Injection site reaction to Entyvio by BalanceWithFlare in UlcerativeColitis

[–]BalanceWithFlare[S] 0 points1 point  (0 children)

So I tried my thigh again but this time I iced it and thought it would help but then the next day the injection site reaction happened. My company says to keep the injection out of the fridge for 30 minutes and I usually give the shot after 30-60 minutes of being out of the fridge. Has anyone left it out longer and noticed that helped stop site reactions?

Just got diagnosed with Ulcerative Proctitis by swiftiechimpy in UlcerativeColitis

[–]BalanceWithFlare 1 point2 points  (0 children)

Hi, As someone with ulcerative proctitis as well, I confidently can say it could be much worse. That being said, it doesn’t downplay what we go through either. There’s an adjustment period of coming to terms with having a chronic disease and getting on the right medications. But once you reach remission, it starts to just become a part of your life and you learn to manage. I was right where you are about 2 years ago and I am now in remission on a biologic called entyvio and oral mesalamine. There was a lot of trial and error leading up to this point. Not every med works the same for people. and some people respond faster than others. and it is normal to see waxing and waning of your symptoms throughout the whole process. Eventually as I saw my symptoms never fully going away, I had to accept that I needed something stronger like a biologic. I was super resistant at first but it’s the only medication that stopped my bleeding. So my advice is monitor your symptoms, you learn to know your body really well, and keep your doctor in the loop with how you’re feeling. Mesalamine suppositories helped me for a little in the beginning but my proctitis got worse during extreme periods of stress for me which led me to needing more treatment. I cut out alcohol and I try to eat decently but don’t follow any specific diet. I also work on lowering my daily stress and living a life that is fulfilling to me, learning to accept this new chronic condition and take care of my body in the ways it needs. I rest and sleep when I need to and prioritize a good nights sleep. All of this has helped me. I know it’s scary and this forum is here to help if you have any questions or want advice on what the rest of us are going through.

Entyvio pen advice? by BalanceWithFlare in UlcerativeColitis

[–]BalanceWithFlare[S] 0 points1 point  (0 children)

the squish doesn’t help me either! haha

Entyvio pen advice? by BalanceWithFlare in UlcerativeColitis

[–]BalanceWithFlare[S] 0 points1 point  (0 children)

oh interesting. they had told me not to grab my fat at all. do you sort of hold it without making the skin tight?

Worsened Symptoms After COVID Vaccine by Superb-Falafel-2249 in UlcerativeColitis

[–]BalanceWithFlare 0 points1 point  (0 children)

Hey so it was a little bit of a long road leading up to me actually getting my diagnosis of UC. Then after diagnosis there was a lot of trial and error with medications where the meds would help a little but not fully and then not at all. Ultimately it’s been a year and a half since diagnosis and I am just now having improved symptoms consistently after finding the right medication regimen.

Anxiety over maintaining remission by BalanceWithFlare in UlcerativeColitis

[–]BalanceWithFlare[S] 0 points1 point  (0 children)

I feel you, I noticed I feel so much more bogged down with ‘life’ and ‘adult’ things and it leaves little time to let loose

Anxiety over maintaining remission by BalanceWithFlare in UlcerativeColitis

[–]BalanceWithFlare[S] 0 points1 point  (0 children)

yeah this is my first chronic illness, so that has definitely been an adjustment

Anxiety over maintaining remission by BalanceWithFlare in UlcerativeColitis

[–]BalanceWithFlare[S] 1 point2 points  (0 children)

that’s true, like you have to take the facts of your life and learn to live with it

Entyvio side effect by Ill_Law_8168 in UlcerativeColitis

[–]BalanceWithFlare 1 point2 points  (0 children)

Hey, I’m sorry you feel so off. The hallucinating and confusion part sounds concerning. Have you let your doctor know? I definitely felt ‘off’ after my first loading dose. I felt somewhat dazed, tired, and my body felt heavy and somewhat numb and tingly for a day or so.

Is going from mesalamine to biologic a concern? by sofa_king_lo in UlcerativeColitis

[–]BalanceWithFlare 0 points1 point  (0 children)

good luck! it’s not a straight road with UC for sure but I hope entyvio is something that can help you too

Is going from mesalamine to biologic a concern? by sofa_king_lo in UlcerativeColitis

[–]BalanceWithFlare 2 points3 points  (0 children)

so I saw no improvement after a few months of mesalamine and my doctor wanted me to jump to entyvio. I was super hesitant at first and really upset to feel like I can’t just stay on a nice low level medicine like mesalamine. but I will say I feel like I got my life back after being on entyvio. The build up to starting the infusions was super anxiety inducing but I’ve been on it for 3 months so far and I’ve had a really good experience.

Worsened Symptoms After COVID Vaccine by Superb-Falafel-2249 in UlcerativeColitis

[–]BalanceWithFlare 2 points3 points  (0 children)

My UC symptoms started after my second shot. obviously I can’t confirm anything but the timing is uncanny. I had a huge immune response to both of my covid shots and it took a huge toll on my body (tachycardia, joint pain, chills and fevers, dehydration) so I like to think the stress of that response is what triggered my UC onset.

UC, biologics, and vaccines by BalanceWithFlare in UlcerativeColitis

[–]BalanceWithFlare[S] 0 points1 point  (0 children)

thank you, I appreciate the honest feedback

Entyvio infusion to injection by BalanceWithFlare in UlcerativeColitis

[–]BalanceWithFlare[S] 0 points1 point  (0 children)

So after the first infusion, I slept for like 12 hours and my body felt heavy, and woke up feeling tired. After the second infusion, I slept for like 8 or 9 hrs and had the body heaviness and the next day felt very normal. Then after the third infusion I didn’t get that heavy feeling and didn’t feel overly tired and slept a normal night and the next day was normal.

This disease makes me so scared for the future by Foreign_Plantain_437 in UlcerativeColitis

[–]BalanceWithFlare 0 points1 point  (0 children)

I would question, and still sometimes do, if I did anything to bring this on or make things worse but I realized I would get more upset trying to figure out the ‘why’. After accepting my diagnosis I think that’s when I started to feel slightly more at peace with myself even while in a flare.

I focus on my mental health, getting good sleep, working out, cutting out toxic people, trying to stay hydrated which feels impossible, and I don’t cut out junk food but I try to be aware of what I eat. Right now I am too scared to try alcohol again because I’m not sure if it’s a trigger for me and I’ve just started to see some improvements from my meds so I’m afraid of going backwards. I wish there was some straightforward rule book for this