Ok, what should we do now?

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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/3/2009 10:46 AM (GMT -7)   
Ok, so my husband saw the orthopedic doctor this morning. My husband had been complaining of pain is his left butt cheek, and from that, he's now got slight knee pain, and his neck is really stiff too. He thought it was muscular. The doc took xrays and says that he sees inflammation of the sacroileac joint. He doesn't see any other changes or anything that would indicate any arthritis to be involved. He actually said everything looks great, except for that inflammation. He said he's not sure what caused the inflammation, but at this point, he doesn't think there's any autoimmune disease involved.

Until last thursday, hubby had no pain - so this was sudden onset. He doesn't recall any one thing that he did to cause this, but he woke up with the pain, and over the course of the last week, it's grown to include his knee as well (it's slightly swollen). The doc doesn't think it's ankylosis spondylitis, because he sees no degenerative changes at all. He says yes, there's a slight chance that that's what this is, but he has no reason to believe that right now.

So, he wanted to put my husband on NSAIDs or COX-2 inhibitors (meloxicam), but we of course declined because of Crohn's. His only other suggestions were the Medrol Dose pack of steroids, or steroid injections into the sacroileac joint + physical therapy to strengthen stuff up. We've placed a call to my husband's GI to see what he recommends we do.

I am of course worried that this is Ankylosing Spondylitis. So what are the normal symptoms? It is usually sudden onset?

Also, what course of treatment should we follow - bite the bullet and take the NSAIDs, go with steroid injections, or take the medrol dose pack?

Your experience and advice will be appreciated.

Thanks,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1494
   Posted 11/3/2009 11:52 AM (GMT -7)   
Hi PV,
 
I'm no Dr. but I unfortunately do have a fair share of experience with back problems. The Sac. Joint is where the sciatic nerve runs through, and often time a shift one way or the other in the joint can cause a nerve impingement. Does you husband have any radiating pain down either leg,or butt cheek? 
You don't have to be doing anything strenuous to have a shift either. Sometimes it's just the way the stars are aligned that day.
As long as he doesn't have a herniated disc, he should heal up in a few weeks. Usually the pain will subside a little bit each day after the first week or so. 
I've never been an advocate of Chiropractors. If you would like to seek treatment, I would recommend a good Physiotherapy clinic, that has a reputation for dealing with backs. There are several home stretches that help alleviate the pressure. I would look to a friend for recommendation. 
I'm just guessing here, as I don't know exactly what's wrong of course. Hope this helps a little.
 
Tom.  
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/3/2009 12:10 PM (GMT -7)   
Well you should probably get in with a Rheumy to rule out AS. But in the meantime I think I would give the cortisone shot in the hip a shot. I have degenerative arthritis in both knees and will eventually require total knee replacements, but I have been able to hold that surgery off with the shots. They give me about 3-4 months of relief.

Also, did he by any chance just get off a Prednisone taper? The reason I ask is because I once weaned off Pred, and then had the worst pain in my hip for about 7-10 days. It eventually just got better after I took muscle relaxers for a time. Just another possibility, Pred always gives me alot of pain after I wean. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 11/3/2009 12:33 PM (GMT -7)   

I had a severe flare of sacroiliitis a few years back - the pain was horrific, my left side was most effected, the MRI showed huge amounts of inflammation in the sacroilliac joints and running down the tendons in my legs and up my back - I remember it used to take me about half an hour to go from a lying to a seated position in the morning and oh god sneezing was horrific!

Mine occurred at a time when my Crohn's wasn't active (it did flare soon after though) but they were still certain it was reactionary to Crohn's apparently even though this is classed as reactive arthritis it can appear alone or before Crohn's - confusing I know!

Luckily although it was a severe flare it did only last a couple of months and one of the best things to do is keep mobile and have a steroid shot straight into the joint (I can't take oral steroids but these local injections don't cause many if any side-effects) the more activity you do it lessens fluid settling in the joint making movement and pain easier. I reckon it was swimming that really got me through the flare - just being in water would take the pressure of the joint and relieve pain and meant I could finally move around a bit, I went every day sometimes twice a day just because it was the only time I wasn't in huge amounts of pain.


 
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/3/2009 1:49 PM (GMT -7)   
According to the doc he saw, there was nothing at all alarming in the x-ray. He said the spine was perfect, and that the only thing he could see that was wrong was the inflammation in the sacroileac joint. He said that lots of things can cause the inflammation - and because it's only been a few days, he doesn't think there is any evidence to call this AS. He says you need more than 1 episode of this type of inflammation with unknown causes to even worry about investigating further. My husband's crohn's has been in control, and the c-diff infection seems to be back in check. The I don't know whether this is reactive arthritis - unless of course his crohn's is about to flare, and I sure hope that doesn't happen.

The doc said that the injection to the sacroileac joint must be done with an x-ray, because it is so deep. No call back from the GI yet - but we have an appt with the GI tomorrow anyway - so I guess we'll just ask him tomorrow morning when we see him.

So for right now, we're just using heat and ice. He said to use heat in the morning to get him moving, and ice in the afternoon to bring down inflammation. I'll update this post when we figure out what to do.

Thanks for your support all. It is feels like if it's not one thing it's another. C-diff, Crohn's, c-diff again, Remicade causing fevers with infusions, now joint pain. I don't think this has anything to do with remicade - his last remicade infusion was Oct 6th. This started over 3 weeks after that infusion. My husband thinks this is just something he injured accidentally, and to just not think about it more than that. I guess we'll see.

I thought earlier this year that we'd finally gotten to stability - he had stopped the steroids and the vancomycin, and was doing good. That lasted about 6 months, and here we are again fighting c-diff, and dealing with more unknown issues. I just want to catch a break for a few years . . . I guess I'm just whining. On the whole, he's much better off than last year, and I really am thankful for that. But I did so wish that we would not find more new things to worry about. Oh well, I guess I'll deal.

Thanks folks,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/3/2009 11:28 PM (GMT -7)   
Sacroiliac pain - butt sore too - fits me as well. I even had a knee swell up, but that went away fairly quickly. All these are probably due to Crohn's. There is a gut pain/body pain connection that is still just being explored. They refer to it as "somatic algesia" but the connections are still really undefined. BTW the knee swelling is another Crohn's related inflammation of the ligaments and tendons around the joint usually called enthesitis. It can migrate from joint to joint. I was lucky enough that it just went away.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/4/2009 7:47 AM (GMT -7)   
We do tend to blame everything on Crohns and sometimes its just a pulled muscle, nothing else:) Hope he gets feeling better soon.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/4/2009 7:23 PM (GMT -7)   
Ok. I have an update. It's been a bad couple of days. Over the course of yesterday and last night, his knee swelled up to about the size of grapefruit with a lot of fluid. I had to help him around the house today to walk around, and I needed to go to the store to get a cane for him to walk. We saw the gastro today, who felt his knee, and thought that we needed to rule out other infection before starting steroids or anything else. He advised us to have the knee aspirated by the orthopedic guy to rule out infection before proceeding with cortizone shots, etc, and also asked that we ask the orthopedic guy to give us a referral to a rheumy. Also, the gastro ordered some blood work including a FANA (also known as ANA) and an anti-histone antibody test (to test for drug incuded lupus). He sent us home saying to keep the appt with the orthopedic guy tomorrow, and to go to the ER if my husband develops a fever.

Ok, so we come home, and around 1, my husband develops a fever - 100.1. His temperature usually runs around 97.6, so I figure ok, time to take him in. So I took him to the ER. They checked his temperature, and said it was medically irrelevant by their standards. They aspirated the knee, and it was clear. They also took some blood, though I didn't see any results from that. They checked the aspirate from the knee, and said that there was no infection, it was consistent with inflammation though some systemic process. They gave him lortab for the pain, and sent him home with the name of a rheumy to make an appt with.

So, here's my conundrum. It has been over 3 weeks since his last remicade infusion. I thought remicade was supposed to treat Enthesitis, and RA. He's still running a fever, and his butt, and knee is still hurting, and his neck is still very stiff. So, what is making him so ill? Does he have drug induced lupus? Does he now have lupus proper? Does he have rheumatoid Arthritis? Is it reactive arthritis, and a crohn's flare is upcoming soon? Can his body reject remicade so many weeks after an infusion?

For now our course of action is to see to call the rheumy at 8 am when they open, and get the earliest appt when he can be seen. In the meantime, we'll visit the orthopedic guy and get the shot of cortizone to the knee, and continue taking lortab for pain. I am of course very worried that on top of all this his crohn's is going to start flaring. I am also very worried that if he has to get on steroids again, that the c-diff will come back.

I need some help. Please help me understand what the right course of action is here, and what tests my husband needs. Also, I have another question. If his test does come back positive for drug induced lupus, does that mean he cannot take any of the anti-tnf class drugs?

I am beside myself with worry and anxiety. And I am so depressed that we can't seem to catch a break.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/4/2009 8:03 PM (GMT -7)   
That's a tough call ... I wish there was an obvious answer. If your husband is in a lot of pain then maybe a short course of prednisone will at least buy you a bit of breathing room. Steroids are also used to treat lupis, although I can understand your concern about not wanting to give him a bunch of steroids if he actually has an infection. Maybe if you gave him a strict version of the SCD intro diet it might help to give him a bit of an edge and lift his spirits(?) Probiotics might also help against the C-Diff. I really wish I could be more helpful, but I haven't done much Remicade so I haven't learned a lot about it.
34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/4/2009 8:29 PM (GMT -7)   
His fever is now at 100.3 and this is after I gave him 1 lortab an hour ago (which has 500 mgs of tylenol). Do I need to take him back to the ER if his fever hits a 101? They ruled out infection in his joints after they aspirated the knee. Were they wrong? Is this an infection? He's never run a fever for no reason before. His bowels seem to be doing ok, though of course, he's not very hungry at the moment.

I am worried about giving him steroids when he's running a fever . . . but again the fever could be because of the inflammation I guess. I do have both prednisone and a medrol dose pack at home . . . but we're wary of starting medication without direction from his doctors. I guess we'll just have to survive tonight and see how tomorrow pans out.

He's taking plenty of probiotics (SCD yogurt, + florastor + VSL). Hopefully that'll keep c-diff at bay, but I'm not sure.

Given that he's running a fever, I wonder if this is a delayed reaction to the remicade . . . it has been over 3 weeks since his remicade infusion . . . anyone have reactions like this 3 weeks after infusion?

Thanks for any ideas and advice folks. We need it.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/5/2009 6:27 AM (GMT -7)   
We made it through the night, but it was a rough night. He is still running a mild fever,and his left knee is swollen like a grapefruit again. I have to find a way to get him dressed and into the car and to the orthopedist this morning for more draining of the knee and a steroid injection. I hope that at least gives him temporary relief. I have to find a wheelchair if this isn't going to help, but it looks like none of the stores carry wheelchairs in the stores, just online. Do you folks know anyplace that rents or sells wheelchairs?

I will start hounding all the rheumys that I have contact info for as soon as 8 am rolls around. My husband slept fitfully for maybe 3 hours last night - the pain and discomfort kept him up for much of the night, and because of that me too. This is too horrid! Has anyone else gone through this? What was the course of action, and how long did it take until things improved?

Is the remicade to blame, or has he developed another auto-immune disease?

Please provide any input you have.

Thanks,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/5/2009 7:19 AM (GMT -7)   
I have never taken any of the biologics, but I am wondering if he is developing antibodies to it, hence all the joint issues. I would talk with the ortho doc and see what he says about his knee swelling and the fever and go from there. Sending you both good wishes and lots of prayers.

Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 11/5/2009 7:30 AM (GMT -7)   
Have the doctors ruled out remicade-induced sepsis that is caused by a fungus? You haven't mentioned anything about his pulse or breathing racing, or an elevacted WBC, but the other symptoms might fit. I also think your doctor should consider admitting your husband to the hospital given his overall condition. I'm so far out of my own experience on this one that I feel irresponsible giving much advice ... where are you located? Perhaps its time for a second opinion from another doctor?


34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 11/5/2009 7:31 AM (GMT -7)   
Inflammation in the bodycan cause a raise in temperature, don't know if it can raise it enough to cause a fever though.
 
Joints do tend to get more swollen over night as fluid settles there overnight so mornings tend to be the stiffest most painful time, perhaps lying in a warm bath and gently moving the joint in the morning will help ease the pressure and help some of the fluid disperse?
 
Steroid injections in the joint can take a bit of time to work so don't worry too much if its not an overnight change, I think for me it might have been about 3 weeks but I suppose there was a lot of inflammation to be tackled!
 
I remember being in bed at night was horrible, I'd fall asleep then move slightly in my sleep and it'd make me jump awake in pain. It was horrible so I do really feel for him.
 
I was offered walking aids or a chair, in all honesty I reckon a walking aid might be better then a chair as at least you can keep the joint moving some, my doctors did stress to me that trying to keep mobile is key painful as it is its much better for the joint and stops the fluid settling as much.
 
Really hope they get to the bottom of this soon or at least find a way to give him some relief!
 
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/5/2009 11:12 AM (GMT -7)   
Got back from the orthopedist. He numbed the knee, removed 80cc of fluid (they removed 60cc yesterday), and injected it with hydrocortizone. He also told my husband to take 10 mgs of pred daily and to follow up with a rheumatologist.

I've managed to get an appt with a rheumatologist on 10th of November - don't know much about the rheumy other than he is at a teaching hospital. I am worried that getting back on the steroids will cause the c-diff to come back, but I guess we'll have to deal with that if/when it happens.

I too am thinking this has to do with the remicade. That his body is starting to reject it. Hopefully we'll get some answers soon. For right now, my husband for the first time in days seems more comfortable (I think the anesthetic that they inject into the knee) is making him feel better. I'll hope that tomorrow is a better day than today, and he sees some improvement from the steroids.

It's not just his knee that's bothering him, it's also his neck and his SI joint. So definitely something systemic going on, and I'm hoping the 10mgs of steroids is good enough to help. I guess we'll find out.

I have not considered the fungus option - but I looked it up histoplasmosis, and his symptoms don't match. He has no other symptoms other than a slight fever (hovers between 99 - 100.3), and these joint issues. I think the fever is because of the inflammation - his knee is pretty warm to the touch.

I'm hoping his c-diff and crohn's will remain in check while we figure this one out. I hope he's not got another auto-immune disease. I'm hopeful right now that the cortisone shot, and the 10 mgs of pred will keep him going until we figure this thing out. We need to get on board with rheumy and figure out if it is the remicade causing this, and if we need to stop it. His next remicade infusion is scheduled for Dec 2nd.

I'm strongly leaning towards discontinuing it until we figure this out. What do you folks think?

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/5/2009 11:17 AM (GMT -7)   
PV you should really talk to his doctor about whether he should stop the Remicade or not. Thats not a decision I think we should be helping you make. There are other meds maybe they can put him on, so please do talk to his doctors. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1718
   Posted 11/5/2009 12:13 PM (GMT -7)   
PV,
I'm not so sure about the antibodies and the swelling. My symptoms were severe / debilitating joing pain. I never had any swelling involved, but that might just be me. Did they do any bloodwork to check uric (sp) acid levels, this sounds like how a friend used to get with the gout in his knee.

Keep us updated. Hang in there.......
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/5/2009 12:36 PM (GMT -7)   
lamb61 - were you on remicade when you had debilitating joint pain? What did you use to treat it? Did they figure out what was causing it? He has his blood work done early September and everything was fine, including kidney function (BUN and creatinine). I doubt he's got gout when his bloodwork was good just a couple of months ago . . . but I will be sure to mention this to our GI when we next see him.

Gail, I agree with talking to his doc. We absolutely will. I have read other posters on this board complaining about joint pain with remicade, etc. I was wondering what course of action they took, etc, so that when we talk to his GI we could have a conversation about it. His GI is great, but I have a feeling that my husband's case is one of the more complicated ones, and of course, it is like walking a tightrope - between the crohn's, c-diff and now whatever this is.

The GI did say there were other options, but that we first need to get this addressed and talk to a rheumy. Once we do that, and get this under control, we will be seeing his GI again to figure out what course of action to take. I would greatly appreciate input into what other people in a similar situation have done.

Thanks folks. For now, I'm keeping my fingers crossed that my hubby is going to find some relief with the cortisone shot to his knee, and the 10mgs of pred.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/5/2009 12:49 PM (GMT -7)   
The ANA test you mention - did they give you the results of that? I am assuming that it is the "Anti-Nuclear Antibodies" test to check for developing autoimmune problems. Here's a link for the ANA or FANA test: http://www.labtestsonline.org/understanding/analytes/ana/test.html
That test will tell you if the Remi has caused a lupus-like reaction which could account for the joint problems. Several other people here have reported joint problems (not as severe - usually just pain) after starting Remi, and it is a bit hard to understand since it is used to treat RA as well as CD. Definitely you should consult a rheumatologist as well as the doctors you have seen, but the results of the ANA test are the place to start.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/5/2009 1:02 PM (GMT -7)   
The test results are not back yet. I called to check today, but they are still pending. Yes, they are testing him both for ANA and anti-histone antibdy (which apparently is the test for drug induced lupus). I am just hoping that the steroids will help my husband feel better until we can get more definitive answers from the rheumy and/or GI.

The doctor has not ordered the HACA test (remicade antibodies), because he doesn't believe that this is a reaction to remicade (because it started about 3 weeks after the infusion). Has anyone had a remicade reaction 3 weeks after infusion date?
Thanks,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/5/2009 2:35 PM (GMT -7)   
Delayed reactions are known for Remicade. I can't say if they are common, but they do occur. The fever is suspicious, but any number of minor cold/influenza bugs could account for that - with remi, the immune response is reduced, so minor bugs can be troublesome. The real test will be the next infusion, if they don't want to do the HACA test.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/5/2009 3:23 PM (GMT -7)   
I am worried that we just started him on 10mgs of pred, when he's running a fever. . . but he's not getting any worse. The fever is still there, I just checked 100.4. I am thinking he may have either drug induced lupus or serum sickness, both of which can come with a fever. I managed to get an appt with a rheumy tomorrow at 1:30. Let's see what she has to say.

Here's what I'm thinking. If his test comes back negative for lupus, we'll get the HACA test for remicade antibodies. If he has neither lupus nor remicade antibodies, then, I guess the rheumy will have to run through her slew of tests to figure out if there is something else going on. If all the tests come back negative, we'll talk to the GI and consider continuing the infusions. If he either has developed drug induced lupus, or has remicade antibodies, then, we will probably decline and talk to the GI about other options.

At least he seems to be feeling slightly better with his knee. I hope we haven't hurt him by putting him on 10 mgs of steroids. I guess I'll see how things pan out tomorrow.

Thanks guys for all your input and support. It really helps coming here to tell you guys about our day and what we plan to do to deal with this situation and get all your ideas. I love you all for being here for us. Thanks!

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/5/2009 11:51 PM (GMT -7)   
about the knee - I've just been reading an article in which they review extraintestinal manifestations of joint problems and they note two courses for different severities of joint problems. The first (type 1) involves fewer than 5 joints with swelling or effusion and may be associated with other extraintestinal manifestations like eye and skin problems. That type is generally limited to 1 to 10 weeks duration and resolves without joint damage and occurs in conjunction with Crohn's flares. The second (type 2) involves 5 or more joints with swelling and is possibly associated with only eye problems (uveitis). That type also resolves, but lasts for several months and up to 2 years. This type runs a course of the disease that is not related to flares. The joint most commonly involved is the knee and treatment to control symptoms is required.

This set of joint problems is different from other arthropathies like reactive arthritis, psoriatic arthritis, ankylosing spondylitis, sacroilitis, rheumatoid arthritis, osteoarthritis, gout and inflammatory back pain. I will provide a link, but access to this article requires registration with the web site (Gut online).
http://gut.bmj.com/cgi/content/full/42/3/387

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/6/2009 7:48 AM (GMT -7)   
wow, thanks so much Keeper. I don't think my husband falls into either of those categories very conveniently. He has fewer than 5 joints, no other problems other than fever, and no crohn's flare up. I am thinking that this is either lupus from remicade, serum sickness from remicade, or reactive arthritis which remicade has not suppressed for some reason. The only reason I think reactive arthritis is because he was diagnosed again with c-diff in the beginning of September, and he took 2 weeks of vanc for that (again this c-diff came without any antibiotic use). His blood markers were all normal for inflammation, so we discounted crohn's. But perhaps he had a slight crohn's flare up which allowed for the c-diff infection in the first place. And since stopping the antibiotics, he's had a up and down cyclic problem with his bowels. But for the last 10 days he's been holding steady on a pretty restricted diet. So, that's why I'm thinking this is either remicade induced lupus, remicade serum sickness, or reactive arthritis.

One other thing. Since September, he's had problems with cold sores. No sooner than one disappears does another one crop up. He's never had this before, even when he was in the hospital on remicade and 120 mgs of solumedrol. It started this september. I wonder if that means anything.

But he's doing much much better this morning. No fever. His neck is still slightly sore, but he has better range of movement. His SI joint only hurts if he puts direct pressure on it, and his knee swelling seems to be slightly down, and the pain is not there. His knee strength is returning. He is able to walk around with a slight limp, and is just using the walking stick just to be careful (but doesn't need to put much weight on it). So, it seems the cortisone shot is helping, and the 10 mgs of oral steroids are also helping. So, it looks like the fever was directly related to the inflammation. You bring down the inflammation and the fever is gone.

We see the rheumy this afternoon. I'll update this post with what she decides to do - probably more tests for more things. And we still don't have results for the ANA and antihistone antibody.

Thanks so much all for your wonderful support.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life

Post Edited (PV) : 11/6/2009 8:21:39 AM (GMT-7)


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/6/2009 3:11 PM (GMT -7)   
I think that the knee thing is one of the problems that the article describes just because of the swelling. I think that the author was a little bit too category oriented and there may be more range of manifestations than he allowed for. I saw in the article that he eliminated some patients from his study just because they didn't fit well and he decided that their problem was from another cause than the one that he was interested in. The good news is that even severe cases resolve without joint damage.
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