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Crohn's Disease
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Posted 7/30/2017 11:11 PM (GMT 0)
If you have joint pain that moves around, knee..ankles..elbows..etc., what are you taking or doing to relive the pain???
Posted 7/30/2017 11:39 PM (GMT 0)
plaquenil longterm (helps some what but not totally) and I ice the joints that are bothering me at the time. I used to use tylenol if its extremely bad but now I try to manage just with the ice because my liver has enough meds to deal with. Are you dealing with the joint problems from the remicade? Mine also started after the remicade but they could not find evidence in the blood work for drug induced lupus so I decided to just keep working with it since its helped the crohns.

Post Edited (Labradorite) : 7/30/2017 5:42:42 PM (GMT-6)

Posted 7/31/2017 12:53 AM (GMT 0)
My rummy thinks that Remicade may exacerbate the joint pain. She has me taking no more than 2000 mg of tumeric daily. Sometimes it seems to help others....not so much.

I also use ice and heat...and if desperate I will give in and take a tylenol.

I hope you find something that works for you.

Clo
Posted 7/31/2017 9:06 AM (GMT 0)
Hi Labradorite...yes the joint paint started and continued throughout seven months of remicade...Rheumatologist blood work showed drug induced lupus and suggested to get off it. Gastro guy agreed and we started Stelara.
Posted 7/31/2017 1:16 PM (GMT 0)
What blood test do they complete to look for lupus? What do positive results look like?

I have complained to my GI, the infusion center and my rheumatologists, I have blood work every 4 weeks and no one has suggested this. I wonder why????
Posted 7/31/2017 3:26 PM (GMT 0)
How long since you ended it? I was on humira first and was told to quite because of suspected DIL but they couldn't confirm that either, just worsening symptoms. Mine went away about two months of being off medications. I hope you have better results from stelara!
@clo, have you been to a rheumatologist, I can't remember? They are your best bet for diagnosis if your GI hasn't. They also have other more obscure tests they can run. I believe one was ANA and the other was one to check for muscle breakdown. I can't remember the name of it. I was told by my GI though that it is not always straight forward to diagnose. Both my GI and my Rheumatologist were highly suspicious of Lupus but I didn't meet every criteria for diagnosis so I'm continuing with remicade for now..
NY, can you share how you were diagnosed and correct me if I'm wrong in what I said?

Post Edited (Labradorite) : 7/31/2017 9:41:24 AM (GMT-6)

Posted 7/31/2017 8:14 PM (GMT 0)
I have been to my Rheumatologist. She ran blood tests and had xrays and said I have osteoarthritis moderate to severe....but she didn't say anything about lupus. My knees always hurt...my hips, ankles, shoulders, elbows and wrists.....it moves from place to place.

She said if the tumeric didn't work we would add plaquenil. This stuff comes and goes. I never know if I am suddenly going to be stuck in one position. One time my hips froze or locked in place and I was stuck standing up. Lol... You should have seen me trying to throw myself onto my bed like a stiff piece of wood!! Even I had to laugh at that one...as The Wizard of Oz floated thru my mind...and I compared myself to the Tinman.....

Post Edited (clo2014) : 7/31/2017 2:18:11 PM (GMT-6)

Posted 8/1/2017 1:25 AM (GMT 0)
Labradorite, when I went to the Rheumatologist he had me take seven blood tests. The results showed a negative RA factor but his notes stated that I had drug-induced lupus. Unfortunately I don't know what the name of the tests were.
Posted 8/1/2017 1:41 AM (GMT 0)
They test levels of antinuclear antibodies (ANAs).

If those are positive at a relatively high level, that can indicate an autoimmune condition like lupus (or several others).

They can then test for several different subtypes of antinuclear antibodies.

The subtype associated with drug induced lupus is the anti-histone antibody.
Posted 8/2/2017 6:24 AM (GMT 0)
Oh yes, I remember now. My rheumatologist tested the AnA and it came back normal but she tested other protein levels and several cam back abnormal and suspicious of Lupus but because the Ana was okay it couldn't be confirmed. I see my rheumatologist tomorrow, I should probably bring this up again.

NY- have you tried or been offered plaquenil? It's a pretty low risk drug and might be of use to you.

@clo that's horrible! I had something like that happen on a much smaller scale a few times in my hands since starting remicade and in my knee while on humira. It's absolutely horrifying! You suddenly become so aware of how trapped you are in this body!
Posted 8/2/2017 1:38 PM (GMT 0)
Rheumatologist's will typically start with testing the ANA, if that's positive they move on to more blood tests. When I experienced the joint pain that was moving from joint to joint I was tested for RA first, Anti DNA double stranded, ENA Antibodies (RNP and Smith), Histone Antibody and various other ones. The one positive test that typically points to Drug Induced Lupus is the Histone Antibody, however, it's not 100%. Good luck, the joint pain is the worst - comes out of no where and moves around. I found warm to hot Epsom salt baths helpful, heating pads, and wrapping disposable warmers in ace bandages around my wrists when I wasn't near an electrical outlet. Let me know if you have more questions, I'd be happy to try to help. As a reference, I was initially diagnosed with DIL but later changed to SLE as it didn't subside once I discontinued the suspected medication that was causing the issue (in this case I don't think it caused the lupus).
Posted 8/2/2017 1:40 PM (GMT 0)
The one thing that really helped with the joint pain btw was steroids. I did a Medrol dose pack and had relief within 24 hours. With that said, once I got to the end of the pack the pain came back within a few days. I went on steroids, 20 mg and tapered from there. The first time I was on them for 3 months, second time 4 months with a really slow taper at the end.
Posted 8/3/2017 4:49 PM (GMT 0)
Mrs. Brady.. is there a name for this migratory joint pain? It's tough when I'm at work. I take Tylenol arthritis...it helps. Will this go away once the Crohns settles down?
Posted 8/3/2017 5:54 PM (GMT 0)
@NY it can be really hard to tell whether the pain is Crohns related or from the lupus. Ive had both, medication and Crohns related at different times making really hard to distinguish and Its kind of an only time will tell type of thing. have you looked into plaquenil?
Posted 8/3/2017 10:06 PM (GMT 0)
Labradorite, I haven't tried plaquenil. I might ask my Rheumatologist. Thanks
Posted 8/4/2017 12:38 PM (GMT 0)
I second what Labradorite said, sorry couldn't be of more assistance on that front.
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