is it lupus? need your help

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Contentprof
Regular Member


Date Joined May 2014
Total Posts : 412
   Posted 7/26/2014 12:20 PM (GMT -6)   
This is my first post here. I've come from the UC forum. And here's my post there on severe joint pain, stopped remicade: http://www.healingwell.com/community/default.aspx?f=38&m=3129960&p=1&ord=a
Wasn't getting much of a response there because I think many UCers use anti-TNFs.

The rheumatologist is trying to determine what I have, whether it is adverse reaction or kicked off concurrently lupus, myositis, fibro, etc. So far i have tested positive for ANA, very high titer for anti-dsDNA, and now positive p-ANCA. Major symptoms are severe (debilitating at times) joint & muscle pain and weakness. Over the past month, it has moved around from hands/wrists to elbows/shoulders. Couldn't use my hands & arms for a while. Now with the help of prednisone, I can walk, carry a bag, etc. but if I do too much or stay in one position, it results in severe pain of affected joints/muscles results for a few days and then moves to another area.

I've spent weeks reading all the resources here in related forums & underlying medical articles. But your experience would be very helpful. Has anyone had this combination of things? Are there other tests we should be doing? Feeling grateful to learn from your past posts, and for prednisone! I'm discouraged and scared, as you can imagine. {I'm going to post this on the fibro chat too because I'm desperate for support. My apologies for cross-posting...}
55 yrs old. Ulcerative Colitis >10 yrs. For flares failed prednisone, cortenemas, mesalamines (hives, fever), 6mp (fever), Uceris. Remicade (began 12/13), severe flare vanished. Update 6/30/14: severe joint pains (migrating); prednisone 40 mg; stopped remicade. Dx so far Anti-TNF adverse reactions; what else? positive ANA, high anti-dsDNA, positive P-ANCA. No Dx or next steps yet.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/27/2014 11:52 PM (GMT -6)   
Hi there, sorry that you've needed to come find us here at the lupus forum. I have a friend who has crohns disease and she was treated with remicade and she got drug induced lupus from it. They began to treat her lupus with prednisone and methotrexate and was able to clear up the lupus.

She is currently on humira and using weekly is showing that drug induced lupus is starting again. She's in a position where she need to make choice as to do it weekly and deal with lupus and lessen her crohns. Or do the humira less often and have less or no lupus symptoms but worsening crohns. It's a very hard choice to make. Hopefully, she'll see this post and can give you some information about it.

It seems once you have one auto immune disease you can get others. I've got both RA and Lupus, plus fibro. I recently found out I have T-cell LGL Leukemia. This is a leukemia that's common in RA and auto immune disease patients.

Lupus isn't DX'd on just labs, you must have at least 4 of the 11 symptoms of the disease to get the DX and treatment. Lupus can look like a lot of other diseases and it's know as the disease of a 1,000 faces. I can say I've had lupus since I was 23 years old maybe younger, and I didn't received my DX and didn't begin treatment for 13 years after they first mentioned it to me at age 23. I was 36 years old when I found out I had this disease. It took my Doctors 13 years to say yes I have lupus. Some folks are lucky and get a DX right away and others are like me and wait for many years before getting help.

Lupus patients vary greatly from each other. Some are mild in cases and can get by w/o medications and others are very severe, (like me) and I've responded to nothing and I've tried everything but Gold injections. If you go to the lupus foundation on the web they will have the list of symptoms and like I said you must have 4 of 11 to get a DX and treatment.

Other than the labs you listed, they also look at you inflammation markers, and your complements. I would suggest, if you haven't already, start a journal that lists all symptoms that you're having. Put in the level of pain, the intensity of it, what you were doing, etc. These types of journals are very helpful to our Rheumys. Also, if possible take photos of any rashes, swollen joints, etc to show them too.

I hope this helps some, check out the lupus foundation and then feel free to come back and ask as many questions you feel you need. Hopefully, you don't have both of these awful disease, but if you do, I pray that your Doctors can get you well really fast. Take care and welcome to the lupus forum.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Contentprof
Regular Member


Date Joined May 2014
Total Posts : 412
   Posted 7/29/2014 11:50 PM (GMT -6)   
This is such a helpful reply! Thank you!
I've never had this kind of pain. I have such admiration for all of you summoning the strength to keep going from one day to the next.

As I learn more about my situation it turns out there's plenty of studies documenting the anti TNFs causing more severe symptoms than regular drug induced lupus. They call it ATIL vs DIL. In many cases it resolves but in many it takes a long time, or doesn't or it triggers SLE.

I'll keep reading & drawing strength from your support.
55 yrs old. Ulcerative Colitis >10 yrs. For flares failed prednisone, cortenemas, mesalamines (hives, fever), 6mp (fever), Uceris. Remicade (began 12/13), severe flare vanished. Update 6/30/14: severe joint pains (migrating); prednisone 40 mg; stopped remicade. Dx so far Anti-TNF adverse reactions; what else? positive ANA, high anti-dsDNA, positive P-ANCA. No Dx or next steps yet.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 562
   Posted 7/30/2014 8:02 PM (GMT -6)   
Hi there,
 
I have had  Crohn's disease for 34 years.  Approximately 10 years ago, I was on Remicade infusions for it and I developed Remicade induced Lupus.  One morning I had pain in my right knuckle, and the next day it was in my left shoulder.  It seemed to jump from one side of my body to the other becoming more severe each time.  I remember I couldn't get up and down off the toilet, I couldn't lift my right arm high enough to pour water into the coffee maker.  I went to the rheumatologist and she increased my prednisone to 25 mg and added 25 mg MTX.  That was the only medication that would help with the pain.  It took about one year for my bloodwork to return to normal, and at that time I started Humira.  I have been on that for almost 6 or 7 years (I lost track), but now my ANA is positive again and I do have some joint pain in my hands, but nothing like before.
 
I hope you feel better soon.
 
Julia
 

Contentprof
Regular Member


Date Joined May 2014
Total Posts : 412
   Posted 9/1/2014 9:48 PM (GMT -6)   
Checking in a month later with an update and my deep appreciation for you folks on the lupus forum, when I was in crisis and trying to figure out what was going on.
Although we still don't know for certain, the diagnosis is that the remicade caused Anti-TNF Induced Lupus and polyneuropathy, but I'm doing much better a month later and tapering the prednisone down from 40 mg gradually. (By the way, I couldn't also treat it with methotrexate due to lung problems.) Fortunately, pred has been enough to turn it around.
Just wanted you to know that your support has meant the world to me, as I tried to get my footing with these unexpected and debilitating symptoms, establish a relationship with a knowledgeable and caring rheumatologist, on top of managing ulcerative colitis. A heartfelt Thank you!
55 yrs old. UC >10 yrs after proctitus. For flares failed prednisone, cortenemas, mesalamines (hives, fever), 6mp (fever), Uceris. Remicade (began 12/13) & severe flare vanished. Update 6/14: severe joint pains (migrating); prednisone 40 mg; stopped remicade. Dx: Adverse reaction to Remicade: Anti-TNF Induced Lupus and peripheral neuropathy. Next UC meds?

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/2/2014 10:31 PM (GMT -6)   
Glad to hear that you're beginning to feel better. I'm sorry that you've been unable to use the MTX due to lung issues. It sounds like the prednisone did the trick though.

I will continue to pray that you continue to improve and feel back to yourself real soon. I'm glad that we were able to provide some help.

Please take care and come back if you have any more questions.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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