Crohn's arthritis or Remicade pain??

I have put up some posts recently and haven't had many responses.  I hope I can get some for this one as I really need some advice and help.

When I first started Remicade about a year and a half ago, I had no negative side effects from it and felt great afterwards.  Now, since October 2010, I have been getting joint pains afterwards.  At first I didn't make the connection and thought I was getting arthritis.  I went to a rhumatologist and he did a sonorgram on my knees (where the pain was) and he saw no problems.  After my December dose I realized the pain was from Remicade.  Now I am starting to wonder if this is true.  After my Feb dose, I got muscle pain all over, including my chest which was a little scary.  They pain goes away usually after a week but here it is 4 weeks later and I am still having joint pains in my legs, arms and neck.

Has anyone experienced this before and can offer advise.  I don't know if this is induced arthritis or some residual effect from Remicade.  If it is Crohn's arthritis, would this show on any test?  If so, what test have to be done?  I am in so much pain right now that I am going out of my mind.  Arthritis Tylenol on works some of the time and I don't see my dr. for another 2 weeks.  Sad thing is I just had a colonoscopy and he said my CD is looking a lot better which means the Remicade is working.

Please...someone help me.  I wil listen to all options at this point.

This seems to be the million dollar question. Crohn's arthritis seems to me difficult to treat.

For me..The orthopedic and rheumy ruled out everything from lupus, to bone necrosis , to RA... nothing showed up on blood tests or xrays but the orthopedic said he felt inflammation in several of my joints. The conclusion was crohn's arthritis.

I had joint pain before the remicade but since the remi it has progressively gotten worse, and yes with muscle pain even in my chest. I have been through the pain meds but the only thing that works for me makes my crohn's worse. The GI said its my only option right now.. the celebrex. I go back to him on Friday to discuss the situation.

I wish you the best of luck.. I am so sorry you are in so much pain.

Javajay I am not on remicade but do use pain meds. I take 1/2 tab of Percoset 3 x's a day, and I have no drowsiness from it. Maybe if you are needing something for the pain, you should try 1/2 dose and see if that helps without making you too drowsy. Hugs!

Thing is I am nervous asking for pain meds.  I am the type that deals with the pain and only takes something when it is untolarable.  To go to Vicodin or Percoset scares me a little, but I guess I have to do what I have to do.  I can't wait to talk to my doctor.  He is really good so maybe he will listen and actually help me. I know many people have problems getting pain meds from their GI but mine has always seemed to card.  Hopefully he will give me something.

Thank you everyone for your help and concerns.

I was actually thinking about accupuncture..but it expensive and not covered by my insurance.  I have had massages in the past and didn't like them that much. I had more pain afterwards.

I had a similar reaction to Remicade and it was some kind of serum sickness that had to do with the mouse proteins. I started having joint pains after a few treatments that were initially minimal. Just one shoulder was always sore, then after a few more treatments it was the other shoulder that was sore. It got worse and worse until after one infusion I woke up (I think it was the next day, but this was a few years ago) and couldn't move at all. All of my joints were affected. I felt like I was made of stone. I could not do anything! It was frustrating and scary, to say the least. My dr. was completely inaccessible (common theme in my life), so the only thing I could think of to do was to take some left over prednisone. I took about 60 mg and my symptoms gradually got better starting a few hours later. When I finally could get a hold of my dr. my symptoms were under control, but I believe she told me I had built up antibodies to the mouse proteins. Initially Tylenol Arthritis worked for me, but it got so bad that the Tylenol wouldn't touch the pain. My CD was under control when I got off Remicade, and I never really had a bad flare again, and currently only take Pentasa. Definitely talk to your dr. If you feel like you need to remain on a biologic there is always Humira and I believe the other one is called Cimzia, neither of them have mouse proteins in them. Good luck and keep us posted!

I feel your pain, literally. Right now I'm contemplating the ER because I'm in a massive joint flare. I started getting joint flare's about 3 months after I started Cimzia, I know the date because it was the very first day of 2009, January 1, 2009. My base knuckles on my left hand started swelling randomly...it hurt pretty bad and I had no idea what it was. At first it seemed to go away with my Cimzia injections and then come back right before my next injection. My GI decided to split up my Cimzia injections and instead of two injections once a month, they'd move it to one injection every two weeks. This worked for a few months and gradually the arthritis crept back in to the point where it just wouldn't go away and was completely unaffected by the Cimzia injections. Keep in mind my colonoscopy showed NO ACTIVE CROHN'S! They thought I had MS for a while, then fibromyalgia, then they thought I had Lupus (for which I had a positive ANA test but a low titer), then Crohn's arthritis (against the wishes of my "save all" doctor who thinks he's got me in remission). I was found legally disabled in January 2010.

My Dad died suddenly at 49 years old last year in March, right before he died my GI sent me to the rheumatologist, who wanted to add methotrexate to the Cimzia. When my Dad died two weeks later I couldn't start the MTX as I had to fly out of town and help my Mom move from Hawaii. I was in the worst joint flare of them all, nothing on my left side of my body would move, I ended up in the Hawaiian ER with the attending staring at me saying, "Get the hell off this island, there's nothing we can do for you here and you are in desperate need advanced of medical attention", she gave me fentanyl patches, percocets, and valium and shoved me out the door. Once I strapped on those fentanyl patches, I was in heaven, I could walk again and was literally in NO JOINT PAIN (why would I be? I was completely drugged), but at least I was able to walk in the airport and get my butt home to TN.

Anyways, when I got back from Hawaii and hadn't taken any Cimzia, my joint pain began to subside, I was beginning to think this was drug-induced lupus as I never had joint pain before the biologic. My GI insisted I get back on a biologic, so we switched me to Remicade. By the time I got my first dose I was joint flared again, I couldn't straighten my elbow AT ALL, the second the Remicade was in my system the elbow released. I had no arthritis for about 3 months, and now I'm completely flared again. Went to the rheumy again and she again wants me on MTX (which I'm dreading)...and my last scope showed no active Crohn's...in fact, my colon looks like I've never "had it" it's so healthy right now. My rheumy now wants to call this RA vs crohn's arthritis. The only problem is, most RA patients have bad arthritis in the mornings and it losens up by the end of the day...mine progressively gets worse towards the end of the day to the point where I can't walk or pick myself up off the couch. My hands, fingers, wrists all swollen and barely mobile, knees, feet and bottoms of feet, ankles, and today my hips...the other day my lower spine actually had a noticeable golf ball sized swelling directly on top of my spine...now my upper spine has it. I've also got swelling in my jaw to the point where it hurts to chew and my teeth hurt to bite down, that and my right jaw hinge is so swollen it doesn't allow my teeth to touch on my right side!

Okay, so whatever joint's i'm using throughout the day are usually the worst flared at night, with the exception of it being completely random on occasion...things start swelling around 2-3pm and get worse until I can't move around 9-10 pm.

I'm so sick of all my doctors shoving needles in my arm, or meds down my throat...I just want an answer! A real answer, not one where they send me to someone else to prescribe me yet another toxic drug. I'm freaked out at what these drugs are going to do to my liver, or cause me to have cancer (which I have a very high family history of)...I'm tired of my doctors saying "we'll deal with it when we run across it"...what happens when I die because we were waiting to deal with it whenever it happened??

Donielle

Diagnosis: Medullary Sponge Kidney Disease 2003, Crohn's Disease 2004, GERD 2007, RA vs Crohn's arthritis 2011.
Procedures: hemorrhoidectomy 2004, numerous kidney stone removal surgeries, bowel resection 2004 (perforated small bowel and softball size abscess that almost killed me) and 2005 (to correct my doctor's perforation during a scope).
Medications: Currently Remicade, Nexium, Ambien CR 6.25, Folic acid, Imitrex as needed (for migraines associated with Remicade), Inderal (for migraines associated with Remicade) and prescribed MTX which I haven't started yet, waiting on next period to make sure I'm not prego as no one needs a 6-eyed baby.
Past Meds: Cimzia injections, Imuran, 6-mp, Pentasa, Prednisone, Entocort, Cipro, Flagyl, Percocet, Vicodin, and I can't think of the many others of the top of my head.

Dude, don't get on pain meds. It will only add to your problems and list of side effects.

The Remicade is causing your arthritis. Before your doctor prescribes you a med read the side effects. It's your life not theirs. It's right on the Black Box warning, some doctors are just too dumb and proud to admit that. At least mine was. (You'd think she owned stock in Johnson and Johnson)

Once I refused my last infusion, it took about 2 months for the pain to go away. Good luck man.