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05-29-2013, 09:56 PM   #31
GeorgefromMaine
 
Join Date: May 2013
Hello all, I'm so happy to have found this group. Reading your accounts makes me think I will get better.
After 8 months on Remicade (for UC) I began what eventually was diagnosed as DIL. Thank God for the Rheumatologist. My GI told me my list of symtoms couldn't be the Remi, my PCP told me he was stumped. Am I wrong to dump them both? Shouldn't someone that prescribes a medicine understand it's potential issues? Shouldn't a PCP that is stumped send you to someone who isn't stumped? Well, I dumped them both.
Considering the GI's support for the Remicade, is it possible that they earned compensation from the maker. I know it's a conspiracy type question, but his constant support was unbelievable (now that I know what was going on).
Anyway, I started Prednisone a few weeks ago. Joints and muscles feel great, but the chest pain hasn't let up a bit. In fact the Rheumy said to stop the Ibuprofen as it does the same thing as the Prednisone, but now that I have reduced the dosage I'm needing the Ibuprofen again.
There is a significant time between visit to the Rheumy so I don't know what he'll do next.
After reading some other accounts here it makes me realize that my 4 months with DIL so far may not be so bad.
Thanks to all and I'll pray for you.
05-12-2014, 10:52 PM   #32
anonymiss
 
Join Date: May 2014
New member here.
I have had ULC since 2001ish. Nothing helped until I started Remicade. I now have DILE and no doctor will discuss it. I have missed so much work now, I am out of FLMA and about to lose my job. Being over 50, that scared me to death.
With that said, my anxiety levels are of the chart due to work. Between the joint and muscle pain which induce insomnia. I had a sleep study done last year and I woke up 28 times an hour. My memory had been working well up till my last IV. Two days later, I was confused and had no clue to what I was doing at work. I go in and out of these stages and it has been very stressful.
I have looked around a little on side effects but I have not seen everything I have been going through. Just wondering if anyone else has been having memory issues too?

It's has been as bad as getting lost on the way home from work, not knowing where I was at. Took me a minute or two to get straight. Stuff like reading and make any sense or following instructions at work. Or cannot stay focused on a show or movie. Watch series and not remembering the actors or the plot.

I can say Remicade has been a blessing for the ULC. Nothing worked and had flares on top of flares. I still have issues with ULC, but it is mostly mild. Also have acid reflux and just became allergic to nuts. I think I am allergic to am lot of food now as I have issues after eating most meals.

My sad story is now over....thanks for hearing me out. Depression has or I should say has taken my life from me, but now coping due to some meds. Not happy, but not sad, just here.....if that makes any sense.


I felt the best I've felt maybe even in my entire life and then got mono over the summer (a known Lupus trigger). After over 6 months of doctors visits I was finally diagnosed with DILE from remicade as well, but am getting nervous it's not drug induced lupus because I've been off remicade for 2 months now and my lupus symptoms are only getting worse (I now have to take prednisone every day to keep the swelling in my joints, heart and lungs under control). I've also noticed problems with my memory, although not as significant as the problems you're reporting. I've noticed (especially when I'm having a Lupus flare up) that I have a lot of trouble remembering things . My bigger problem seems to be with my long-term memory, but I am also very forgetful and most days concentrating seems almost impossible. I don't know for sure, but I think it's related to DILE.
07-13-2014, 07:02 AM   #33
Fosterfamily2303
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Join Date: May 2012
Location: York, Pennsylvania

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Hi all,i am not trying to frighten anyone but is my story Crohns sufferer 2006. i have been on remi for over a year and a half,all went well until August 2011, started went to hospital to have infusion and they noticed that there was a problem with white blood cells.They stopped all infusions immediately and carried out a serious of test to determine whether i had Cancer or not from the infusions.
after sooooooo many test it turns out that i have drug induced lupus from taken the infusions, they say that hopefully it should go away whiten three to six months.i have to go to hospital every three months to have pain relief injected under my rib cage,it seems to be doing the trick.on steriods since august cant control flare up,Going to hospital for resection next week hope all goes well,
sorry if i have worried anyone but this is something to think about when your on high tech medication.

How long did u go with the aches? I have been getting my remicade since nov. Last year and was fine til my last infusion 2 days ago. I have pain all over. It hurts to move...I'm n pot sleeping well because like u..every time I move it wakes me up.
My blood work last month showed low red and white blood count...High MCH and low ABS lymph ct.
__________________
Life gives you guts and sometimes I get the sh**s of it!


Meds: Pentasa, Imuran, Remicade and Tramadol

Last edited by Fosterfamily2303; 07-13-2014 at 07:53 AM.
11-16-2014, 04:59 AM   #34
susancc
 
Join Date: Nov 2014
Location: Fairbanks, Alaska
I thought I was crazy until finding this forum. Thank you for sharing your stories. I developed DIL after three remicade infusions. Initially my PCP said I was having a fibromyalgia flare, until I ended up in the hospital with with congestive heart failure, pericarditis, pericardial and pleural effusions. Before being hospitalized, i had been experiencing severe joint pain, fatigue and memory problems, including becoming disoriented. Two months after leaving the hospital I was able to discontinue supplemental oxygen. Now five months later I still experience symptoms of lupus and chest pain. Am still not sure about my prognosis. At least my UC is in remission, but am not sure it was worth the cost.
02-21-2016, 12:38 AM   #35
Sophia.nycq@gmail.com
 
Join Date: Feb 2016
Location: Whitestone, New York
Hi Bunny,

I know this was posted quite some time ago but I had a very bad lupus like reaction to Remicade. I need a good rheumatologist. I live in Queens, NY. Could you pls tell me who your rheumatologist is?

Thanks 💜


Ed....hope you are feeling better.....Prednisone didnt help me at all but i think the Plaquenil may be kicking in. I have not had the incapacitating pain in 9 days. I am able to take some time off work and have been sleeping so much!!! I think that is helping. I also find the tramadol (Ultram) to help a lot for the pain. It is hard to describe the symptoms because they are UNLIKE ANYTHING that I ever experienced.

Have you had the bloodwork to confirm the DILE??? It is a simple blood test and you should demand it.

Just because it is rare..........doesn't mean it can't happen. But I experienced the same with my GI. He is the one who gives me the Remicade. They seem to have some sort of strange alliance with the remicade.

Feb. 3 seems like a long time away for you to be hurting. I ended up seeing my PCP for the tramadol to hold me and it really works. I can send you the name of the rheumatologist I found if you live anywhere near Long Island NY.
02-21-2016, 07:05 AM   #36
ronroush7
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Location: vienna, Virginia

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I agree that a doctor should know all the possible effects before prescribing something. I hope you get some answers and feel better soon.
03-25-2016, 02:15 PM   #37
Jasonwb
 
Join Date: Mar 2016
Location: Ontario
Hey there, first time long time!

After about 3 years on remicade, I started to get sore knees, then other joints, after about 3 months (still on remi) my elbow ballooned up, and my hands looked like Mickey mouse hands. Looked online and saw the drugged induced Lupus stories. Similar story, got sent to a Rhematologist, showed him my hands and disagreed with him, went back to my Gastro, said I wanted to give my body 6 months of a break from remicade, She agreed, and about 3 months later finally started to feel normal again. I was in huge pain, needed thick padded flipflops just to walk around my house, the bottoms of my feet hurt so bad. At the 6 month mark had a colonoscopy and the crohns was just starting to get active again, so now on Humira. So far so good, but if your getting joint pain, and they send you to a Rhematologist, in my opinion they are not helping you. Take control and figure out whats best for you, other wise they bounce you around from doc to doc, only masking the symptons.

Good luck out there!

Jason
03-25-2016, 03:24 PM   #38
Bufford
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Join Date: Dec 2015
Location: Northwestern Ontario

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I had to stop remicade after the 3rd infusion due to Lupus like symptoms. I developed the butterfly rash on my face after it started on my forehead the skin red and flaky with burning itching and sunlight makes it worse. It still has not settled down 3 months since the last infusion.
Abdominal pain radiating across my stomach from the ribs down to my pelvis made it impossible to get comfortable causing me to constantly reposition myself.
My memory has been far worse, and at times I cannot retain anything. Then there is the ongoing joint and muscle pains. Thank god for the pain killers, without them I would not be able to cope.
Now I am waiting for my appointment in April to see the GI doc and go from there. Quite frankly I am very nervous about trying any treatments. Despite the bleeding fistuala i am able to manage my pain and symptoms better without treatments and these chemicals highjacking my immune system.
10-12-2016, 09:09 PM   #39
Lstewart
 
Join Date: Mar 2016
Location: Colorado Springs, Colorado
I just saw this thread today because my GI doc is thinking of switching me from Humira to Remicade. This is really scaring me. I had no idea that the treatment for this disease could cause so many issues. I have enough issues flaring without drug induced lupus! I go to see her on Friday, and she was already mad at me for missing a couple of appointments when I was feeling fine and working a lot. I hope she will still talk to me and listen to me as well. Wish me luck. I am 43 years old. I was diagnosed 6 years ago and before this I was never sick a day in my life, so all this doctors and medication and stuff is strange to me.
10-12-2016, 09:30 PM   #40
ronroush7
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Location: vienna, Virginia

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I just saw this thread today because my GI doc is thinking of switching me from Humira to Remicade. This is really scaring me. I had no idea that the treatment for this disease could cause so many issues. I have enough issues flaring without drug induced lupus! I go to see her on Friday, and she was already mad at me for missing a couple of appointments when I was feeling fine and working a lot. I hope she will still talk to me and listen to me as well. Wish me luck. I am 43 years old. I was diagnosed 6 years ago and before this I was never sick a day in my life, so all this doctors and medication and stuff is strange to me.
Sending you support and prayers.

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