone good did the initial poke). I always used the time to treat myself to a nice nap. The infusion room at my rheumatologist’s has oversized leather recliners, heated or non heated blankets and pillows and a snack basket. I could also work or do bills or something productive.
Post by DefenseAgainstTheDarkArts22 on Oct 16, 2024 19:19:38 GMT -5
If you decide to go the injection route, make sure you look for a copay card for whatever med you decide on. Many cover a good bit of your copay.
I'm not sure on this piece but wanted to throw it out there. Since an infusion is a service it would likely be billed differently than a prescription if that matters for your cost.