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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/12/2009 10:37 PM (GMT -7)   
My husband's knee is swollen again! He got it aspirated (60cc) this morning around 11:30. And it's big like a football again. It's not tight yet.

I read that some physicians recommend wrapping a compression wrap around it. But so far, he's had it aspirated 3 times, and none of them mentioned that. I wonder if his synovial sac is just overstretched now.

I did read that large knee effusions can rapidly re-accumulate, and need aspiration in "a few days to a few weeks".

I didn't realize that would mean almost every single day. I think the orthopedist did a better job of draining the knee - the rheumy just kinda got a large portion, but his knee still looked swollen when he got out of there. I guess if it's tight and he's in pain again tomorrow, we'll go to the orthopedist if he's available. And over the weekend to the ER if it is necessary. All these docs are certainly making plenty of money from my hubby. We've had 6 doctor visits in a week - at $40 a copay, plus an ER visit under our belt, that $340 for the week. Forget the money, it's just so darn hard to watch him hobble so bad.

The thing is, if it isn't for the fluid accumulation, he's fine. Says he has no pain. It's the fluid that is causing him problems, nothing else. I wonder if you can put a shunt in or something . . . anyone know?

I absolutely detest this disease right now. Tired and frustrated,

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 11/13/2009 12:04 AM (GMT -7)   
Your husband's knee problem is certainly more extreme than most. I did see a paper citing frequency of drainage for several cases on the order of every 2 days, with only 1 case being drained every day. Such frequency was only found in about 10% of the cases listed. It occurs to me that with his previous fever, this may be reactive arthritis, but that usually affects joints in pairs.

The only thing that you can do is treat his symptoms and wait for improvement. It does not seem that much help can be expected from NSAIDs for this kind of problem and NSAIDs can cause problems for his gut anyway. I think that you have to be guided by his medical team, but you might want to ask about other things that can be done, like cold compresses or massage to promote drainage and flushing of the joint.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/13/2009 6:41 AM (GMT -7)   
I do get my knees drained weekly, but when I am really flaring hard it cand be daily. I have found sleeping with my knees and feet above my heart helps. I also put cool refrigerator (not freezer) packs on them with ace bandages. If it realy gets bad I use the cooler system from my knee surgeries.  Unfortunately I have to keep them elavated above my heart all the time (except bathroom breaks)when it is bad.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 11/13/2009 6:48:27 AM (GMT-7)


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/13/2009 7:04 AM (GMT -7)   
Thanks you two! I am going to call his orthopedist (who seems to be really good at draining it) and see if he can do it today. It does look a lot like reactive arthritis to me . . . and I read that not much helps with effusion (not even steroid injections into the knee, or the systemic steroids that he is on). The thing is, it's the effusion itself that is the problem - he seems to be without pain or discomfort when the effusion is drained.

I asked the rheumatologist yesterday what we should do to try to keep this from happening so quickly, and she said just don't use the leg as much, and give it rest. Well, all he's done is put his leg up - not all the way above heart level, but definitely elevated, and I did put ice on it every few hours.

I read that perhaps a compression bandage can help with prevention re-accumulation of the effusion - I will ask the orthopedist today (if he can see us), about doing that without cutting off blood circulation.

What a darned mess! The rheumatologist wants him on MTX. Apart from this profuse effusion, he has no other pain (and his neck and back are much much improved), and when the effusion is drained, he does fine. Will MTX fix this? Or does he just need time?

I'll update after seeing orthopedist.

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


lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 11/13/2009 7:21 AM (GMT -7)   
MTX will not provide an instant cure, it take a good few weeks even a couple of months to get into the system and start working, by that time the flare may have resolved itself anyway BUT MTX could well prevent it from happening again and could treat this problem if it continues but it'd take time. MTX also reduces the odds of building up antibodies to the remicade which is why doctors quite like using the two together, there is an increased risk of lymphoma but I've been told that appparently its still a teeny tiny risk, they just have to inform people of all possible effects so they don't get sued.
 
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/13/2009 7:29 AM (GMT -7)   
I am on MTX and it has been the best thing I have used so far, but it did take about 3 months to work.
It has to be elevated above the heart.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 11/13/2009 7:34:32 AM (GMT-7)


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/13/2009 9:31 AM (GMT -7)   
The orthopedist said come right away, if you want your knee drained today. So, we went right away. He drained another 80cc of fluid. And he said that since it has been drained since the last cortisone shot, he recommended getting another shot today - said that he wasn't worried about joint instability from just 1 more shot. So, he put lidocaine in it, and also gave him a steroid shot. This time, he wrapped it in a compression bandage and put an ace bandage on top of it.

How on earth do you elevate your leg to above your heart level and still sit up? I guess that's something to try to figure out today. I will put ice on it as soon as he has had breakfast.

They moved up his remicade infusion to tuesday. Will remicade help with this at all, or is MTX a better drug for this? Are systemic steroids (he's on 40mgs of pred) totally useless for this?

Also, I have maybe what is a totally stupid question. If the effusion the inflammation, or is the effusion a symptom of the inflammation? Ie, is something in his knee joint inflamed, causing the body to react with effusion (which maybe disproportionate response in my husband's case), or is the effusion the inflammation itself? Also, is the size of effusion an indication of how bad the inflammation is?

Thanks for your advice and your support. This is very hard to deal with.

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


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/14/2009 1:50 PM (GMT -7)   
First of all try elevating when he is sleeping I use a couple of those pregancy wedges taped together.
I also use this for sitting in the recliner.
Check for underlying heart issues as well. I had some issues at 28 and I am a former marthoner, but I gained a tremedous amount of weight.
I do not know what his issues stem from. For me this was an outlet for overall inflamation due to being surgerically rebuilt. I have lots of metal in my left leg. So my crohns manifasts in bone pain as well as intestinal issues.
I do not know if different medications will work, but I am a big believer in throwing everything ya got at getting better.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 11/14/2009 2:06:45 PM (GMT-7)


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/14/2009 3:09 PM (GMT -7)   
MMMNAVY, thanks for the reply. He has been keeping his leg elevated when sleeping (since he can't fold it flat anyway). On the recliner, he's been propping it up, but not quite above his heart. The cortisone shot last time, kept him well for 5 days. Let's see how long he has this time. Unlike last time, we're icing his knee regularly, and we're keeping a compression bandage on it, since I read that some physicians think that that will prevent reaccumulation of fluid on the knee. I sure hope it works.

We are throwing mostly everything at it. He's now on 40 mgs of prednisone, has gotten 2 cortisone shots in his knee, and we've moved his remicade infusion up to every 6 weeks, his next one will be tuesday. I am worried that remicade (if it is actually causing this) will make him worse, not better, and that scares the heck out of me. But I have to put faith in his doctors and everything I've read as well. He does have joint pain and fever that begins about 4 hours after his infusion every time, but it goes away in about 24 hours. I don't see why his body would decide to attack remicade over 3 weeks after his infusion. And he has tested negative for lupus and RA.

So far, all we have is is that it could be reactive arthritis, or IBD related arthritis. His heart seems fine - his BP and pulse are normal, and he's not shown any insufficiency, but I will ask his docs to check him out just to be safe. He has an MRI of the knee at 5:30 pm on Monday to see if there's anything mechanical that could be causing this or making it worse.

I'm hoping and praying that the remicade is going to kick the inflammation when he gets it on tuesday. If it doesn't, then, we'll add the mtx and give it a whirl. I know that people do sometimes have flare up on remicade, that they just treat with a tapering dose of steroids. I'm hoping that's what this is - inflammation that remicade couldn't control, that we just have to treat with some steroids, and more remicade.

Thanks for your advice and support. For now, he seems to be doing ok after the cortisone shot with rest, ice, compression and elevation. But I don't know how long this will be . . . for now we're trying to have a quiet weekend, and to build up strength for whatever next week throws at us.

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


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 11/14/2009 11:51 PM (GMT -7)   
PV I'm sorry to hear you and your husband are having such a hard time getting this under control, you are being so proactive in his care with these doctors which is incredible. Glad to hear you're staying strong and it turns out both of our problems which may or may not be related to Remicade/Crohns end us up with Orthopedists and Rheum docs pulling for us... Good luck at the MRI and hope ur weekend is relaxing :)
24 female, dx w/CD finally in July 2009, currently taking remicade, prednisone to counteract side-effects of remicade, pentasa, cipro, flagyl, probiotics, celexa, bentyl, and biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/15/2009 9:18 AM (GMT -7)   
PV how is it your are able to get your husband in to see the docs so quick and get his tests so fast? It takes me at least a month to see my GI, Ortho or Rheumy if not longer. And then when you add in tests its even longer. You really must have good insurance. Are you in the US?

Hope hubby gets feeling better soon.

Hugs
Gail*Nanners*
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 11/15/2009 10:24 AM (GMT -7)   
Gail:

I think it's both decent insurance and just sheer good luck. I do live in the US, in Memphis, TN (maybe being a relatively small city helps). Our GI treated my husband when he was at his worst in the hospital, and when we call, he knows it's usually because something is brewing. He is so very nice to us, and fits us in and quickly as he can, because he has seen how badly this disease has affected our lives. He is a wonderful doctor and a very caring person, who cares about the quality of our life - we are very grateful to have him. He is young, and in the process of making a name for himself within the practice, versus already established, and only doing clinic a few days a week (my husband's old GI only worked 3 days a week, and he was totally impossible to see even if you had an issue. The nurse would say if you couldn't wait for the appt to go to the ER).

I remember once when my husband was well, having to wait 2 hours to see him. But when we saw him, he apologized for the delay and said that he fit in a few people who were not doing well. And we completely understood - I want him to fit sick people in, versus routine visits. I don't mind waiting when my husband is well. When my husband had c-diff, and it came back in Sep 2008, I remember, he did a colonoscopy for my husband at 7 am on a saturday, to get answers fast, and to upset his med routine as little as possible. He is quite knowledgeable, but pretty conservative - he won't take too much risk unnecessarily. I know we got lucky here, and for as long as we are here and he is in practice, we will continue to see him.

I got lucky with the Orthopedist and the Rheumy - The orthopedist is new in town (he joined the practice in town in Oct), and is building his practice, so he could see my hubby right away. The rheumatologist is a referral from a friend who has lupus, and she had a cancellation, and so could see us right away. Once you're in their books, the docs seem pretty willing to see you quickly.

The cortisone shot and 40mgs of prednisone seem to be holding my hubby steady for right now (knee still slightly swollen, but much better). I am hopeful that the 40mgs of pred + the cortisone shot will stop it from getting football sized again. I also hope the remicade on tuesday will help. The c-diff has been at bay so far, and I hope that continues to be the case.

Gail, I do try to be very proactive about my husband's health. I try to find doctors who are both knowledgeable and who fit people in who need the help, and I try never to abuse that (only insist on seeing them, when there's really a problem). Often times, with my husband's illness, I feel entirely useless, completely helpless, because it feels nothing we do ever helps. But I can see how waiting a month to see a doc would be catastrophic to my husband's health - he'd pretty much have to go to the ER all the time. I guess I can count that one blessing today, thanks for pointing that out to me!

I hope we all have a better week around the corner.

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


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/15/2009 5:27 PM (GMT -7)   
There is a cooler with a cirlation machine on top that keeps cool water constantly around the knee, but I was in the military when I got that so I do not know how much it costs.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/15/2009 9:43 PM (GMT -7)   
Hmmm, interesting. I asked the orthopedist nurse about this, and she said that those were expensive without insurance coverage. She said that right now, because it was systemic inflammation versus injury/surgery that the doc could not write a prescription for one of those things. I guess I'll have to talk to the rheumy about this, if my husband continues to have problems.

I am still rooting for this week to be better than last, and I'm hoping his knee has been drained for the last time. We have remicade to look forward to on tuesday . . . I am over here cheering for it . . . GOOOOO REMICADE!

:-D

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


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/16/2009 8:45 AM (GMT -7)   
Is he keeping those refrigerated gel packs on it all the time?
I use compression wraps to keep those gel packs on any time I need them and if you use the 6 inch ones you can walk around with them on. Further more I change those gel packs out every half hour to 45 mins.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/16/2009 9:59 AM (GMT -7)   
No, not continuous. he's doing 20-25 minutes with an hour break in-between. For right now, things are ok, his knee is holding, and seemingly getting stronger (probably the cortisone shot). I hope it lasts.

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


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 11/17/2009 9:14 PM (GMT -7)   
I know that you are getting a lot of different suggestions on ice pack solutions and I have one more from my personal experience. When I had both of my rotator cuffs done, my surgeon had me use frozen veggie bags instead of the regular ice packs. He specifically likes for joint repairs to use frozen peas because they can easily form around the whole joint and fill in the places a normal ice pack can't. He also had me rotate from 20 minutes of ice to 20 minutes of heat with a heated bean bag. This was really effective and still is for my arthritis. He really knows his stuff as he is one of the top knee and shoulder surgeons in the country and is the U.S. ski team surgeon. It pays off to live in a ski state if you ever need knee surgery.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/17/2009 9:56 PM (GMT -7)   
Thanks for the suggestion. I will ask my hubby to try the frozen peas on his knees - I think he'll try it as long as he can stuff it in those wrap things he got to put the gel packs in.

In the meantime, he got his 6 week remicade today, and is still on 40 mgs of pred. The cortisone shot + the pred are keeping his knee effusion down. I know it probably doesn't make a whole lot of sense, but it really seems like the compression with the ace bandage is keeping the effusion from building up. I think it's kinda like when you eat too much for a while, your stomach expands, and then when you reduce your intake, you still have the urge to keep eating and you get hungry because your stomach is all stretched out. I wonder if that can happen with the synovial sac - it got all stretched out with the large knee effusions, and is not back to size yet, and will take a while to shrink. I know it sounds like a load of crap :-)

What do you folks think?

I'm going to go sleep now, and I hope I'll wake up to my husband's knee back to normal size (but I am probably setting myself up for disappointment there). But improvement would be nice.

Have a good night 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


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/18/2009 9:35 AM (GMT -7)   
My husband seems to be improving (keeping fingers crossed). His knee was less swollen this morning, and he said his neck and back felt normal. There is only very slight swelling now in his knee. Hopefully that too will come back to normal soon.

Thanks for all the support I've gotten these last few weeks, when my husband has been struggling through this. We're not out of the woods yet, but at least we're moving towards the exit from the woods.

Hope all of you have a good day.

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

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