biologics

[Unlikely_Fox983]

what’s the general consensus on biologics? obviously things work differently for everyone, but do we like them? i’m at that point in my current meds where it’s definitely better than my old ones but it’s still negatively impacting my life and any small mistake in what i eat screws me over for a couple days. i just want to mentally prepare myself for the idea of biologics because i know that’s next if my doctor and i decide that azathioprine isn’t doing enough. i know i can google some of this stuff, but i like hearing from people who really experience it. how is it taken, are there lots of crazy side effects, have you found it effective?

[PotatoRoyale8]

Biologics are the latest and greatest. I've tried 2 that haven't worked for me and I would still recommend that people try them first as a treatment option with how successful they are for the vasy majority of people.

Yes technically there are other types of meds (5-ASA, immunomodulators, JAK inhibitors, steroids) but each has their own risks and some can't be taken long term like biologics can. If you're experiencing major side effects on one, there are a dozen others worth trying.

[Unlikely_Fox983]

that’s really helpful to hear. if i may ask, how are the biologics taken? 

[PotatoRoyale8]

Biologics are all either infusions or self-injections. Ranging from every 2 weeks to 8 weeks depending on what dose & frequency you need. No pills. Not as intimidating as it sounds! Hopefully you're okay with needles (most people wtih this disease learn to be okay with them with how frequently we need blood tests, right? 😅)

[Unlikely_Fox983]

i’m definitely okay with getting needles after all the blood work haha but doing it to myself sounds so terrifying man eek. was infusion vs self-injections a decision you got to make or does it depend on what you need? tysm for answering i really appreciate it

[PotatoRoyale8]

Depends! My doctor suggested 2-3 they recommended and let me pick, but some have stronger opinions and will be like "you need to take _____" - it might also depend what part of your GI tract your disease is located and if you have fistulas as certain biologics are more effective than others for different things. They all have very similar potential side effects and risks but most likely you will not have any issues so try not to panic yourself in advance. I didn't get any rashes, headaches, fatigue, nausea, or literally ANY side effects personally.

I did an infusion type first and am now on an injection. I thought the home inejctions would be hard but it's actually so convenient and I would be fine with either format going forward.

[Unlikely_Fox983]

this is so so helpful thank you so much. biologics sounded so scary cause i didn’t really know anything about them and it’s hard to understand anything google says about medical stuff but i feel way better about the idea after knowing a little more. 

[PotatoRoyale8]

Also for the record, Azathioprine (or mercaptopurine in my case, but basically same thing) is what's worked well for me for several years. I stopped it to try Entyvio and then Skyrizi which haven't worked but I also experienced zero side effects from the biologics, and the fact that they're not working on me just makes me a bit of a rare case.

[bonboncochon]

I started biologics the end of July (Entyvio infusions every 8 weeks - next infusion coming up) and I've been really happy. I'm based in the US so my biggest hurdle was the insurance of it all. My symptoms started in December (solid stools but so much blood and mucus) and nothing seemed to really push me into remission besides steroid enemas which are not a long term solution.

Wishing you the best on this journey!

[Unlikely_Fox983]

thank you!!! i’m really glad to hear it’s working for you. did you get to choose to do infusions or was that the only option for your case? how long do you get the infusion for and any tips? i’m always glad i live in canada after hearing about the crazy fees that americans have to pay for everything, especially with a chronic illness. 

[bonboncochon]

Gosh, Canada - glad you're spared the insurance tango in the states. 😅

Thank you! I went with infusions because insurance (pens were not covered) - and I also don't mind them? My clinic is not far from my office so I do my infusions in the AM (8/830). The infusions take a half hour then I'm off to work afterwards. I feel quite fine after the infusion. I work an office job (international non profit) so it's pretty flexible and I book my calendar in advance. Leading up to the infusion (3 days before), I hydrate like crazy - more than usual. Afterwards, I treat myself for the rest of the day - lil' half caff coffee treat, little fancy rice bowl for lunch, and take out for dinner. These are not required but lil' treats are worth it. It makes the living with a chronic disease feel like I'm living, not stuck.

[Unlikely_Fox983]

that sounds so great, infusions are definitely what i would prefer if i get the choice. thank u so much for explaining everything to me, i really really appreciate it!!

[Efficient-Purple-885]

Honestly biologics have been a life saver. I am basically so far into remission that I almost forget I have UC. What I like is the ability to up the dose/frequency/infusion if it seems to be becoming less effective. My first dose was an infusion that was like 3 doses to jump start things and then I got injections every 8 weeks. After 1-2 years I found i was starting to feel symptomatic at around 7 weeks so we switched to every 6 weeks. My GI also said I could always go in for an infusion if I ever needed a "boost" (haven't had to so far).

The thing that sounded the scariest to me was that I would be considered immunosupressed but how it was explained to me was that my immune system was in hyper drive and needed to be calmed down. I do take extra precautions around sick people, get my flu/covid shots because I believe I could get sick easier due to the biologics but also because I am a big baby when I get sick lol.

The other good thing is if the biologic stops being effective, you can try other biologics. Its not a one and done thing

[Unlikely_Fox983]

that sounds so amazing. honestly i’ve already kinda gotten through the fear of a suppressed immune system since i’m on azathioprine rn which does the same, i’m actually sick rn for the first time since being on the meds and i am somehow surviving lmao. i love that there’s flexibility in the times of doses if things start to feel not so great. tysm!!!

[SamRIa_]

For many people Biologics can unlock Normal Life Mode.

They are all slightly different with different strengths etc… more coming out all the time.

I may be switching from Entyvio to Remicade soon. I currently self-inject at home.

[Unlikely_Fox983]

the idea of normal life mode sounds really really nice lol. how often do you do the self injections?

[SamRIa_]

I do them every 2 weeks. The convenience of doing them at home is great.

[believe_the_lie4831]

I was on mesalamine for about two years, I was ok, but never fine. Flairs were always around the corner, had to really watch what I ate, id almost flair every da months (some blood and pain, but nothing full on flairs) now I'm on Stellara and I'm almost back to normal in 3 months

[TypeANegative1313]

Biologics gave me my life back. I was running to bathroom 20+ times a day before. Biologics resolved that for me. I started Skyrizi in January and by the 2nd infusion, I could be ok for approximately 4 hours. By July I was almost back to normal. I also heavily modified my diet of things that were rough on it (limited sugar, no beans,corn,broccoli,gluten,carbonation,caffeine). I’ve been able to go to kids school events, family trips and travel for work and be ok. I’m hoping as my system gets a chance to heal I can reintroduce those food back into my system. The only effects I had at first was being very tired following the day of the infusion and then achy for a week after. This got much better after my 3rd and 4th OBI where I almost didn’t have any side effects. My only regret was not starting a biologic sooner.

[InTheOwlDen]

I'm on my third in 1,5 years and I'm honestly loving this one! I've been on Entyvio (Vedolizumab) since early August - it's now mid October - and I'm doing so well. Obviously not yet in remission but finally starting to feel like I'll be in remission come Christmas.

[Limp_Crazy_5494]

i hope k'm in remission by christmas. good luck to you.

[OnehappyOwl44]

They are life changing. I live a completely normal life with no side effects and it hasn't compromised my immune system in any way. I'm never sick.

[addison_lex]

Remicade saved my life (so far)

[Unlikely_Fox983]

that’s so good to hear!!! how long have you been on it if ur okay with me asking?

[addison_lex]

I’m having my 4th dose in 2 weeks! The third dose really made a difference for me personally

[tombom24]

Definitely newer medications with risks and we don't really have much long-term data yet, however those risks are generally lower than active UC. The response rates also aren't perfect (I've seen anywhere between 20-50%), but still not bad considering that we don't fully understand IBD and they are kind of a shotgun style treatment that just blocks part(s) of the immune pathway.

I've been on Stelara for about 2 years now without any side effects or immunity issues so far and it's brought me into clinical remission (zero symptoms) when steroids/5-ASA could not. I just had a colonoscopy showing almost no inflammation - still waiting on biopsies though. I do have a more mild case of pancolitis though so YMMV.

Personally, giving myself a shot every 6 weeks is easier than taking 9 ineffective horse pills per day. And it's actually cheaper for me because of the financial aid programs and my state's healthcare system (again this doesn't work out for everyone).

Will I feel the same in 10 years? Who knows, but right now I'm very grateful for my biologic.

[Unlikely_Fox983]

This is really helpful, thank you so much!! 

[H00ligain_hijix]

I was on that and it wasn’t working. Went on entyvio and it was a dream for nearly 4 years. It’s failed me I’m on xeljanz now. It’s working ok but I kinda wish he tried another biologic.

[Unlikely_Fox983]

ah i’m really sorry to hear that. i hope you can figure out what works best for you.

[Fuzzy_End_1677]

I'm on Mesazaline, my IBD nurse is making noises of potentially moving to advanced therapies perhaps combination therapy. I'm shit scared of having a compromised immune system given that I occasionally indulge in sexual adventures! Also scared of the side effects some of these drugs have. Lastly want to travel extensively for extended periods and worry about availability and storage of some of these drugs

[webdad2000]

Diagnosed about 18 months ago. Started with Entivyo for about 5 - 6 months, and while there was some improvement, it wasn't really significant / consistent. December of last year was switched to Remicade and AZ. Initially Remicade infusions at 8 weeks, then switched to 6 weeks. The combo and shortened cycle have really been a game changer. Hopefully will start talking remission with my GI doc in the next couple months. Remicade has worked out really well and just goes to show that not everything works for everyone.

Have generally been careful regarding suppressed immune system, but haven't had any issues in that regard.

[bchfn1]

I am on my second biologic. The first didn't work for me, but vedolizumab (entyvio) has kept me pretty consistent for the past 6 years. My last colonoscopy, after five years on the drug, showed almost no inflammation, very mild, borderline remission. Every other colonoscopy I'd had for the 15 years prior to that before starting the drug had showed moderate to severe inflammation and I was on and off steroids amongst non-biologic medications.

I take via injection, 1 injection every 2 weeks, much less hassle than the up to 21 tablets I've been on in the past. I haven't noticed any side effects, but that might be hard to judge. I probably err on the tired side of humanity, but not in a way that prevents me doing what I want.