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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/10/2009 1:25 PM (GMT -7)   
You folks have heard what's going on with my husband. Oct 6 Remicade infusion, everything was good, he was getting past the c-diff recurrence. Starting around Oct 28th, he started having pain in his left glute, which got worse, got a stiff neck, and his knee started to swell. Went to orthopedist, he took x-ray of spine, and said inflammation of SI joint, and suggested NSAIDs. We went to talk to Gastro the next day, but by then his knee was the size of a football, and he couldn't walk at all and got a slight fever. Went to the ER, got 60 ccs drained, and they said it was inflammation, not infection. Next day went to orthpedist, got 80ccs drained, and cortisone injection, and started 10mgs of pred.

Gastro and rheumatologist have ordered ANA, antihistone antibody, anti-ccp, RF factor test, and hepatitis A/B tests. The results are in, but they haven't reviewed it yet, and won't tell us what the results are yet. In the meantime though, hubby is holding steady - knee is still puffy but not as bad as before, and he's able to walk with a cane, his back still hurts, and his neck is still stiff, but he's able to function somewhat.

He's now been on 10 mgs of pred since last thursday, and so far, there has been no improvement in symptoms. I think basically the cortisone shot helped, but everything else is still the same. Also, his left knee is still warm to the touch, which makes me believe there's still an inflammation process in action there. I think it's getting worse - I think his knee is getting more swollen each day . . . I think the cortisone shot is wearing off.

Here are my questions:
1.) Should we call the doc and see if he should up the dose of steroids? Is the medrol dose pack the way to go? The docs seem to be taking their own sweet time, and in the meantime, I think my husband's knee is starting to swell again . . . I think the shot is starting to wear off.

2.) What other tests should be run, if the tests above don't provide any positives? He's due for his next remicade infusion on Dec 1st. I am scared to try the remicade if it is the remicade that is doing this to him.

3.) The doctors I think will want to start him on methotrexate in addition to the remicade, if he doesn't have markers for lupus. What's the best way to take methotrexate? I've heard of some awful nausea and diarrhoea issues with methotrexate. I know there's oral, and injectable - which route is best?

Thanks for any answers / suggestions you have. I am so anxious, I'm making myself sick. I wish I could figure out how to deal with all these problems - c-diff, crohn's, now this . . .

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 11/10/2009 1:37 PM (GMT -7)   
PV,

As for his medications, I am sorry, but you really need to talk to his doctors about that. I do know that many on here have had success with Methotrexate. I have heard that the injections are better and have less side effects than the pill form.

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"*

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 11/10/2009 1:53 PM (GMT -7)   
The injections usually cause less nausea and won't cause stomach upset. Try to take one thing at a time, see what the results are first before worrying too much.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 11/10/2009 3:08 PM (GMT -7)   
The back is probably sacroiliitis which happens in a fairly large number of Crohn's cases. Something like 25%, but I don't recall exactly. Supposedly that is caused by high circulating TNF levels, and treatment for it using TNF inhibitors has been tried and the results were favorable. The time involved for getting the effect of the Remi varies from about 6 weeks to 10 weeks or more, so your husband may still see a turnaround from the infusions. Several people on the forum have posted about joint pain following remicade in the past, so this seems to be a common result. I don't think that you can count remicade out yet on the basis of the problems so far. It is still too early to do that. One thing that you could try that should help is a grape seed extract. It is very high in polyphenols, catechins and anthocyanins which all are strong antioxidants and have been used to control inflammatory responses in similar illnesses. You might want to ask your doctor about it in case there is a conflict between the extract and his meds, but I would not expect one.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/10/2009 4:12 PM (GMT -7)   
Keeper, I am confused. He's been on remicade since April 2008. All of a sudden about 3 weeks after his last infusion, he gets this inflammation of his joints, and most debilitatingly his knee, and they've so far gotten 140 ccs of fluid out of his knee. And even with cortisone and being on 10 mgs of pred, his knee is still swollen and warm.

I thought remicade is the treatment for all such inflammation - why would he have such severe inflammation when on remicade? Is this Crohn's related inflammation that simply is not being controlled by remicade? His GI thought it was very odd to have such severe inflammation while on remicade, which is why we're consulting a rheumatologist to see if anything else is wrong. Has this kind of inflammation happened to others taking remicade? Was it caused by remicade, or was remicade just failing to do the job of keeping the inflammation down?

Now, how do we figure out if this is inflammation that is too severe for remicade to handle, or if it is remicade causing the inflammation because his body is rejecting the remicade? I'm afraid of both continuing the remicade and stopping the remicade. I'm worried that if we continue and this is because of the remicade, it's going to get worse. I'm also worried that if this is despite the remicade, and we stop the remicade, that it will get a whole lot worse. :-) See, don't know which way to go here.

They are doing the tests for drug-induced lupus and RA, so hopefully we can cross that off our list and not worry about those (if the tests are negative).

The doctors are saying that it's not quite useful to get the HACA prometheus test right now because when you're having a reaction like this, you don't normally see the antibodies - because the antibodies are busy binding to remicade molecules and neutralizing them. So, they're saying that you have to wait a certain period of time before testing for antibodies after taking remicade. But by that time, it'll be time for his next remicade infusion. Right now, they're saying that if it isn't lupus, to continue with the infusion while taking methotrexate as well and see how that goes.

I will ask the doctor about the grape seed extract. Thanks for the tip. My husband just told me that his left knee feels weaker today. I think it's time to hound the doctors tomorrow. I know I want to do something to not let the situation get worse before the weekend.

What would you do in our shoes? If the lupus test is negative, and they found no other positive markers for other disease, would you continue with the infusions, or stop?

Thanks for helping me think about this. I am just trying to wrap my head around the facts, and figure out what the right course of action is, and why (we will of course consult the docs).

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 11/10/2009 10:59 PM (GMT -7)   
My initial impression is that it is that enthesitis in his knee that I was talking about before. It is more severe than my experience, but I have mild symptoms and there is a lot of individual variation. Definitely you want to treat the symptoms, so prednisone - either injected into the joint or more by mouth, whatever the rheumy/ortho suggests - or methotrexate for the knee are good options. If it is enthesitis or whatever they label it, it should go away on its own. You still have to deal with the pain and debility until it does though.

All this assumes that it is not lupus. If lupus shows up in the tests, it may be caused by remicade and stopping remicade has caused induced lupus to fade over time - but it may take months to happen. A lot depends on the test results and the tests may have to be repeated to confirm them and avoid false positives or negatives. I personally doubt that it is lupus because of the swelling. Lupus causes joint pain and swelling is unusual. But I would not want to argue with the test results.

Then there is the fever he had. It was a bit late showing up if it was an allergic reaction to remi, but still not completely impossible. Another infusion will certainly make it clear whether there is any allergic problem. You should talk to the staff before the infusion and tell them that you are concerned about a possible reaction. I would not make the decision about that before then, especially since your GI does not think that it is the problem.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/11/2009 7:27 AM (GMT -7)   
4. Use good judgement. NEVER rely on information or opinions exchanged via the forums or chat rooms to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.


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 11/11/2009 7:31 AM (GMT -7)   
Thanks Keeper! Hubby's knee got worse last evening, started swelling up some more. We upped his pred from 10 mgs to 20 mgs (once in am, and once in pm), and he needed lortab to be somewhat comfortable and sleep. He's up now, and his knee is maybe slightly better than last night. It looks like the cortisone shot has already worn off (it's only been 6 days)! This is very alarming to me.

The last I heard the doctors had the results, but they hadn't reviewed them, and they won't tell us anything. But I think today we have to try and reach them, and maybe just go ahead and see if we can see at least the rheumy before the weekend to drain his knee again, if the swelling doesn't go away today. He's back to really hobbling with a cane, and has very limited mobility in his knee.

His neck and SI joint seem to be holding steady though - those have actually gotten better. So, from what you're saying, it sounds like this is inflammation that the remicade has just not been able to suppress - enthesitis or whatever it is. It was pretty abrupt onset, and does involve more than the knee, though the knee is what seems to be most bothersome because of the fluid collection, the neck and SI joint seem to have calmed down significantly with the pred.

I hope we'll get some answers today. I hope his knee improves from bumping up his pred from 10 to 20 mgs. I am still worrying about the recurrence of c-diff - the last time he was getting off the vancomycin, when they stopped the vancomycin when he was on 10mgs of pred, it came back. He was only able to stop the vanc after completely getting off the pred. We're playing a pretty tricky game here . . . I hope it doesn't get worse for us, and we can deal with just the joint issues, rather than joint issues, and c-diff. Trying to stay positive . . . one thing at a time.

So for today, we're going to try to get the docs to give us results and a course of action. And if his knee needs it, and doesn't respond to the increased steroids, get it aspirated once more.

Thanks for having this dialogue with me. It helps me relieve some of my anxiety, so that I can be a better mate to my husband and not saddle him with all my anxiety and the panic that I occasionally feel. 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


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/11/2009 7:58 AM (GMT -7)   
Talked to the receptionist at the rheumotologist's office. She said that all his labs are now back in, but now the rheumy has not had a chance to review them. Since his knee is getting worse, and we've had to up the steroids, and I'm scared of going into the weekend and ending up at the ER, and also to kinda force them to review the results sooner rather than later, I've gone ahead and made an appt for my husband at 10:40 am tomorrow with the rheumatologist. I figure if his knee gets worse, she can aspirate it tomorrow to give him some relief, and put him on drugs as she sees fit.

Hopefully we'll have some answers, and a course of treatment that will help my husband! Keeping my fingers crossed.

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 11/11/2009 12:56 PM (GMT -7)   
:-( Looks like my husband's knee is going downhill again! It's full of fluid again, and resembles a football again, despite going up to 20 mgs of pred yesterday. None of his docs are available today to see him, but I do have an appt tomorrow am.

Now we're trying to decide if I need to take him to the ER to aspirate his knee again to get the fluid out and give him some mobility again. I was wondering if it would help the rheumatologist to see his swelling (last time we saw her, he had just gotten the fluid drained, and a cortisone shot), to come up with a course of treatment for him. If it would help the rheumy to see the swollen joint, and will help her formulate a course of treatment to fix this for my hubby, he will willing to just take the lortab and grit through it until tomorrow.

Otherwise, he thinks it would be best to go to the ER while it's still daylight, and get it aspirated, and get a somewhat decent night's rest.

He isn't running a fever, but then again, pred suppresses fevers, so it's hard to tell. I don't see an "emergency" other than not having his joint aspirated means he'll probably not be able to rest at all tonight, and I don't want him to get worn out and end up having his guts flare up too.

What should we do? ER or no ER?

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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