Remicade and absent mindness

I have been on remicade almost 3 years and my memory loss is getting a bit scary to say the least. I have a lot of the same issues already discussed not being able to say words that I always used in the past. don't remember what I'm doing some of the hardest things to deal with is how it's affecting my work. At 57 I don't feel like it time to retire and I can't financially but I can't remember things that happened a few weeks ago. Use to be I had a very good memory and I could pull up everything but now I forget completely con6versation from a week or two ago. No matter what I do I can't get those memories back but I can remember everything from years ago. I was really afraid to research this found out what I was afraid of. I'm going to talk to my doctor I hope everyone else can figure something out does anyone know if the memory ever comes back?

I am a week out and having a terrible time. Having a hard time working. Scary and unrelenting.

Does it get better if you stop the medication is my question??

They gave me remicade during my 4 months of chemo a year ago (diffuse large B cell non hodgkin lymphoma) and I'm still having side effects and my friend is on it too for chrones and she has the same symptoms as me

We're both 17 by the way so it's not just in "older patients"

I was on Remicade for 9 years to treat UC. The memory loss started after a few months and slowly progressed to the point of not trusting in my memory whatsoever....even remembering a verbal address after 15 seconds was unlikely. I switched over to Simponi in order to travel for longer times and my memory improved considerably in a very short time; but never close to where I was. After three years on Simponi, my memory is slipping away together with other cognitive declines. I feel great physically, but the mental parts of me are sliding away. I now need to consider surgery as an option to actually live a life worth living.

Hey. I was reading your post and saw that we’ve both been thru a lot of the same reactions.... Ive been on Remicade off and on since I was 18 (11 -12 years) and for a while now my memory is getting so bad. I’ve missed several get togethers with my family and/or friends, dr appointments, work, and yes even a date. Also, i can have a really in-depth conversation with someone and the next day I won’t remember what we were talking about. i have talked to my GI dr several times now about how I think my memory is getting worse and he pretty much just blows it off and says that it’s probably not the medication and I’m fine. It’s starting to get really frustrating. Have you talked to your dr about the medication and memory loss and if so, what did they say?
ive noticed To that my hair is getting more and more fine looking/feeling and a lot more hair is falling out monthly. I am kinda ocd when it comes to hair in my brush so I used to brush the hair out of my comb every month or so, now on this drug I’m brushing it out almost every other week- every 3 weeks. Did your dr say anything that you could do or use to make the hair not fall out and/or not so fine?

Last but not least, you said you had to stop Because of neurological side effects., If it doesn’t bother you to talk about it, could you kindly explain what was all Happening. Like were you hearing voices? Having bad suicidal thoughts? Acting more Bipolar? More anxiety? Etc etc etc.

I would greatly appreciate it if you could answer some of my questions Bc I’m trying to figure out what is wrong with me and if there even is anything wrong with me. Sometimes I think it’s all in my head but it’s just been really bothering me. If you would rather tell me thru email so everyone else on this forum doesn’t see it, let me know and I’ll give you my email address. Otherwise if you don’t care and want to answer, I would be so gratefully thankful.

Thank you-
Jessie Rae
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Hi! i just started reading some of these posts tonight because while i was with my family, i noticed that i would start asking the same questions over and over and once they started answering my question, i would start to remember what they told me the last time they answered my question. I’m starting to get more and more concerned and worried bc my dr doesn’t think anything is wrong so he won’t order any tests. I am just worried that the dr is wrong and there really is something bad happening in my brain and down the road something way worse happens to me bc of not taking care of it way sooner and it all could of been prevented if my dr would of just ran some tests.... maybe im a hypochondriac or something but i have had some horrible things happen before bc my dr wasn’t paying attention to me n wasn’t just running the tests just incase. I get drs don’t like ordering tests just for the hell of it but the thing is, i know my body more than my dr does and every time i told my dr that something is wrong and sometimes i would even say exactly what was wrong with me (example: horrible pain from a lump on lower butt cheek and i told my dr about it and that i thought it could be a peri-rectal abscess. The dr said he didn’t think so and just put me on antibiotics. For three weeks the lump was getting so sore and painful that i couldn’t sit down normally and I started to get a fever. My mom wanted to take me in to the er but I thought since i was getting my infusion the next day, maybe i could ask the nurse instead. So the next morning i called the clinic to check in and the nurse asked me the usual questions everyone has to answer before they get the infusion and the nurse told me to go straight to the er and I couldn’t get my infusion. Well thankfully i didn’t get my infusion and did go in bc i did have a peri-rectal abbess that came from a fissure and now it is dangerously infected and i have to have emergency surgery right now. After the surgery, i talked to the surgeon and he said if i would of had my infusion yesterday i could of died bc of the horrible infection. So after that and knowing that i was kinda right about having the abcrss and the dr saying I’m fine, ive always been second guessing some drs unfortunately. Ive learned that just talking to other people that are going thru the same things that I have, are really helping me.

Thanks for listening to me and hope to hear back

Jess

Have you talked to your dr about this?

Sorry to hear you are suffering the same things I went through. You are not losing your mind or suffering from delusions. I suffered from cognitive decline (memory loss and retention of information) that had a severe impact on my work and lifestyle. The migration to Simponi was seamless and effective for my memory! I started to feel "normal" again. I found that the decline started again, albeit, more slowly than before. I've found that Biotin tablets (2-3 per day) helps alot. They are OTC at any pharmacy.
The hair loss was pronounced but once again, the switch over to Simponi has put the brakes on this somewhat. I'm still losing hair but not nearly at the same rate. Theonly potential remedy I've found was black sesame powder! Mix a spoonful of this in water or milk and drink once a day. I say potential, because I only used it for a short term before making the switchover. These side effects are apparently not common, so expecting any help from the medical community is likely non existent. Try somebody in the Asian community who knows a few things about eastern remedies. You might get lucky! Best of luck to you....and check out Simponi, it is license to travel without all the baggage of Remicade.

I have a job that requires me to retain a lot of varied information. I noticed I was losing the ability to do that well. I was on remicade for s couple of years until it stopped working recently when I switched to Humira for ulcerative colitis. I'm 54 and hadn't heard memory loss was a dude effect of remicade but after reading all these testimonials I'm wondering now.

I am wondering if there is help. It is starting to scare me too. Did you find out anything?

Did your memory improve once you stopped?? My memory is terrible. I to have a job that requires me to remember a lot of information

I've been forgetting things myself and could not understand why I forget some of the basic things. Now after reading this thread it makes sense about the memory loss and may have to speak to the specialist to see if anything can help

Yes Ive noticed the same problem