Has anyone used iv remicade, I just had my fou... - Behçet's UK
Has anyone used iv remicade, I just had my fourth infusion for my behcets. I'm experiencing major mood swings, depression and joint pain
I am also on Infliximab Infusions and taking prednisolone. I also have the IV steroids with the Infusion at the same time. I noticed a lot of mood swings etc with the steroids I was taking and it seems to get worse when having it with the IV steroids but that side affect has reduced since reducing the daily tablets.
I also find my joint pain and fatigue increases for anything up to a week after the infusion. I find I really have to make sure that I completely rest that day. I have also noticed it does get easier as time goes on and they are spread out differently.
I am wondering if this is what you are getting if you are taking steroids tablets on top or with the infusion.
Hope this helps
Hi there,
My husband has been taking Remicade for Ulcerative COlitis. He is an extremely happy, outgoing, active and loving person. After the 4th infusion shockingly, he has become severely depressed, anxious and withdrawn. Not sure what to do. We are desperate, he has changed 90%. His interest in hobbies comes and goes. It is so scary. Did your symptoms subside? Was there a course of action you took? Please advise...thanks.
Hi. I was on IV Infliximab for a while, and like Andrea, had IV prednisilone at the same time as well as taking oral prednisilone. I got quite a lot of mood swings and low moods too, although I always found it hard to figure out if that was the medication, and if so which one, or whether it's just part of having a chronic illness and being in lots of pain. Hard to separate these things I think. I'm on a different med now (cyclophosphamide, a chemo drug) and still get the same mood changes.
When I was on infliximab I found it worked brilliantly for my joint pain, it would really reduce a day or two after having the infusion, to the point I could stop my pain killers for a while, but then it would gradually come back after several weeks.
Hope the mood swings and joint pain settle down for you - good luck.
Thank u moomin and andrea. Actually i am not taking prednisone, i jave great difficulty w it and will only do if in emergency. I am generally a pretty happy person so i think weve decided its definitely the remicade. Like u said hopefully as time goes on, i will feel less if these side effects. The depression is very unusual fir me and i find it quite scary. Thk u for ur replies and peace in ur behcets journey
Does that mean you are not having the IV steroids along with the Infliximab. It is generally given at the same time to ease any side affect reactions to the Infliximab. You may not be aware if they are giving to you...it might be worth checking when you have the next infusion.
My remicade infusion is done w tylenol and benedryl prior to infusion. maybe its different in the uk. Definitely dont get steroids w it
Moo min, it is interesting that our joints felt better after remicade, and min be r opposite., it hurts solo much like down to the bone, I can barely get up and down stairs particularly afternoon and evening., and if I get to my knees i have extreme difficulty getting up.,. Well im not giving up hope, u all hang in there. Thanks for our support. This is the first time in 30 years I've talked w anyone else w behcets. I value this forum so. much.
It is strange how we all seem to get different symptoms and different side effects from medications, it's frustrating I think because it makes it all so hard to predict. I agree though that it's great to have a forum to talk to other people with Behcet's - I've only joined recently, but have found it really interesting to hear other people's experiences. Good on you not giving up hope, I really do hope things get better with your joints.
Hi there,
My husband has been taking Remicade for Ulcerative COlitis. He is an extremely happy, outgoing, active and loving person. After the 4th infusion shockingly, he has become severely depressed, anxious and withdrawn. Not sure what to do. We are desperate, he has changed 90%. His interest in hobbies comes and goes. It is so scary. Did your symptoms subside? Was there a course of action you took? Please advise...thanks.
I have Remecade infusions every 6 weeks and like runninggirl08 I take the tylanol and benedryl just before the infusion. I'm totally fine with it. I also take methotrexate. my old infusion clinic gave me the infusion over 2 hours. I had to change clinics because we moved and they gave me it in like 25 mins. I felt terrible.
Yes I have been getting infusions Since February. Mine have been changed to every 4 weeks and an increased in the Remicade. I also get steroids as well. I have the mood swings as well. You may want to speak with your regular doctor about this. They may have a way to ease that for you. Hope this helps.
Hi there,
My husband has been taking Remicade for Ulcerative COlitis. He is an extremely happy, outgoing, active and loving person. After the 4th infusion shockingly, he has become severely depressed, anxious and withdrawn. Not sure what to do. We are desperate, he has changed 90%. His interest in hobbies comes and goes. It is so scary. Did your symptoms subside? Was there a course of action you took? Please advise...thanks.
I lasted thru 6th remicade infusions. Had horrible joint pain..fatigue...depression....worst drug I ever took. Have since overhauled my nutrition and thats made a major decrease in behcets symptoms. Off of all meds for 9 months. Meds were slowly killing me.
What nutritional changes have you made? Very interested
Hi there,
My husband has been taking Remicade for Ulcerative COlitis. He is an extremely happy, outgoing, active and loving person. After the 4th infusion shockingly, he has become severely depressed, anxious and withdrawn. Not sure what to do. We are desperate, he has changed 90%. His interest in hobbies comes and goes. It is so scary. Did your symptoms subside? Was there a course of action you took? Please advise...thanks.
I'm free if gluten..dairy..soy...corn..
Just had labwork done..they tested 212 substances....I have TILT chemical sensitivity. Explains why I always got worse w meds. Have major sensitivity to corn...sugar...food dyes...toulene (gas) and other substances. This was the best money ever spent. The test is called elisa/ act LRA test
