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10-23-2011, 01:52 PM   #1
abo
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remicade and lupus

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.
10-23-2011, 03:40 PM   #2
KayleighMeek
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I'm sorry you've had to experience this it must have been frightening. I also had a bad reaction on remicade but still the best medication I have been on.
I hope your surgery goes well and you start to feel better soon x
10-23-2011, 03:45 PM   #3
Lydia
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Remicade worked awesome for me until I had a lupus like reaction to it about a year after starting it. My muscles and bones ached so badly. I woke up every morning feeling like I had fallen down the stairs. I could not sleep well at night because I felt pain every time I moved in my sleep. It was terrible. I stopped the remicade and my muscle and joint pain went away a few weeks after my next infusion was due. It saved me from surgery so I cant complain.
11-01-2011, 10:46 AM   #4
kromom1
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I also had a drug-induced lupus reaction to Remicade. After just 3 infusions of Remi, I started feeling like I had the flu, then was having terrible chest pain so I went to the hospital where it was found that I had fluid in my lungs and heart. I almost died. After "pericardial window" surgery and thoracentesis to remove the fluid and 2 weeks in the ICU, I was released with a diagnosis of systemic lupus erythematosus. After 2 years of taking Plaquenil for lupus, my ANA was back to normal, and so the doctor decided it was a drug-induced lupus from the Remi that had cleared. So no more Remi for me.
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Lisa

Diagnoses: Crohn's 8/07; steroid-induced diabetes 11/07; Remicade-induced Lupus 02/09, shingles 7/10, and hypothyroidism.
Medications: Entyvio, Methotrexate, prednisone, Protonix, Synthroid, fish oil, calcium, multivitamin, glimepiride. Failed Pentasa, Entocort, Humira, Imuran, 6-MP, Remicade, Tysabri, and LDN.

Last edited by kromom1; 11-01-2011 at 10:48 AM. Reason: made error
01-14-2012, 02:56 PM   #5
bunny520
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After 4 Remicade treatments, the joint pain was unbearable. My GI pretty much ignored my concerns and convinced me it couldn't possibly be the Remicade. I felt like he didn't even believe me. I continued to research and had myself checked by a rheumatologist. DRUG INDUCED LUPUS.....I am now unable to work, many days I can't dress myself, hold a cup or get up and down without help. The GI's dont want to acknowledge this possibility but it is real and it is painful. It will take up to 6 maybe even 10 months for recovery. Remicade is wonderful for some people but very dangerous for others. DO NOT IGNORE THE JOINT PAIN................
01-16-2012, 04:51 PM   #6
moogie
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I'm in love with remicade and I can't imagine not having it. Just thinking of what will happen when I finally reject it scares me a lot.

I always thought I was without any side effect. However after reading the baord here I have had a few episodes where I am sore all over for a day or two. So much that I can hardly sleep at bnight. Moving hurts enough that I wake up. I always thought it was just normal muscles being tired. Maybe it's different. It's not enought for me to stop using it but I thought I should share it.
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Getting 5mg now. full dose. cost 5500$ )
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3 resections
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On Remicade Since April 2011 I am alive again!
01-16-2012, 05:11 PM   #7
bunny520
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I too was in love with Remicade..........but the joint and muscle pain increased after starting slowly......... just keep an eye on it and if it gets worse do not let it go............. I wish you the best.
01-17-2012, 11:02 PM   #8
EdM68
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All the best to those of you who've had these lupus-like symptoms. I'm currently in a lot of pain. Was supposed to have an infusion today, but I cancelled. I won't be putting any more Remicade in my body. I work nights, and I could barely get from my car to my front door when I got home this morning. Trying to sleep today was even painful. I hurt every time I tried to change positions to get more comfortable. Called out of work sick tonight. There's no way I could have worked a 12 hour shift the way I feel. As it is, I can barely get from the couch to the kitchen, so I haven't eaten anything today because it's too long a walk.
01-18-2012, 07:55 AM   #9
bunny520
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Have you seen a rheumatologist? Please do.....she is helping me a lot. I am taking a medication called Plaquenil for the lupus syndrome. It seems like maybe it is working a little after 2 weeks. I also use tramadol at regular intervals so the pain doesnt "back up." I too became incapacitated. I am lucky to have a lot of sick time in my bank. I am a teacher and literally couldnt do my job. So I just started a 2 week leave. the rheumatologist thought it was a good idea if I had the time. I KNOW how you feel and how painful even sleep is !!!!!!!!!!!!!!!!! She gave me some percoset and told me to TAKE IT AT NIGHT SO THAT YOU SLEEP BECAUSE SLEEP IS HOW YOUR BODY WILL HEAL. I know we all are in fear of opiate meds but when taken responsibly they provide great relief.
MY gastroenterologist still does not want to believe it was the Remicade and wanted to double dose me every month. I think I would have been dead. I found a new specialist who works as my "team leader."
Sorry to ramble but I think this is happenning to a lot of us and the GI's are not being responsive to these symptoms and their cause. My chrohn's is still in remission but I am only 9 weeks out of Remicade. The lupus, she said will take 3 to 6 months to resolve. Good luck, see a rheumatologist and dont let your GI "bully" you. YOU know your own body. I so much loved the results of the remicade for my crohn's. It gave me my life back but then took it away. I am happy for those who can use it without side effects.
01-21-2012, 04:03 PM   #10
EdM68
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BUnny - I've been to a rheumy, and it's not gone well. Back in December, he ran some blood work, and he chastised me for not making my gastro do a colonoscopy since Jan. 2008. He thinks we need to know the level of activity of my Crohns. But this doesn't seem to be related, as my Crohns symptoms have been under very good control, save for occasional blood when I go to the bathroom (but it is bright red, meaning it's close to the "end of the line" so to speak, and not further up where we can't see).

A couple days ago, after having had to call out of work due to the pain, I called his office and asked him to call in a new script for Prednisone, as he gave me that in December and it eased the pain within 12 hours of starting it. This time, he started arguing with me. He was mad bc I am going off Remicade, and that I'm blaming the Remi for the pain. I reminded him that he told me DILE can't be caused by Remi, but my research, including looking at Centacor's website, has found that it most certainly can. Then he changed his tune and said "Well, it's exceedingly rare, and you'd be the first case I heard of in my 12 years of prescribing it." Then he started in on the colonoscopy issue and blaming my gastro again. I told him "look, even if I call him today, he's not going to suddenly schedule me for one tomorrow." He was just very nasty, but he did renew the prednisone, and it's helping. I'm waiting for some followup lab work to come in to his office. When it does, I will go pick it up and find another rheumy.


BTW - I have an appt w/ my gastro on Feb 3, and if he doesn't schedule a colonoscopy at that visit, I'll be shopping for another gastro as well.
01-22-2012, 08:06 AM   #11
bunny520
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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.
01-30-2012, 03:16 PM   #12
btb601
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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 a 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.
01-31-2012, 12:32 PM   #13
moogie
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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 a 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.

Welcome to the group.

Some of us have pass rought imes too so we understand a bit of what you are going through. We are here to help so please feel free to write and tell us what is happening, we are all friends here.
02-01-2012, 11:02 AM   #14
btb601
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Thanks for the welcome Moogie.
A quick medical history. Neck surgery in 2004, both shoulders surgeries less in a years time. Arthritis in my wrist, knees and back and neck. If I use my hands more than a few minutes, I lose movement and have a hard time using them. They lock up and is hard to move. Also had a heat stroke in my youth.
I started running in 2010, May thru Oct.. I lost 60 pounds, but gained most of it back during the shoulder surgeries. During the running period, I could not get hydrated. Ended up in the hospital emergency room with chest pain. Turns out my potassium drop low and which caused the chest pain. Ever since, I am alway dehydrated. I had to stop running due to lower back pain and my left leg would have a hard time supporting my weight.
Now I have high anxiety due to the brain dead syndrome. I don't like making a fool of myself in front of others and I see that I do on a regular basis. During these phases, I cannot type, spell, balance the check book, etc. The doctors just say I am getting older and it is natural. I have tested positive for Lupus for years now. Pretty much after getting Remicade. At first it was just a lot of forgetfulness and really bad joint and muscle pain. As for now, it's the memory and dehydration is taking the toll. The anxiety is so great, I am about to lose my job due to calling in or not being able to do my job.

I am wondering anyone on Remcide going thru this too? Thanks.
02-01-2012, 06:24 PM   #15
EdM68
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Bunny - thanks for the offer, but I'm not too close to your location.

Quick update - the joint/muscle issues are kicking my butt presently, and last week I was taken by ambulance to the hospital from work due to chest pain that wouldn't go away. I was afraid it was a heart attack. The last few days, I've been getting chills during the afternoon, and sweats that are bad enough to soak the sheets at night. Also, the painful nodules on my elbows are getting bigger.

The second blood work came back, and the ANA is still abnormally high, and the anti-histone was high and says "moderately positive." I'm not a doctor (just an RN), but I think this may be more suggestive of DILE than actual SLE or some other autoimmune disorder.

Seing my Gastro on Friday. Thinking I will ask him for a low dose of predisone for a while (as that worked very well), and hopefully we can decide on a new trmt for the Crohns Colitis.

If it is DILE, it should resolve eventually since I've discontinued Remicade. If it was unrelated, then a new trmt that controls the Crohns should relieve the aches and pain, no?
02-02-2012, 04:29 PM   #16
bunny520
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Hey guys ..... I am now 12 weeks off of remicade and for the first time in months I believe I am coming out of it......I went through the chest pains too Ed and the chills, sweats etc. The worst for me is the joint pain..... This week I feel much less pain and have been able to work through the whole week. Two weeks ago I thought I was going to die....... Prednisone didnt help me but I did get a script for Ambien which has enabled me to get a comfortable night's sleep. I really think the sleep is helping me heal. So.......................... to btb601...... if your DILE is from the Remicade...hopefully your symptoms will diminish now that you are off of it. Hang in there people, I think there is an end in sight !!!!!
03-22-2012, 04:44 PM   #17
mussen
 
Join Date: Mar 2010
Location: N.Z
Hi just found this post......
I got drug induced lupus from remicade as well. The symptoms came on over a couple days and quickly got worse. I mostly had etreme joint pain, seemed to be any number of different joints any day..... every joint was affected (incl. jaw)at some time except my shoulders??
(had been on Remicade on and off for approx 7years)
My GI was awesome, on to it straight away she was stressing a bit about the white blood cells and the cancer implications.
Was told I could never have Remicade or any family of that drug again.
My symptoms dissapeared by themselves and am fine now.

M
03-29-2012, 08:12 AM   #18
SdN
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I decided to read this thread as I was concerned I might be developing lupus from remicade as well but after reading your descriptions I realize it must be just a rash on my face. I don't have any of the other pains you all mention just a rash with a distinct outline on my right cheek.

Thanks for all the insight everyone it really helps when I freak out that I may have another strange side-effect from this disease!
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Diagnosed with Crohn's September 2009

50mg Imuran - Jun 2010
increased to 150mg Imuran - Jan 2011
5mg/kg Remicade every 8 weeks - Mar 2011
stopped Imuran - Aug 2011
7.5mg/kg Remicade every 8 weeks - Nov 2011
Remicade is still working - Nov 2014
Colonoscopy shows no Crohn's! - Dec 2014

Current meds - 7.5mg/kg Remicade
06-26-2012, 07:55 PM   #19
violetenvy
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Hi! I have been getting Remicade infusions for about a year now and in the last couple weeks have been getting pain in my wrist and tightness in my fingers and toes. And I have had some pretty severe at times muscle weakness for even longer.

I was searching around for information on Rheumatoid arthritis/drug induced lupus to see if my symptoms matched up and came across this thread.

A few people mentioned that they had issues with their white blood cell count. Was it high or low?? My GI nurse called Friday and said mine was high and to let her know if I started to run a fever. No fever... but with all the other symptoms I'm going to be calling her first thing in the morning. Right now the pain isn't bad, but I want to rule any of this out before it gets worse!
06-26-2012, 08:44 PM   #20
SdN
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I don't know for certain but I'm going to guess the white blood cell count was high. Try not to get too concerned though! There have been so many times where I've been concerned about something serious and it turned out to be something relatively minor. Both the disease and Remicade can really keep you on your toes.
06-26-2012, 09:13 PM   #21
violetenvy
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Thanks for the reply!! I'm trying not to worry about it too much, but I'm already having some problems sleeping from prednisone and I'm afraid this may keep me up tonight. Thankfully I went to the library yesterday and have a nice stack of books to occupy myself with!
06-26-2012, 09:31 PM   #22
SdN
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Good to hear Yea prednisone and sleeping do not go well together.
06-26-2012, 10:20 PM   #23
PsychoJane
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When really worried, try and ask for a antihistone, ANA, anti-dsDNA blood check.
They are some titers that generally helps a lot in making the diagnosis of Drug induce lupus - TNF-alpha antagonist-induced lupus-like syndrome (TAILS)

I know some GIs don't take our symptoms seriously and some of them just seem to want to consider that all we feel are extra-intestinal manifestations from our Crohn. If you never had EIM before and you have them after using a treatment, hold your position and ask them for further testing. Even though these side effects are still relatively rare, they are well documented and most of all, they do exist. It is your health and not theirs and if they don't want to listen, seek for another ear. Your GP can technically request these tests too and then, if something is wrong, it's gonna be one step done to be able to show that these pains are not only happening because life wants them to happen...
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~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
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06-28-2012, 04:10 PM   #24
CharleeBee
 
Join Date: Jun 2012
Location: Dallas, Texas
Hi! I just found this forum today and I can't believe how many stories are similar to mine! I found this site by googling Remicade and joint pain. I had a flare up of psoriasis after my baby was born last September, so my Dermatologist put me on Remicade. I've had about 7 infusions and when it was time for my 8th....I started getting the most SEVERE JOINT PAINthroughout my entire body. It was so bad I couldn't even pick up my 9 month old. I went to the derm. with my symptoms and they told me I just needed another infusion. NO THANK YOU! I didn't have joint pain before the Remicade so I knew it was Remicade related. I then went on to see an Internal Medicine Dr. who ran a number of tests. She put me on Tramadol and Naproxen to help with the pain and inflammation. Neither one of those put a dent in my pain. Was then put on hydrocodone which still did not give me much relief especially when the chest pain started kicking in on my left side. I felt like I was having a heart attack! My ANA tests came back...DI Lupus! Went to my first Rheumy the other day...now I've found some relief with prednisone and pain meds. I'm just wondering how long this will take to get rid of the DI lupus?? I've heard anywhere from 6 months to a year??? Does anyone else have elevated D-Dimer? and elevated liver enzymes? depleted vitamin D? Now getting a sonogram of my liver tomorrow and a CT scan of my chest on Tuesday. Just ready for this to be over! I wish they would pull Remicade, it is hurting so many people!!!
01-01-2013, 11:20 AM   #25
christinas
 
Join Date: Jan 2013
Location: St. Louis, Missouri
Hi all. I am a Psoriasis sufferer. I took Humira for 2 yrs and then had to stop after having a flare after getting 2 cortisone injections in my shoulder for pain (At the time I didn't even think about the Humira causing the pain I thought it was from a car accident a year prior) I have been on Remicade for 2 1/2 years and have been getting worsening joint pain. Mostly in my shoulders,arms,wrists, hands, and knees. It seems to start after about 5 weeks after my infusions and then goes away immediately after getting another infusion. I saw a Rheumatologist who ran a full panel of bloodwork, but said she didn't find anything except a vitamin D deficiency. She told me to take naproxen. I am in so much pain I feel like I am elderly. I don't know what to do. This is making feel like I am cray cray! There are not many forums for people in my situation with psoriasis mostly just patients with Crohn's disease so that is why I am on here. I really hope I am not getting a drug induced lupus. Any advice??
01-01-2013, 11:23 AM   #26
christinas
 
Join Date: Jan 2013
Location: St. Louis, Missouri
Hi! I just found this forum today and I can't believe how many stories are similar to mine! I found this site by googling Remicade and joint pain. I had a flare up of psoriasis after my baby was born last September, so my Dermatologist put me on Remicade. I've had about 7 infusions and when it was time for my 8th....I started getting the most SEVERE JOINT PAINthroughout my entire body. It was so bad I couldn't even pick up my 9 month old. I went to the derm. with my symptoms and they told me I just needed another infusion. NO THANK YOU! I didn't have joint pain before the Remicade so I knew it was Remicade related. I then went on to see an Internal Medicine Dr. who ran a number of tests. She put me on Tramadol and Naproxen to help with the pain and inflammation. Neither one of those put a dent in my pain. Was then put on hydrocodone which still did not give me much relief especially when the chest pain started kicking in on my left side. I felt like I was having a heart attack! My ANA tests came back...DI Lupus! Went to my first Rheumy the other day...now I've found some relief with prednisone and pain meds. I'm just wondering how long this will take to get rid of the DI lupus?? I've heard anywhere from 6 months to a year??? Does anyone else have elevated D-Dimer? and elevated liver enzymes? depleted vitamin D? Now getting a sonogram of my liver tomorrow and a CT scan of my chest on Tuesday. Just ready for this to be over! I wish they would pull Remicade, it is hurting so many people!!!
Charlee How are you doing now? Have you stayed off the Remicade and have your symptoms subsided at all?
01-01-2013, 07:04 PM   #27
flowergirl
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I apparently have a very low positive negative double stranded something for lupus, but the dr was checking for something else and all my Ana's have always been negative. I read somewhere that up to 30% of people on remicade will test a a slight positive for lupus but never contract it.
I occasionally have joint and muscle pain, but I had that before I ever started the remicade and it was way worse before. I keep trying to get someone to test me for Addison's, as I have a lot of textbook symptoms, but as it's so rare and the dr's here are all idiots, no one will.
01-02-2013, 10:26 AM   #28
CharleeBee
 
Join Date: Jun 2012
Location: Dallas, Texas
Hi Christina!

I just wrote you back on askapatient.com. Your symptoms will eventually go away! Hang in there!

One thing I didn't tell you, if it is the DIL you may experience chest pain like I did. No one told me that chest pain was a part of it so it was a little scary...
01-05-2013, 02:33 AM   #29
amyh
 
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I was tested for DIL because I started having joint pain, and they said one level was slightly elevated, but nothing serious. The joint pain eventually went away for me. But I have other symptoms like skin issues, headaches and some slight hair loss
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01-09-2013, 01:00 PM   #30
melhau
 
Join Date: Aug 2012
My 34 year old son was on remicade for 14 years before developing DIL--and after 7 months, is still feeling terrible. One added symptom he has is profuse sweating--just above the neck! Anyway--question--has anyone switched to another crohn's medicine? One rheumatologist suggested he try Cimzia--said it could be started once the lupus symptoms disappeared -- anyone else try this?
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