Hi Clo, My heart is compensating and the output is normal which is great. As for the rest it’s unclear. My GI spoke to me at length about it today and honestly did a better job than the cardiologist...
So based on the follow-up tests the cardiologist thinks it was a type of infusion reaction. Told me I could try it again but couldn’t tell me whether or not it would happen again or make things...
Thanks 73monte, yeah I can’t wrap my head around having this issue at this age. I’ve only seen warnings in the list of side effects that Remicade can rarely cause damage to the heart or heart attack...
Hi all, has anyone experienced heart problems from remicade? I’ve been on Remicade for 8 years with little to no problems. I’m otherwise healthy, in my 30s, low cholesterol, low to normal blood...
Happy New Year!🎆...
Thank you so much Clo, It so good to hear from you! I’m going to start another thread because it appears there’s some sort of potential heart issue going on as well. What ever it is came out of no...
Thank you both. Bloodwork came back but I haven’t heard from my doctor yet. Remicade/Inflectra antibody level was high- 21 on a scale that only went to 22. Wondering whether taking the 6mp and...
Hi all, It’s been a while. Thankfully things have been mostly uneventful in the last few years for me health wise. I had a major issue though the other day. I was getting my remicade/Inflectra...
I think it’s 50/50 for me- half around the holidays and the other half in the summer. Most of them were during my college and grad school days so it was the compounding of the stress from school...
Thank you all! Yes, so far the glitch has definitely worked itself out!...
So just an update. All the biopsies confirmed I’m in remission! Yay! Dr wants scope done again in a year. I have realized the nausea is actually coming with my migraines which is new. Migraines for...
I hope she is doing well. I asked about her a few months ago as well. happy to hear she’s been spotted else where....
Thanks guys!!!!! Really so excited!!! It was actually even better than the last one!...
So went for my scope the other day and it was all good! No sign of active disease!! So thankful for that! Though I’m still nauseous when I eat and confused why I still don’t feel right :/...
“a long tailed cat in a room full of rockers” Such a good way to put it Clo! That’s often how I feel when I start to feel unwell- is it going to be another false alarm or am I going to be caught off...
Yes, that’s what I started to get a little worried about today too. I had a stricture form a few months after starting remicade and had similar symptoms though much worse then this. That was dilated...
Oh so weird! That was the forum reposting not me. Not great. Woke up with right sided pain and that over all abdominal discomfort I used to get. It got better but I’ve get gaggy all day which is not...
Clo, did they usually just run their course? I’m fortunate there’s no blood or fever. Unfortunately I can’t up the 6mp. I’m only take a half dose to prevent antibodies to the Inflectra, not enough to...
Thank you both! I’ve stayed pretty on top of everything over the years. Got routine blood work done a few months ago when it was due and everything was fine. My biannual colonoscopy is coming up in...
Hi all, it’s been a while! Hope you are doing well! This is a question I always struggle with and am looking for your experiences. How long do you wait to see how your symptoms are playing out before...
14 years so far >~<...
Has anyone heard from NCOT? I fear the worst. I haven’t been around in a while and came back to check in on all those I miss....
Hey y’all, figured I’d throw my 2 cents in here. I haven’t had kids yet, but if I still ever have the opportunity to I would like them. Despite how much this disease has impacted my life over the...
Hi Minnie! I’m so sorry I haven’t been around and missed this! How are you doing at this point? I have been extremely fortunate that my fistula hasn’t returned now 9years later (😮 how has it been...
Hey all, feeling pretty crumby and in pain again. Will comment on everyone soon as I can muster the energy....
Hi Clo and NCOT! So nice to hear from you both. Wish it was under better circumstances of course. Oh my goodness Clo you are 100% right with the “bad news cycle” :( I was on Remicade until my...
Hi All, It’s good to see some familiar faces! I haven’t been here in a while. How are you all holding up? After about 4 years of remission, unfortunately my last routine scope showed active disease...
I’m on Remicade. I got the Pfizer shot in March. No side effects other then a little achy arm for a day or so. I had my antibodies tested two months ago and had a great response to the vaccine. It is...
Thank you U B, and so so glad to hear you are still doing well in remission! Will go find myself some tea tree oil to start with....
Y’all I’m done with this year. I lost my mother/best friend recently and feeling the soul ripping pain of it. The only thing I have going for me right now is that my health is good. last few...
Got my first dose recently only two days after my infusion. Doesn’t seem to be an issue though some suggest if you have the option give it a little space so your immune system will be able to mount a...
Thanks, it rarely happens but last night was not good, no buldge tho. Will probably call about it though just incase....
Those of you who have had hernia repair, do you still experience occasional pain where it was? Every so often I lift something that seems to set off pain there. Yesterday I was working on moving some...
Thanks Clo! Blood work came back perfect! So thats good news! Waiting for the results of the stool tests. I just dropped them off today. Long story about how that ended up taking so long but in an...
I’m so sorry you are dealing with this on top of everything else! I’m not sure if I was posting too much around that time (fall 2019). I had had it for over a decade but the stricture in 2016 caused...
I had inguinal hernia repair a little over a year ago. Make sure you get a surgeon that has done lot of them and understands complex cases with your other health issues. Mine was fantastic. He...
Hi All, No worries at all with the conversation, continue! Family emergency earlier this week so things have been upside down. I just went to get the lab work done today. Still have the discomfort so...
Straydog: we will be meeting via video call. I’ll ask about the MRE though not sure if he will recommend it. The last one did not show up on MRE or CT, only during the colonoscopy. Thank you for your...
Clo!!! So good to hear from you! Have thought of you often and was wondering how you are doing!I hope they are able to get you in soon to get it fixed. I’m so sorry you are going through this during...
Hi Straydog, Thanks! I had a balloon dilation of the fibrotic stricture that opened it up to normal and had not reoccurred 2 years ago....
Hi all, do any of you know if you can develop a stricture with crohns in remission? Everything points to me being in remission but about 2 weeks ago I started having a dull ache in my lower right...
Ack! The uvula! I remember getting an infection in that a few years ago, it was so bizarre and terrible! Glad to hear you are feeling better! I hope you have a good response to the Remicade! Things...
Hi Bucko! How are you doing??...
Check out the diet UMass has been investigating- IBD AID diet. Seems promising at least for some and as a compliment to Medication. They have a step by step way of transition from low residue to a...
Happy Holidays to all of you! I haven’t been around much and luckily Crohn’s has been under control (although some nasty symptoms the last few days that I have to get checked out) . Wanted to stop by...
Thanks Lanie so so much for commenting.I feel very betrayed. I have been going there for about two years. I love the psychiatry residents that I see there, extremely helpful and great at what they do...
I need some perspective: Today my therapist compared me to my father with whom I have a bad relationship and who by most standards has been emotionally abusive to myself and my mother. On one hand...
Yes it’s prescribed. I had it years ago with the fistula i had...
You may have room to increase it. Talk to your doc. I didn’t find that it completely helped on its own....