I've been on remicade for 12 years, it calms the inflammation almost instantly after the treatment. I suffer from UC and AS. It treats both & makes me feel 100% normal. However, if i go overdue on a treatment the symptoms come back. Remicade works well for me and the best piece of advice I can give someone taking remicade, eat as healthy as you can and understand that remicade doesn't cure you. It just stops the inflammation which lowers or eliminates your pain. It makes you feel like you can eat and do anything. Make sure you still focus on your health because if the remicade wears off the pain will come back. Use remicade to calm the storm then still try to fix the root cause. Heal the intestinal lining and pay attention to food alergies. Good luck everyone!
@blazedupp7089
4 жыл бұрын
What’s ur diet?
@beautybug2304
4 жыл бұрын
Thank you !
@widow1608
4 жыл бұрын
Thank you for sharing this! I’m twelve and I just got diagnosed with UC after getting a colonoscopy and MRI. I just started remicade and I’m getting it every two weeks (I believe it will go to 6). This really made me less nervous and your videos make me hopeful living with UC 😊.
@EffieSiamalekas
4 жыл бұрын
Yay I really hope it works for you! It's a life saver
@lee-mac
7 жыл бұрын
I'm 8 years into my infusions...you sure get used to these things. Got diagnosed at 5 years with Crohn's, I'm just turning 29 now. Remicade sure does change your outlook, I can eat whatever, whenever. My infusions take about an hour though at MGH here in Boston, no side-effects for me, guess I'm lucky, well worth it!
@EffieSiamalekas
7 жыл бұрын
yes! that's awesome. Remicade is a little inconvenient but the results are definitely worth it! good to hear that its still working for you 8 years later :)
@dustinray1840
Жыл бұрын
My Son is 5 and we are in the Hospital right now. He has UC and I am here to get opinions about Remicade.
@TostitosMangoSalsa
6 жыл бұрын
I’m about to start remicade and I didn’t know what to expect, but this helped thanks
@mr.jiveman3213
5 жыл бұрын
Azazel Potato expect it to work! Good luck
@veryhannah
7 жыл бұрын
thank you so much for this video!!! I am starting Remicade very soon & videos like this are helping me out, mentally, sooo much!! really, thank you!!
@EffieSiamalekas
7 жыл бұрын
awesome! hope it goes well for you!
@dijonayjones4541
5 жыл бұрын
Hannah Horton how Is it now?
@cinna8474
4 жыл бұрын
Hey! I just found your channel but I have crohn's disease and started remicade this year! I missed my last infusion but it has worked WONDERS for me so far!
@EffieSiamalekas
4 жыл бұрын
it really does! Literal life saver :)
@elbabalao
5 жыл бұрын
i have a loved one who was recently diagnosed with UC and hasn’t responded to the initial treatment has now been approved by the insurance company for remicade treatment. your video was so helpful to understand how it works and to know what to expect. thanks so much for putting yourself out there and sharing. i’m sure we aren’t the only ones to have been encouraged by video. thank you!
@EffieSiamalekas
5 жыл бұрын
oh im so happy to hear this! Thank you for the comment
@leannemeyers81
7 жыл бұрын
love your channel! I also have UC & have been on remicade for about a year; it has worked wonders for me!!
@thunderstrike-rw4hn
7 жыл бұрын
Leanne Meyers very happy to watch!😎..,it's interesting about your life
@EffieSiamalekas
7 жыл бұрын
+Leanne Meyers yay so glad to hear!
@thunderstrike-rw4hn
7 жыл бұрын
I will send you a link to a documentary. Iam watching this week might be a big eye opener for you! Might even save you going through alot what you do now ....no guarantee but should have a look for your self....😎
@Jaysen6740
7 жыл бұрын
This video is very helpful! I've had UC for four years. Was in the hospital for seven days when I had my first flare. My entire large intestine was inflamed. I was put on 60mg of Prednisone and Asacol. It put me in remission for about three years. But February I started having problems again and have been fighting it since. Now it's mostly the sigmoid and descending colon that's the problem, but it's been a big problem. My doctor is putting me on Remicade now since other things aren't really working. I've been nervous about saying yes to it. But your video helps. I'm not scared of needles. I'm just worried about the possible side affects and what may happen over long term use. Hopefully it all turns out ok. Thanks for sharing your story. It helps knowing you are not alone. Keep posting!
@EffieSiamalekas
7 жыл бұрын
glad this was helpfull! did you decide to try it out??? hope you're feeling well now!
@dijonayjones4541
5 жыл бұрын
Jaysen Gill how are u feeling now
@danfrankenhoff7794
7 жыл бұрын
I'm 35 with uc. I did the remicade 4 hr treatments back in 2014 but I had horrible side effects. I'm glad it helped you get better! If you ever do have any issues check into a food allergy test. That's what I ended up having to do because I'm allergic to every medication that's used to treat uc but staying away from foods I'm sensitive to got me into remission and I had a really bad case. I wish you good health!
@reiyawiles5906
7 жыл бұрын
I have Ulcerative Colitis as well, and I am 14 years old, I get my remicade infusions every 8 weeks, and I just wanted to say thank you for sharing your story! I am su describing :)
@EffieSiamalekas
7 жыл бұрын
Oh, Thank you Reiya! I hope remicade is helping you! How are you feeling? Yes - mine used to take 4 hours too! But ive been going a lot so they sped mine up. Soon you'll be a pro and it will get faster for you too!
@reiyawiles5906
7 жыл бұрын
Oh my goodness! Thank you for replying! I meant to say, subscribing btw... And I am actually not too good, I am constantly sick, so... idk. But it is auto-immune disease, so it's expected. Lol. I love you so much! Thank you for replying!
@NatalieJeanMac
7 жыл бұрын
Thanks so much for sharing your experience with UC. Your videos are so helpful. I've had UC for about a month now, although it took a while to diagnose and they couldn't admit me to hospital until after my wedding, otherwise I'd have had to cancel it. I've been out of the hospital for a week now and on prednisone but my symptoms have worsened so I'm getting my first Remicade infusion today! I hope it goes well. Thanks for the information.
@EffieSiamalekas
7 жыл бұрын
ahhh I hope your wedding was amazing (UC and all!) that is quite unfortunate, but its great to hear you were finally diagnosed! I hope remicade is working well for you :)
@Drea_A
5 жыл бұрын
I cried when my Dr told me I was going to start doing these infusions bc I had no clue what it was & my only exposure to 'infusions' was cancer related. Bad correlation! But seeing this made me feel better about doing my first session soon. And the tips are helpful, a poncho is a great idea! Thank you.
@EffieSiamalekas
5 жыл бұрын
Glad I could relieve some of that stress for you! They might be a bit scary at first, but you get used to that needle so quickly. you'll be a pro soon!
@JAYZ999
3 жыл бұрын
I am in med school learning about infliximab (Remicade), and in pre-clinical years with the lack of real world human interaction and with the hundreds of diseases that get thrown at us we sometimes forget how ‘real’ this all is. So thanks for sharing.
@EffieSiamalekas
3 жыл бұрын
My pleasure! Thank you so much for watching :)
@carlodefilippi6914
7 жыл бұрын
I've been under Infliximab for two years with very good effects, I hope Remicade is working fine for you! Ciao!
@EffieSiamalekas
7 жыл бұрын
+Carlo Defilippi that's amazing. Yes it's working really well for me so far :)
@Dominus_Augustus
7 жыл бұрын
I have Crohn's disease and my insurance can only cover me in a way that I have to take humira for a whole month before I can switch to Remicade. And then I have to take Remicade for a month before I can move on to the newer, more bowel concentrated Entyvio. The most alarming possible side effect of Remicade and Humira is a rare, fast growing cancer called lymphoma that mostly occurs within male teens and young adults who take them (of course I just so happen to be a 19 year old male). I haven't read anything about Entyvio doing the same thing from the time I write this, so I wish I could just start with that. A little suspicious how these insurance companies work. Hope you feel better!
@EffieSiamalekas
7 жыл бұрын
+Brandon Cifer yeah it is pretty strange how it works! Entyvio costs the most, so insurance companies need to see that you are unsuccessful with the medication that costs less before they dish out the cash to pay for entyvio. I know it works great, I talk to a lot of people that use it. The infusion is a lot faster too (like 30 min, compared to 2-3 hours of Remicade), so that is a pretty great benefit. I did the same thing and cycled through all the 5-asa's while I was in the hospital before I was put on Remicade. After entyvio came out, I debated actually switching to it, but there is a small chance I could flare during the switch, so I plan on staying on this one for as long as I can!
@anthonytorres9900
4 жыл бұрын
I’m going for my first infusion today for my UC literally in about 1 hour 😩 thank you for your video
@youngmocha6757
4 жыл бұрын
Hope it worked for you. How are you feeling now?. Blessings!!
@preparedliving
4 жыл бұрын
I am starting treatment this week will be my first go around thanks for the video and tips
@EffieSiamalekas
4 жыл бұрын
Good luck! Hope it works well for you!
@EM-ts3zq
6 жыл бұрын
I’m about to start remicade for UC in about a week! Thanks for sharing your story :) it put my mind at ease !
@EffieSiamalekas
6 жыл бұрын
My pleasure!! Good luck with remicaide!
@MsMarilyn1234
3 жыл бұрын
I have my infusions starting next month. I am petrified. Thank you for documenting your journey. I definitely feel more prepared.
@EffieSiamalekas
3 жыл бұрын
You got this! No need to be scared - feel free to message me if you have any questions!
@ablair33556
3 жыл бұрын
I am about to have my first and I’m scared too , how did yours go ?
@ladynet8383
7 жыл бұрын
Hi Effie, my 14 year old son was just diagnosed with Crohn's disease. His doctor has started him on Remicade too. Thanks for sharing.
@EffieSiamalekas
7 жыл бұрын
Oh I'm sorry! I am still in awe when i think about how strong young kids must be to have to deal with this illness. Not only does it hurt physically, but it can be so embarrassing to talk about! I hope he stays postive and that remicade works for him as well!
@thunderstrike-rw4hn
7 жыл бұрын
thanks for sharing your life and thought s with us ...😁😁😁
@EffieSiamalekas
7 жыл бұрын
+thunderstrike2525 onslaught2015 YOU'RE WELCOME! thanks for watching :)
@thunderstrike-rw4hn
7 жыл бұрын
No it's important as you are so I definitely watch!😁
@eb5627
3 жыл бұрын
My appointment is this Friday the nurse told me it’s going to be 4-5 hours looking forward getting better
@reiyawiles5906
5 жыл бұрын
Hi again! I have been just watching some reminder videos and I remembered your channel, so I revisited your reminder video. I have noticed that last time I watched this I was just starting and I was going in every 8 weeks! I've been going every 4 for a while now and that works a lot better for me. It took me like 5 hours before for my reminder but now it takes like 2 hours! So I've been getting better and better. I have 2 good veins. One on my upper forearm on the top of my arm, and then on the inner forearm are my only good spots 😂. Always my left arm. And my hands NEVER work. Ugh it's so annoying. But I LOVE your channel so much and you have been so inspiring to me and it feels so good to be able to connect with someone. I'm doing my senior project on UC awareness and I want to interview some of my reminder nurses. I think it would be awesome! You would be a great person to connect with for Remicade. Thank you for being amazing! ❤
@EffieSiamalekas
5 жыл бұрын
Hey Reiya! Good to hear from you again! Glad you're getting used to the remicaide visits! It definitely gets so much easier with time. Good job! I think that would be an amazing project. I'm always in for raising awarness about UC! The more you talk about it, the more comfortable you get, and so do the people around you! Let me know how the project goes! Talk soon
@VanMan89
Жыл бұрын
I appreciate you taking the time to make this. I start tomorrow morning...
@humaarshad5849
5 жыл бұрын
I just came home from my infusion...I was just looking up random infusion videos and came across your channel. Very informative..I get mine done at Millcreek clinic in Mississauga and they’ve got the best recliners which is why most people dose off. I’ve got ankylosing spondylitis and chron’s and remicade has definitely improved my quality of life; I’ve been doing it for 4-5 years but I started doing it for an hr and a half cuz I can tolerate it now and been on for a while so it’s super awesome to see another person in gta and making videos to inform the rest of the world 🙂
@EffieSiamalekas
5 жыл бұрын
yay remi buddies
@ruiking9441
3 жыл бұрын
ive been scared to do Remicade but seeing your video made me feel a lot more prepared . Thank you for this :)
@EffieSiamalekas
3 жыл бұрын
That's so awesome to hear!! Hopefully by now you've had a few infusions and it's really helping you!
@AdamMcCook
6 жыл бұрын
Thank you, diagnosed this month. Prednisone not working Remicade next week. I really appreciate it.
@EffieSiamalekas
6 жыл бұрын
How's remicaide working for you???
@WalrusGamingNetwork
7 жыл бұрын
Hey effie, good job on your videos, I also have UC and its very interesting to see all the threatments out there, personally is difficult since I live in a place where threatments like that are expensive (central america) currently Im on Mesalazine. Looking forward to see your future videos :)
@EffieSiamalekas
7 жыл бұрын
+Walrus Gaming yeah they are so expensive! I'm sorry you aren't able to get remicade :( I hope you're doing well!
@jasonmontez5352
3 жыл бұрын
I start infusions in July ! I’m jus waiting for my insurance to approve it ! Wish me luck they tapered me off mesalamine due to such bad side effects that I was experiencing so fingers crossed 🤞 it’s a pain to live with UC I’ve had UC for roughly a year now and it is def a trial and process! It’s crazy how they charge ridiculous amounts for a disease we have no control over what so over at all! It’s the big pharmaceutical companies jus racking up their money it sucks but all we can do is have faith and keep on pushing 👌🏻
@EffieSiamalekas
2 жыл бұрын
How have your infusions been going??? Are you finding that it's helping with your symptoms???
@jasonmontez5352
2 жыл бұрын
Hi ! Long story short I had a lot of issues with my insurance and decided on Humira with a no cost fee 👌🏻 best decision ever getting on humira I’m taking 40ml Injections twice a month and my life’s jus been a lot better hardly any symptoms besides a constant runny nose but either than that I’m functioning perfectly there’s no blood at all anymore which is a huge plus lol and I use the bathroom like 2 times a day which is alot better than having to use it 8 times a day. I hope it’s the same with others if they get on humira
@jellyo8241
7 жыл бұрын
Omg ahaha, when you said "I watch them put the line in, the full thing". In my head I was like that is me when they take blood, put in a line into me and injections. Glad to know I'm bit the only one that finds it cool!
@EffieSiamalekas
7 жыл бұрын
+Jellyo haha yeah its so cool!!!
@abdullatifadnan5745
4 жыл бұрын
hey Effie, do you take Remicade on a regular basis every six weeks or do you stop taking it when u get into remission and take it back again when pain symptoms come back again?
@EffieSiamalekas
4 жыл бұрын
Hey! It is ongoing every 6 weeks. If I stop, the inflammation is very likely to come back and I don't want that! Haha
@adventureswithcrohns9778
4 жыл бұрын
I'm pretty sure I've watched this once before but I was doing some digging on filming Remicade infusions and came across it again. I've been on Remicade for 4 to 5 years now, 600mg every 4 weeks. Anyway, it's too bad you couldn't film it. I'm hoping to film an infusion and as much of a colonoscopy day as I can for a self funded documentary I'll be making over the next year and a half. In the summer of 2021 I'll be cycling across Canada, Victoria to St.John's, filming the entire ride and hopefully raising some awareness for Crohn's! I noticed from the clinic door you're in Oakville? I'll be riding though there on my trip, it would be great to meet up for a chat about your journey with Crohn's and maybe swap stories. Even better if you want to hop on a bike and chat on the fly! So yeah, if you're interested in that, let me know. I can give you some more details and what I hope to convey with the documentary! Either way, you gained a new subscriber today!
@EffieSiamalekas
4 жыл бұрын
That sounds awesome! IM IN!
@AJ-ly8si
5 жыл бұрын
I have chrons too and get remicade so I know what your going through
@EffieSiamalekas
5 жыл бұрын
great! it really does help so much!
@gavinprescott621
4 жыл бұрын
I have my first infusion in a couple of weeks and boy am I nervous
@ablair33556
3 жыл бұрын
@@gavinprescott621 how did it go I’m about to go for my first one
@gavinprescott621
3 жыл бұрын
@@ablair33556 it went very well and its was easy and painless, I actually switched from remicade to humira just because I got some super rare symptoms and I was forced to switch. One thing to do is bring something to do since It takes awhile or bring some food you also may have really bad headaches for the first couple times, they gave me some Tylenol before but I'm not shure if they do that everywhere else.
@ablair33556
3 жыл бұрын
@@gavinprescott621 cool, Thank you so much for answering me !
@shawannaleonard1610
4 жыл бұрын
I was just diagnosed with UC I also habe PSC . Found your channel. Thanks
@emmad5201
6 жыл бұрын
Thank you for this. Just got out of the hospital and diagnosed with UC but the prednisone isn’t working so have to start Remicade in the next couple days, really hoping it works out for me!!
@EffieSiamalekas
6 жыл бұрын
Hey Emma! I really hope it works for you too! It will take a couple doses to kick in so dont give up on it! Let me know how you're doing!
@emmad5201
6 жыл бұрын
Effie Siamaleka thank you!! after the first dose i honestly feel so much better!!
@EffieSiamalekas
6 жыл бұрын
Yay!!!!
@todd1292
7 жыл бұрын
diagnosed left side pancreatic UC at age 20. at age 30 i figured out how to cure my UC. yes cure. took 5 years to do so but after taking a regiment of a certain mineral enriched clay along with a banana plant protein shake heavily for 6 weeks and reducing periodically for 1 st year until now i take one time once a month. i have absolutely normal bowel movements, eat anything, no sign of UC. i have taken zero meds since i was 30 and im now 46 healthier than ever. thats my story not sure if itll work for anyone else. my belief why autoimmune diseases such as UC attack the body (flare ups) has something to do with mineral deficiencies. the clay i use is simply the means used to keep minerals in the intestines until it starts to work instead of being expelled out of the body too soon due to inflamed intestines. if that makes sense
@rashasarandah1695
7 жыл бұрын
Todd Santucci more info on this??
@todd1292
7 жыл бұрын
Rasha Sarandah... i experimented for years trying to mask my UC from my immune system. i believe the key to curing/treating UC isnt by trying to control it using any type of medication... the key is to actually hide/mask the autoimmune disease from itself thus tricking it into not attacking itself. the approach taken by doctors is all wrong. the only way to cure an autoimmune disease is to actually hide the symptoms from the immune system. i know it sounds crazy but its not. flare ups are the body continuous attacks on itself... hence autoimmune disease. if u hide the flare up then the body does not recognize it to be one so then it will actually stop as fast as it started and over time/years it (UC) altogether just simply disappears. its rather simplistic but the regiment i do is too complicated to explain here. basically clay serves as the masking agent while the minerals and nutrients within the protein drink embedded within the clay feeds the body. at first the clay will act and feel as tho it is not working but there was a particular dosage i took to make sure my body accepted the clay. if taken improperly then the clay can actually hurt your intestines. keep in mind the remedy is not just the clay... its the combination as a whole that makes this work. there is discussion about clay on other forums but i believe many are not using clay correctly which might be the negative responses by some. potassium/bananas is a big part of my regiment also. trust me... im extremely healthy now for over 15 years... i believe this would work for anyone with UC... not sure about any other autoimmune disease. i followed my recipe strictly for a year and after that i might now take it once a month. i eat anything i want too. oh... And im not selling anything. gladly give u my recipe. toddsantucci@yahoo.com
@rashasarandah1695
7 жыл бұрын
Todd Santucci just sent and email. Thanks!
@lucax8934
7 жыл бұрын
I take remicade for two years now and I hope it works for you too ❤🙂
@ducciboi
7 жыл бұрын
Really hope this works for me. I've been suffering a really bad flare up for a month and I was suppose to get my infusion awhile ago but incompetent doctors sent in the wrong order/results to the infusion place. Been calling both sides pretty much daily but they can't seem to sort things out. I'm pretty much in bed every day having to painfully use the bathroom more than 10 times. Just have to truck through it and hope it will end my suffering.
@EffieSiamalekas
7 жыл бұрын
+ducciboi hopefully they sort it out soon! Good luck with Remicade!
@ducciboi
7 жыл бұрын
Actually already went through 2 infusions by the time you commented! First infusion made me feel a bit better but then after a week started getting extreme butt pains from ulcers and had to sit on a doughnut cushion while losing lots of blood in the toilet. Had my second infusion a week ago and now I'm feeling pretty great. No more butt pain or blood and my bowel movements had slowed down and became more bulkier. I'm still getting diarrhea but hopefully it will get better after my third infusion next month.
@EffieSiamalekas
7 жыл бұрын
ducciboi awesome! so good to hear. it will get better :) I remember it took a few infusions to start working on me too!
@queenofdramatech
2 жыл бұрын
This will definitely help me. I have mild UC controlled by Lialda but Enteropathic Arthritis which is secondary to the UC and requires the biologics (Simponi now but it is not working). I am considering Remicade for my next medication. The only thing that causes me anxiety is the idea of the medication burning. I had a medical trauma related to burning medications in my past and if this medication burns, it will be a no go for me unless they can knock me out before it starts.
@EffieSiamalekas
2 жыл бұрын
HI!! I've never felt any burning sensation with Remicade. It just feels a bit cool from the saline.
@queenofdramatech
2 жыл бұрын
@@EffieSiamalekas OMG phew, thank you!!!! That is amazing!!!!! Makes everything so much easier!!
@axeskivster5810
3 жыл бұрын
17 years old here, I was diagnosed with UC when I was around 10. I'll be taking Remicade pretty soon and am quite nervous xD
@Ownd4h3r
6 жыл бұрын
I will be starting my treatment thank you for this video. Gees i hate I V. :( but I guess I’m going to have to get used to it. Hopefully the treatments can help my Crohn’s.
@EffieSiamalekas
6 жыл бұрын
Yes you will get very used to it, and then very curious about it, then you will think it's the coolest thing ever! I hope your treatment goes well and helps you!
@Montana2006
4 жыл бұрын
I also deal with UC and get Remicade infusions , I made a mistake and skipped an appointment , will never do it again 😖 the stomach pains are unbearable
@EffieSiamalekas
4 жыл бұрын
Oh man! I wouldn't dream of skipping an appointment. Pushing it a few days is fine but not skipping it altogether!
@blakesanders8893
3 жыл бұрын
I'm going for my first time today
@ablair33556
3 жыл бұрын
How did it go ? I’m having my first next week
@Abbieprosee
7 жыл бұрын
I have Juvenile Arthritis and I would love to have remicade instead of methotrexate injections every week but idk if they do them here in England :(((
@wtfnews7300
6 жыл бұрын
Oh nevermind you just answer my question lol thanks your so awesome i start remicade soon Great info!
@EffieSiamalekas
6 жыл бұрын
haha thanks for watching!! good luck with remicaide! :)
@re2962
6 жыл бұрын
Starting remicade Soon! I've had UC for 8 years now and I'm not in remission Thank you for sharing 🙆
@EffieSiamalekas
6 жыл бұрын
Yay! I hope it does good things for you!
@re2962
6 жыл бұрын
Hope so too!! I hate this disease thank you for your well wishes 😘
@ryantheman27
11 ай бұрын
Am doing this now
@izaaksmifsud3755
5 жыл бұрын
Hi Effie , can you do physical excercise like swimming while you are on remicade or going to the gym maybe ? 😌
@EffieSiamalekas
5 жыл бұрын
Yes of course! It's important to stay active and healthy :)
@reiyawiles5906
7 жыл бұрын
Oh, and mine usually takes 4 hours!/Forgot to mention that.. :)
@ativ55
7 жыл бұрын
Can you do a video on medications you take regularly? I also have UC and i think it would be interesting what meds you have been on and how well they worked
@EffieSiamalekas
7 жыл бұрын
+Alicia Tivoli yes! I'm actually going to try to upload one tomorrow about all the available meds for UC and how they all work!
@jacquelinesmith-jackson2815
6 жыл бұрын
I also have other disabilities like Cerebral Palsy and shunts and I have Juvenile Rheumatoid Arthritis and throughout my childhood I have had many brain surgeries. I also have lots of other disabilities. 😄😄😄😄😄😄😄😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃😃 Love ❤️ you lots!!!!!!!!!!!!! 😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😛😛😛😛😛😛😛😛😛😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝😝
@DAS-io2tq
5 жыл бұрын
Getting remicade for the 1st time next week. I am pretty nerves. Thnx for the video
@EffieSiamalekas
5 жыл бұрын
How'd it go???
@DAS-io2tq
5 жыл бұрын
I found it very exciting the first time, but it didn't mean much. I was very tired of it and was yawning through the entire treatment. I think I'll just go to sleep next time.
@EffieSiamalekas
5 жыл бұрын
Haha yeah I felt the same way!! The Benadryl they give you as a pre med knocks you right out, and even faster if they give you Benadryl through the IV! I just stopped taking all my premeds, so I stay awake and work during my infusion, and I can drive myself home after :)
@dustinray1840
Жыл бұрын
My Son is 5 and the Doctor wants him to start Remicade just because of the severity of his UC. I’m worried as a parent with him being so young.
@maramanzano6534
2 жыл бұрын
Hi Effie good day! After the 1st infusion, did the loose stool and bleeding stopped already? Or if not, after how many infusions did you finally reached remission? Thank you
@tsaminamina_eheh
3 жыл бұрын
Hi Effie- Thank you so much for the video. I was curious to know whether you have the option to choose the biologic in Ontario? The reason I ask is that I am considering moving to Canada, however, I currently take Entyvio (Vedolizumab) and would like to continue taking this in Ontario. I know this question would be bases suited for a medical professional, however, I don't have a medical card yet so I can't consult an Ontario-based gastro consultant.
@EffieSiamalekas
3 жыл бұрын
Hey Karan! Yes in most cases you and your doctor make the decision together on what medication to take. If you're on Entyvio already, I don't see why there would be an issue with staying on it (unless there is an insurance issue or something). Typically doctors don't like to switch patients for no reason.
@jacquelinesmith-jackson2815
6 жыл бұрын
I was on Remicade for 1 year and after that the medicine made me sick.
@jessicanegron9558
6 жыл бұрын
Your video was the first one I saw after being diagnosed with ulcerative colitis. It great to know that I’m not alone. I am scared. I’m currently on budesonide and mesalamine. I was on something else but it wasn’t working. My doctor says it only on the left side. But with these new meds I sometimes feel the pain. Should I watch what I eat? I notice coffee seems to not do me to well -.-.
@staceypeterson2817
4 жыл бұрын
My name is Dan (staceys husband) i was told yesterday i needed to start having remicaid treatments and yours was the first article I’ve watched. Thank you it helped me a great deal. But i am also wondering how my life is going to change having a weak immune system for the rest of it? Is there things i cant do?people i cant be around? Or does life continue on as normal? I’m going to keep researching.. thank you
@EffieSiamalekas
4 жыл бұрын
Life has not changed for me in terms of having a weak immune system. Just excercise, get sleep, drink lots of water and help your body out by giving it all the right foods to have the best immune system you can! :) Good luck!
@wtfnews7300
6 жыл бұрын
Do you get nauseous or sick to your stomach, any hair loss!?
@EffieSiamalekas
5 жыл бұрын
I feel completely normal after my infusions. I had hair loss when i was on prednisone but not from remicaide
@hinglemccringleberryjrsrpa9728
4 жыл бұрын
Im at one right now
@tsaminamina_eheh
4 жыл бұрын
Hi Effie, I'm curious to know how much remicade costs in Canada, and whether residents/citizens get a subsidised rate via government or state funding schemes?
@EffieSiamalekas
4 жыл бұрын
remicaide costs about $1000 per bottle (i take 3 bottles every infusion). Some people have benifits that cover it, and some people qualify for other drug programs (like trillium) and pay a deductable every year based on their household income.
@tsaminamina_eheh
4 жыл бұрын
@@EffieSiamalekas Thanks for your swift reply Effie. If you don't mind me asking, why do you not qualify for Trillium? It's just that I am considering relocating to Ontario, and having looked at the requirements, I assumed I would be eligible (i.e. after a few months of relocating), but there may be something I haven't considered...
@EffieSiamalekas
4 жыл бұрын
@@tsaminamina_eheh I do qualify for trillium! I have a small deductible at the end of the year :)
@tsaminamina_eheh
4 жыл бұрын
Got it- thank you very much Effie. Also just want to say that my mother watches your videos (almost) daily since I've been diagnosed, and your stories give her and I great hope and relief. All the best with UC going forward, and hope to see more of your videos 🙂
@rebekahrodriguez4084
6 жыл бұрын
Have you had any side effects like hair loss from Remicade? My doctor wants me to take it I️m running out of options but im very scared
@EffieSiamalekas
6 жыл бұрын
No I haven't had any side effects from remicaide actually! Don't be scared. It's amazing. Ask him about entyvio or stellera! Those ones are newer and not as time consuming as remicaide
@clayackerman6119
6 жыл бұрын
How are you doing with this med now? I am supposed to start this soon and honestly I’m scared. Not of the procedure but of the potentially fatal side effects. Has this med made you feel better? I’m very curious as to your progress. Thanks for your time and thank you for the vids.
@EffieSiamalekas
5 жыл бұрын
Hey Clay! Honestly, this medication has been a life saver (literally! - ahah). Have you started yet? The benifits greatly outweigh the risks with remicaide.... I've been feeling great and the medication makes me feel completely normal. I'm also vegan now, which i think helps a lot!
@anitaa2696
6 жыл бұрын
Hey! Thanks for your tips!!! Did you have to take any immunosuppressant drugs before remicade?
@EffieSiamalekas
5 жыл бұрын
I was on prednisone for a few months. and remicaide didnt so well until i paired it with imuran. after a few months, i went back to just remicaide and its working great now!
@carlejferrancullo5254
3 жыл бұрын
thank u for the advice. ive been taking mesalazine for a year but it seems like it only works if partenered with steroids. but taking prednisone makes my self steem very low. im just wondering why my doctor never talked about this remicade thing
@EffieSiamalekas
3 жыл бұрын
Yeah that's interesting... You should mention it - it doesn't hurt to ask! There are lots of biologics available so you have some options. It's important to take control of your treatment plan, and ask questions and do your own research! good luck!
@gunit6815
4 жыл бұрын
I got diagnosed with UC at 12 started on prednisone and asacol and after no prednisone it switched to azathioprine and I am currently 33 went untreated from 2007 to 2019 as I was a former smoker that kept it in remission, I quit smoking and all hell broke loose. I hope my Doctor will put me on this eventually. Mezavant alone didnt seem to help very much. Started azathioprine alongside the Mezavant. I do feel better but not 100%. I just saw my gastro specialist yesterday, he wants another colonoscopy to see how things are progressing in september. Should I ask him about Remicade? My drug plan does not seem to cover it as it costs abit over $1,000 CAD per vial. The government of Alberta is putting a stop to coverage of biologic drugs, and forcing everyone to switch to Biosimilar (including my wife with diabetes taking the biologic Lantus) should I even bother asking about the biosimilar or the remicade? Have you tried the biosimilar?
@EffieSiamalekas
4 жыл бұрын
Hey! yes def ask about it! The Biosimilar would be a great option too. Its unfortunate that alberta and BC are making people switch.... it sucks, but the biosiimilar is VERY similar, so i would def ask about trying it! :) Good luck steve!
@doge1639
7 жыл бұрын
Remicade for me tomorrow idk how many I had mabye 5. every 8 weeks for me
@EffieSiamalekas
7 жыл бұрын
+Gabe The Dog how are you feeling after your first infusion??
@danielford323
3 жыл бұрын
Hey. I had UC but had op to remove in 2004. Been having some issues for 18months and was recommended that I go on infliximab, but I wanted to do my own research before starting. Your video was helpful. I do a lot of sport, do you know whether it effects being able to continue having an active life thanks
@EffieSiamalekas
2 жыл бұрын
So glad you're doing your own research! I has not affected me in any way. I have a more active life now because I'm able to manage my symptoms because of the medication :) The only thing is when traveling, you need to plan around infusions.
@jazz6408
6 жыл бұрын
The first time I took it, ut was great! 2nd and 3rd? Horrible. I couldnt breath and I vomited. I am allergic to it but I take humira
@EffieSiamalekas
6 жыл бұрын
Oh no!! Hopefully humira is working better! I can't imagine giving myself a needle every couple weeks! You go girl!
@jazz6408
5 жыл бұрын
Effie Siamalekas thanks you to. Hopefully you have a great day!
@gkiltz0
6 жыл бұрын
Veins are easier to find in the hand, but I have to get blood tests, and I HATE when they draw blood from the hand It is so much more pinful
@EffieSiamalekas
6 жыл бұрын
Agreed!
@sarahbear3171
5 жыл бұрын
Does it ever get better.. I just started and it sucks.
@EffieSiamalekas
5 жыл бұрын
definitely! gotta find what works for you
@shelbywolffie9977
4 жыл бұрын
I have UC and I’m still trying to figure out what Ulcerative Colitis is but for years iv been in so much pain so i really want to try this now and see if this might help me👍
@EffieSiamalekas
3 жыл бұрын
Best of luck!
@katrinamarie333
4 жыл бұрын
I have Crohn’s and tomorrow is my first time for remicade..
@EffieSiamalekas
4 жыл бұрын
How's it working for you now??? I assume you've gone for a few infusions by now
@katrinamarie333
4 жыл бұрын
Effie Siamalekas it’s thankfully working well, I feel a bit off for a day or 2 after.. but otherwise it’s a huge difference. I get anxious during it, but I get fluids now with it so that helps.
@Alex-go2wp
7 жыл бұрын
I was just diagnosed with UC about 2 months ago. Is remicade common? Is there any particular reason you chose this method/medication to others?
@EffieSiamalekas
7 жыл бұрын
Hey +Alex Ines ! Yeah, so in my video about all the common types of medications for IBD, you'll see that I spoke about step up therapy and top down therapy. When I was first admitted into the hospital I had a GI that was trying a bunch of 5-asa medications on me. These are for people with mild to moderate colitis. However, I was diagnosed with severe pancolitis, and had i known about all the meds and how they work, I would have questioned why she was starting me on step-up therapy. I believe she was trying to avoid biologics because I didn't have insurance and it is very expensive. Anyway, none of the 5-asas were working, and one day another go came by and we spoke to him about my condition, and immediately suggested remicaide. It is very common and has an extremely good success rate. I liked his "no bullshit" style... And he was very open about costs and solutions etc, so we immediately requested to transfer to him and got started on remicade that day. In the state I was in, I definitely should have been using the top down approach, I was about to lose my colon. This is one of the reasons I make these videos, its so important for patients to understand their options, and be able to question why a doctor is prescribing you something and completely understand the reasons for everything that's happening! Are you thinking of trying remicade???
@EffieSiamalekas
7 жыл бұрын
one day, another GI* came by
@pixie1310
6 жыл бұрын
What is "step-up therapy" and "top down approach"?
@JacK-yb7gu
7 жыл бұрын
You must be Greek. Me too ;)
@sarahrenee03
5 жыл бұрын
I just got told that humira isn't working for me so I will be starting remicade. My doctor doesn't seem to think it is going to work but knows my insurance will want me to try it. I hope it works because he wants to pair it with another drug that can cause infertility and my husband and I are wanting to start a family. Ugh.
@EffieSiamalekas
5 жыл бұрын
Remicaide is great, and definitely safe to take while pregnant. What is the drug they want to pair it with that can cause infertility?
@InHoshiWeTrust
6 жыл бұрын
I have UC and juvenile rhumitoid arthritis, my veins are very small the medicine helps me so much. I just hope I'm not on it for the rest if my life though (I'm 16)
@EffieSiamalekas
6 жыл бұрын
Make sure you are super hydrated when you go to get your treatments. The nurse also told me to have a coffee before the treatment, it helps bring your veins up!
@blazedupp7089
4 жыл бұрын
Do you have a strict diet while on remicade or are you just eating pretty much anything u want?
@mr.jiveman3213
4 жыл бұрын
The thing is, its going to make you feel like you can eat whatever you want. And you pretty much can. I would just reccomend trying to eat as healthy as possible and remember remicade doesn't fix your condition, it just helps you feel normal.
@blazedupp7089
4 жыл бұрын
Jive man okay yeah eating healthier is just overall the best option but if u don’t mind. What’s ur diet?
@EffieSiamalekas
4 жыл бұрын
I am pretty much 100% vegan. But the things that make me feel the worst are sugar and junk food. So even if you're not vegan, just being healthy and avoiding sugar is the best!
@blazedupp7089
4 жыл бұрын
Effie Siamalekas ok thx. Have u ever tried the vegan burger?
@EffieSiamalekas
4 жыл бұрын
@@blazedupp7089 ahaha YES I have tried LOTS of vegan burgers!
@hassnah3704
5 жыл бұрын
I have remicade tomorrow, wish me luck it's my first time 💪❤
@EffieSiamalekas
5 жыл бұрын
HOW WAS IT!? HOW DO YOU FEEL!?
@hassnah3704
5 жыл бұрын
@@EffieSiamalekas OWH VERY GOOD! I FEEL BETTER NOW 👌❤ HOW YOU DOING?
@EffieSiamalekas
5 жыл бұрын
@@hassnah3704 haha yay! Great to hear! I'm also doing great! I'm in my infusion right now actually! :D
@hassnah3704
5 жыл бұрын
@@EffieSiamalekas OH BEST OF LUCK💪💕(ITS FOR 3 HOURS I THINK) MY NEXT ONE IS IN 3 WEEKS!
@EffieSiamalekas
5 жыл бұрын
@@hassnah3704 yeah its pretty long at first, but it will speed up. After 2 years, i'm on the quick infusion and now it only takes about an hour and a half! :)
@turnland3707
7 жыл бұрын
Effie, Queen how are you? update your condition.. Remicade works with you? Greetings
@jacquelinesmith-jackson2815
6 жыл бұрын
I was on Remicade for my JRA and I was on it for 1 year. After 1 year I became allergic to the medicine.
@EffieSiamalekas
6 жыл бұрын
I hope you found something else that works for you!! All the best xoxo ❤️
@missalek139
4 жыл бұрын
I having UC and I do infusion almost a year now I hope it work, my symptoms still happen still have stomach upset I’m not sure that infusion help me or not😢😭
@aleta1986
4 жыл бұрын
Miss A Lek Channel let your gastroenterologist know if it’s not working. I was on Entyvio for a year and it made things better but then increasingly got worse. Never any blood in my stool but everything else made me feel I was going through flare up symptoms. After pushing to investigate more we found WBCs in my stool and proof Entyvio was no longer working. I start Remicade Tuesday. But if you don’t feel well trust yourself and advocate for yourself. Hope you feel better.
@missalek139
4 жыл бұрын
Thank you Aleta1986 I’m trying Remicade now and it doesn’t seem work well on me so GI doctor just want me to change the new one, I hope something work on me🤞🤞
@pixie1310
6 жыл бұрын
is Remicade the same as inflectra? I was DX with pancolitis in March. We tried every med. tomorrow I start steroids, I guess to prep for one of these kinds of meds?
@EffieSiamalekas
6 жыл бұрын
Yes! Inflectra is remicaide! Steroids are to reduce the inflammation if you're having a flare. It will heal your gut, and the biologic will keep your immune system from attacking your gut again :). Let me know which biologic they put you on!
@pixie1310
6 жыл бұрын
hey! So I took the steroid for 12 days and didn't poop AT ALL! also couldn't sleep so emotionally I was a wreak. I've actually been in the hospital for 4 days now. On Wednesday I had my worst flare ever. I had over 40 bloody diarrhea poops, I was so weak and dehydrated. So I went into the hospital, they admitted me, put in an IV, started me on the steroid again (after a day of fluids), and they are just waiting for the TB results back (I think 1 more day?) Then they are going to start me on Rem. BUT...I'm still having A LOT of blood. So they wanted that to stop before going on rem I think? I Don't know what to do. I hate this! I just wanna be better :( Apparently, I have a really severe pancolitis. I'm also really scared to take rem cause of all the side effects and you can get CANCER or DIE?!?! WHAT??!! How long have you been on rem and has you had ANY side effects?
@ellamarie233
5 жыл бұрын
What side effects are they anxious about before you start the treatment each time?
@EffieSiamalekas
5 жыл бұрын
im actually doing my infusions without any premeds now. they look for any fainting, fever, changes in vitals etc.
@hikmatyassine9966
5 жыл бұрын
How many infusions did it take for you to start feeling better
@EffieSiamalekas
5 жыл бұрын
3 or 4 i think!
@monstermind4286
3 жыл бұрын
Can you still workout good like 1 to 2 hour with ulcerative colitis?
@EffieSiamalekas
3 жыл бұрын
Yes, absolutely! Once you have it under control, you can work out the same way you used to!
@rachelyanez8830
3 жыл бұрын
I am 14 years old and i am starting to do Remicade i dont know how it will feel but im not going to lie am scared
@EffieSiamalekas
3 жыл бұрын
Hey Rachel! Why are you scared??? Feel free to message me here or on IG @effie_christina. I can try to answer any of your questions so you can have a good experience!
@sebastianc1594
7 жыл бұрын
I think I have to take remicade. No results with Prednisone
@EffieSiamalekas
7 жыл бұрын
i would defiantly recommend it! :D good luck Sebastian :)
@jellyo8241
7 жыл бұрын
Ahhhh I get my treatment through injections in my stomach,every 2 weeks.
@EffieSiamalekas
7 жыл бұрын
+Jellyo humera??
@jellyo8241
7 жыл бұрын
Effie Siamalekas it's a study, so idk what drug I'm getting 🙈
@ahmedtheartist8685
7 жыл бұрын
which ulcerative colitics you hav
@Projecttsukuyomi55
3 жыл бұрын
I’m 14 with uc and I’m starting Remicade. Does it hurt?
@EffieSiamalekas
3 жыл бұрын
Hey!! At first it can be a little bit overwhelming to have the IV in you, but the more you go the more you get used to it. When i first started going, I couldnt look at it, and I would almost faint, so I had to do it lying down (even just for a small blood test!) But now, I hardly feel it anymore and i love watching it go in! It is less scary when you understand how the needle works. Ask your nurse to explain it to you!
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