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Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Drug Induced Lupus from Remicade...Now Stelara?


04-24-2017, 10:46 AM   #1
Theresa56
 
Join Date: Feb 2013
Location: Augusta, West Virginia

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Drug Induced Lupus from Remicade...Now Stelara?

Hello Everyone ~ I am looking for some advice. I had been on Remicade for over 2 years and started having joint pain. Not too terrible, but Gastro recommended seeing a Rheumatologist. An ANA-Titer 12 Panel was drawn and came back 1:1260 positive for SLE. Previous ANAs had been negative. This was in Sept. 2016. The last eight months have been unexplainable. I have never experienced anything like Drug Induced SLE. You never know from day to day what to expect. The fatigue is unexplainable and the body pain is debilitating. I am currently on Plaquenil, but had to titrate up slowly since I am sensitive to medications. My Crohn's/Colitis was stable for the most part since the discontinuation of Remicade, but seems to be making an appearance. My physicians have suggested Stelara, since it has recently been approved for Lupus treatment also. My concern...I am frightened to try another Biologic, but I also know that I can't continue living on hope that tomorrow will be better. Has anyone switched from Remcade to Stelara? Or could someone who takes Stelara just enlighten me on their experience? I am still currently active with SLE but my last ANA titer, my antibodies had come down. I need to make a decision and move forward, but FEAR has me grounded. Thank You for any answers and Blessings to all who endure our path.

Also, I am 61 years old. Is there anyone in this age bracket that has just begun treatment with Stelara?

Last edited by Theresa56; 04-24-2017 at 03:33 PM.
04-26-2017, 11:49 AM   #2
Bufford
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I am close to your age, and I understand your feeling. My Crohn's has been fairly steady, not really that active, but it lets me know that its there. I tried Remicade last year, and came down with lupus like side effects and had to go off of it after the 3rd infusion. The experience has left me too scared to try anymore of those biologics. I have had good results simply using diet, stress control and natural aproaches such as Tumeric and am doing quite well.
At our age we should not be facing stress. After all what do we have to be concerned at this point in life, I have lost just about everything and am in retirement. I have nothing to fear anymore, raising my confidence to levels I never had when I was younger.
04-26-2017, 02:03 PM   #3
Theresa56
 
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Thank You so much for replying!! I will say the Remicade was wonderful while I was on it for the first two years. But, the symptoms of lupus came on suddenly, and before I had time to mentally deal with it, I was hit so hard physically that I am still recovering. I have never had anything so debilitating. I do not have the typical Crohn's/colitis with diarrhea; mine is more extra intestinal
manifestations with spondyloarthropathy, knee, ankle, and joint pain with inflammation. Also, cervical degeneration, and I have had back surgery for spondylolisthesis. I had uveitis when I was in my 40s. I was hoping the Remicade had knocked the IBD out for good, but I also have a terrible time with the ileocecal valve. My stomach is very sensitive and I have tried tumeric in the past, but may try again. I have already lost the past eight months trying to recuperate from the lupus. I am making progress, but I feel as if I have lost so much valuable time. My son was home from England for Christmas, and I was so sick, his visit is just a vague blur. Plaquenil is helping but just not fast enough, although I know it normally takes six months to reach full benefits. I feel at my age, I am scared to try again. If I were younger, I still don't know if I would risk it. I feel like either path I choose, it will be the wrong one. I have tried methotrexate...failed that, did pretty good with Canasa suppositories but just wasn't enough, and have tried Pentasa. I have an appt. tomorrow and will discuss some of the older options vs. the Biologics. I am happy to hear that you are doing well!! So true, we do not need the stress...and lets be honest, trying to make decisions like this are stressful!! I do hope you will continue to do well and keep things under control. Do you mind if I ask what type of diet you are currently following?
04-26-2017, 02:41 PM   #4
ronroush7
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I was on Remicade for a while but made the mistake of taking myself off because of expense. They tried to put me back on it a few months after surgery but by that time my body had a reaction to Remicade. Everyone is different how they react to medicine. The next biologic they tried me on was Stelara and it didn't do much for me.
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
04-26-2017, 03:38 PM   #5
Maya142
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I do not have the typical Crohn's/colitis with diarrhea; mine is more extra intestinal
manifestations with spondyloarthropathy, knee, ankle, and joint pain with inflammation
If joint inflammation is a big problem, Methotrexate might be an option to re-try. It should work for both your Crohn's and arthritis. Something like 6MP or Imuran generally would not work for spondyloarthritis.

My kiddo also developed drug induced Lupus for Entyvio. She has been miserable with it - lots of joint pain and fatigue. But biologics work well for her Crohn's, so we will be trying either Stelara or Cimzia next. Her rheumatologist told us the Lupus symptoms usually go away within 3-6 months (which is a VERY long time when you're miserable).

She also has spondyloarthritis (Ankylosing Spondylitis) and to prevent further damage to her joints, it's very important that she is on a biologic.

My husband also has AS and has plenty of damage - 5 hip replacements, a fused ankle, fused SI joints and a partially fused spine. He has never been on biologics because they weren't available when he was diagnosed. My daughter does have some hip, SI joint and knee damage but nothing like my husband. We would like to keep it that way!

I guess I'm just saying that while biologics can cause big problems, they also do a lot of good. I wouldn't completely rule them out.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-28-2017, 10:53 AM   #6
Bufford
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Join Date: Dec 2015
Location: Northwestern Ontario

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Thank You so much for replying!! I will say the Remicade was wonderful while I was on it for the first two years. But, the symptoms of lupus came on suddenly, and before I had time to mentally deal with it, I was hit so hard physically that I am still recovering. I have never had anything so debilitating. I do not have the typical Crohn's/colitis with diarrhea; mine is more extra intestinal
manifestations with spondyloarthropathy, knee, ankle, and joint pain with inflammation. Also, cervical degeneration, and I have had back surgery for spondylolisthesis. I had uveitis when I was in my 40s. I was hoping the Remicade had knocked the IBD out for good, but I also have a terrible time with the ileocecal valve. My stomach is very sensitive and I have tried tumeric in the past, but may try again. I have already lost the past eight months trying to recuperate from the lupus. I am making progress, but I feel as if I have lost so much valuable time. My son was home from England for Christmas, and I was so sick, his visit is just a vague blur. Plaquenil is helping but just not fast enough, although I know it normally takes six months to reach full benefits. I feel at my age, I am scared to try again. If I were younger, I still don't know if I would risk it. I feel like either path I choose, it will be the wrong one. I have tried methotrexate...failed that, did pretty good with Canasa suppositories but just wasn't enough, and have tried Pentasa. I have an appt. tomorrow and will discuss some of the older options vs. the Biologics. I am happy to hear that you are doing well!! So true, we do not need the stress...and lets be honest, trying to make decisions like this are stressful!! I do hope you will continue to do well and keep things under control. Do you mind if I ask what type of diet you are currently following?
Its a delicate balancing act, yesterday was tough; my joints and my neck were really bad and I was constipated. Today, I woke up rested, and I had good bowel movements and have energy today.

My diet is pretty basic and boring. Everyday I have one soft boiled egg for breakfast with one piece of toast and all ways put honey on, and a banana afterwards. Honey has noninflammatory effects. I can drink tea or coffee in moderation. Mid morning I take a level teaspoon of Tumeric and mix it into a glass of cold water. Drink it on an empty stomach in the morning between breakfast and lunch on an empty stomach. Avoid taking it later in the day or it may interrupt sleep.
Lunch is small, some lunch meat, perhaps a slice of hard cheese and a piece of fruit. Apples give me trouble unless they are soft.
I eat supper around 5pm. Usually chicken or fish. I like baked chicken the best, some skin is allowed but I chew it well. Some boiled carrots, no sweets for desert. I can get away with making meatloaf, I can tolerate beef but it must be ground.
Late at night I often make a small egg salad sandwich, and a little bit of ice cream. Or sometimes toast with honey. Honey all by itself on a spoon is nice and helps induce sleep.

I had to give up my sweet tooth and eat sweets in small amounts. Yogurt is a good alternative to sugary snacks. I also had to give up salads. I used to love making tossed salads but they cause cramps gas, irritates my strictures causing constipation. No nuts or rich foods. My diet has become very boring, but I easily avoid those trigger foods for the fear of the pain they can induce.
I hope this will be of help for you. Its tough to find out what does and doesn't work.

Last edited by Bufford; 04-29-2017 at 10:42 AM.
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