Another autoimmune disease for this Crohnie

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Date Joined Nov 2003
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   Posted 6/19/2008 2:58 PM (GMT -6)   
I haven't been posting or responding to others much these last couple of months because I have been getting progressively more ill. Cutting to the end of the long story, last Friday I was diagnosed with Lupus [SLE].
As some of you might recall, when I was on Remicade I developed anti-dsDNA antibodies. These antibodies are specific to SLE. During clinical trials, about 35% of people that get Remicade develop these antibodies. Most do not have any symtpoms. If someone does develop symptoms, they go away within 3-4 months after stopping the Remicade. I stopped Remicade almost 10 months ago.
My rheumy ran lots of tests last month trying to get to the bottom of my increasing unwellness. The results are definitive for SLE. The $64,000 question - is this from the Remicade? My rheumy would not say so outright. He did say that anyone with Lupus should not take Remicade or Humira. I called my inside source at a large Remicade infusion center and asked how many people receiving Remicade have developed lupus outright. I am the third. So....
I am not trying to alarm anyone. The new biologics have literally helped thousands to relieve their symptoms. I was so crippled from the AS that I had to use a walker to move around. I was headed to a wheelchair when I started Remicade. I got my life back. My gut symptoms completely resolved and I was able to eat most anything for the first time in 30 years.
To anyone considering Remicade or Humira, please, please do not let this frighten you from having a shot at getting better. Carefully weigh your options and make an informed decision.
To those on Remicade or Humira, please report new symptoms to your prescriber. If you experience fever, new or deepening fatigue, inflamed and/or swollen joints, further or new hair loss, return of mouth ulcers, new or worsening joint or muscle pain, report this and ask to be checked for drug induced lupus. I am not a doctor. However I want people to know what I have learned over the course of this so they can look out for themselves.  I know that the doctor should order additional tests beyond the ANA. They should check the ANA and for the anti-dsDNA antibody. Also the following antibodies occur in lupus and my rheumy checked for a couple of these: anti-Smith, anti-Ro, or anti-La antibodies.
I also think that my rheumy's comment about people with lupus not having anti-TNF meds like Remicade and Humira is important. So should someone be tested for lupus BEFORE they start these meds? I think it is a question one should ask their doctor when having the discussion about starting Remicade or Humira. I think it is especially important if their is a family history of lupus. My ANA was negative 4 months before I started Remicade. However, I was not tested for the specific antibodies at that time.
I just reread what I have written so far and it sounds pretty gloomy. I really don't want to bum anyone out. I was stunned by the news for sure. However, I am getting through this.
Peace and health to all ~~ Ides


I notified my GI about this turn of events and his NP just called me. The NP is forwarding research from the latest studies on the association between Remicade and Lupus. It is going to be a very interesting read. When I get it and digest the facts, I'll report back. The NP indicated to me that the time for Remicade induced or Humira induced lupus to resolve might be longer than originally thought in some cases. The NP also told me that I might want to consider Tysabri now. No new meds for me for a while!

Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Post Edited (Ides) : 6/19/2008 2:15:12 PM (GMT-6)

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Date Joined May 2005
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   Posted 6/19/2008 3:14 PM (GMT -6)   
Ides - now that you know you have Lupus can they start properly treating you? Are there treatment or cures for Lupus? I send you my best and hope you get to feeling better soon.

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Date Joined Nov 2003
Total Posts : 7056
   Posted 6/19/2008 3:18 PM (GMT -6)   
Lupus is a chronic disease and managing symptoms and preventing flares is the goal. For right now I am on a burst of prednisone and will taper down and stay on 5 or 10 mg for the time being. Not a good thing with my avascular necrosis but I need to feel better! The rheumy discussed additional meds that we will consider at my next appt.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.

Rider Fan
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Date Joined May 2008
Total Posts : 1445
   Posted 6/19/2008 3:25 PM (GMT -6)   
Ides, sorry to hear about your latest dx. You wrote a great post though, very informative. It's only been 10 months, perhaps it will just take longer for you to get over the lupus symptoms and it will resolve. Let us know what those studies say when you have some time.

I actually didn't realize that normally Remicade-induced lupus cases resolve after the Remicade is stopped!
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 20mg prednisone.  Udo's Choice Probiotics (30 billion).

Regular Member

Date Joined Feb 2005
Total Posts : 455
   Posted 6/19/2008 3:27 PM (GMT -6)   
A guy at my work has Lupus, i thought i had it bad until I met him :( I hope you feel better soon
SCD since 01, remission since 01, occasional Arby's breaks :)

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Date Joined Jul 2007
Total Posts : 2142
   Posted 6/19/2008 3:54 PM (GMT -6)   
Hi Ides,

I am so sorry that you have gotten that from remicade, that is truly terrible. I got kidney disease from taking 5ASA drugs, though no one will confirm it. I got the symptoms of it after begining taking 5ASA's, took 7 years for a diagnosis.

My UC responded very well to 5ASA's, I am now not sure if I am failing Imuran and have only Remicade and possibly if I can get approved for Humira left as my drug options.

The kidney disease is also auto immune, so I think it would be good for me to be checked for those before starting remicade, thank you!

It is very scary, try to stay strong!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!

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Date Joined Mar 2007
Total Posts : 1642
   Posted 6/19/2008 4:23 PM (GMT -6)   
So sorry about the new diagnosis, I hope you get some relief soon...


Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also on Prilosec 2x a day for reflux.


Regular Member

Date Joined Oct 2007
Total Posts : 289
   Posted 6/19/2008 4:30 PM (GMT -6)   

Hello,please feel better!! I just got drug induced lupus from the Humira,I was on it for 10mths,they are thinking of putting me on Remicade,but no way hose' for me,I felt great prior to the Humira being on just the Asacol and Imuran,so that's my goal,since being off of the Humira,my skin and redness is about 95%better.


Good luck :-)

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Date Joined May 2007
Total Posts : 1284
   Posted 6/19/2008 4:55 PM (GMT -6)   
:(... Sorry to hear about your recent diagnosis, Ides. Good to hear that you're pulling through, though... Keep it up. *Hugs*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 6/19/2008 5:11 PM (GMT -6)   
Ides, so sorry to hear this, I hope you and your doctor are able to find a combination of meds that will help you to feel better and stay better.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/19/2008 5:23 PM (GMT -6)   
Ides I am so sorry you have been so ill and now have this new diagnosis. I am really having some joint pain myself, but my Percoset at least takes the edge off. I went to my Rheumy yesterday and she is offering all the usual suspects like MTX, Remicade, Humira or Enbrel. But my GI really doesn't want me on the stronger meds yet. I think he is really concerned with all the side effects. He only likes to put folk on these types of meds for more severe cases of Crohns. And my gut is pretty much in remission with just Asacol. I think at this point I will just stay with what I am doing until the pain meds no longer help at all.

I hope they find a treatment for you soon and you get to feeling better. (((Gentle Hugs)))
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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Date Joined Jan 2007
Total Posts : 3200
   Posted 6/19/2008 5:59 PM (GMT -6)   
Ides, I'm so sorry to hear your latest Dx. I did get drug induced lupus with Remi, but my ANA went back to normal after
coming off it. I know for a short time there I felt pretty awful, so I can imagine what you're going through right now.

I wish you a quick remission, and one that will perhaps last a good while....

My thoughts are with you, take care!!

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts

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Date Joined Mar 2007
Total Posts : 4527
   Posted 6/19/2008 8:04 PM (GMT -6)   
Hi Ides Just want you to know I often wonder how your doing. What your going through we don't really know but hope things will get better for you. It makes things harder for a person with crohn's when we know the meds can cause so many hardships and discomfort. Keep in touch and will be thinking of you and hoping things get better. lol gail

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Date Joined Sep 2005
Total Posts : 517
   Posted 6/19/2008 8:37 PM (GMT -6)   
sorry to hear this. may i ask how long you took the remicade. I recall this is a medication administered through IV. Can i suggest that a simple IV of antibiotics as another choice, although i had 3 or 4 Ivs of remicade. I would even ask for a IV without meds, now. If they can provide remicade they should permit a basic IV just to get hydrated.

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Date Joined May 2007
Total Posts : 1488
   Posted 6/19/2008 8:50 PM (GMT -6)   
Ides-I'm sorry so sorry about your new dx. It's like having to let another piece of yourself go and starting all over learning to control all the symptoms isn't it. I was recently dx'd with Fibromyalgia, osteoarthritis and osteoporous. At least I know where all the pain and stiffness was coming from now.
I think mine was prednisone induced. I second your thoughts about "new" or "worsening" symptoms.
The increase in fatigue & pain prodded me to keep whining enough to get my doctors to follow through.
I'm glad I did too. Please try to get plenty of rest and know we are here for you as you adjust to this new dx. -Gayle
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Glucosamine, Multi-Vitamin, Ultracet Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, peri-menopausal.

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Date Joined Jan 2003
Total Posts : 6044
   Posted 6/19/2008 10:23 PM (GMT -6)   
dang ides... it pours dont it? we could both use just a sprinkle now and then!

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Date Joined Mar 2007
Total Posts : 900
   Posted 6/20/2008 1:20 AM (GMT -6)   
Ides, I'm so sorry about this new DX.... Life just isn't fair. !
I am keeping you in my thoughts and prayers.
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis

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Date Joined May 2005
Total Posts : 511
   Posted 6/20/2008 2:01 AM (GMT -6)   
Ides- I'm really sorry you have to go through all this!!! Prayers on the way!!
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 30mg tapering
                           Methotrexate injection 12wks
                           Folic Acid
No Surgeries

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 6/21/2008 11:21 AM (GMT -6)   
Well Ides (that is a bummer), welcome to the Remicade induced (which was not suppose to be permanent) Lupus crohnie club.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...

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