Double stranded and drug induced lupus- Remicade patient, constant pain, help

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jayce
Regular Member


Date Joined Nov 2007
Total Posts : 401
   Posted 8/29/2018 7:23 AM (GMT -6)   
Hi,
I'm usually on the ulcerative colitis board.
My daughter has had UC for about 10 years. She was on Remicade doing very well for the las 5 years, and then suddenly developed pain.
The pain began in her muscles and moved into her hands and feet, her skin has a burning feeling. Her pain was debilitating for the first 2 months. It now has calmed to a 4 out of 10 most days..

The gastro discontinued all meds for UC while she is symptom free, and sent her to a rheumatologist.
He put her on steroids for the pain, very high doses oral and IV and nothing helped the pain.
He just told he her to get another opinion because the steroids should have helped the pain, he believes there is something else causing it and that the lupus is a secondary finding.
She can't take regular meds for lupus because of her ulcerative colitis.
Only he's sending her to another rheumatologist. I don't think this is where to go next. He's the head of a department in a prominent hospital, seeing someone else in the same hospital same department doesn't sound promising..

Wonder if this has happened to anyone here, and what could be the underlying cause of the pain if not lupus.
She would like to go to a hemotologist oncologist , but the rheumatologist does not agree.
But he also has no other ideas.


Thanks

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 8/29/2018 11:06 AM (GMT -6)   
Hi Jayce, I can tell you my experience with Remicade induced Lupus. I have both crohns & UC. I was on Remicade for 3 1/2 years. The last 6-9 months on it I developed horrible joint pain. This pain was completely different from my normal joint pain. The Remicade became less effective because I had developed antibodies to it. I saw a rheumatologist who confirmed the diagnosis. He put me on Plaquenil for the Lupus & my gi put me on Humira. I stayed on Humira & Plaquenil for about a year & a half. This all worked fine until I started having other issues & had to stop the Humira. It takes Remicade a good 6 months to get completely out of the system.

If your daughter does have drug induced Lupus, I am not sure why they don't want to put her Plaquenil. Does she know what medication will be considered for her UC? Not being on anything for maintenance can be a little sketchy. TNF blockers will keep Lupus in the picture. Perhaps Enytvio is something that can be considered as it appears to be having a good track record.

It gets frustrating when medication eliminates one problem but creates another. I would consider seeing the next rheumatologist for a one time consult at least. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

caia_120
Regular Member


Date Joined Dec 2013
Total Posts : 108
   Posted 8/29/2018 11:38 AM (GMT -6)   
I'm a crohn's patient also and I was recently diagnosed with drug induced lupus from Humira. I think getting a second opinion even within the same group is a good idea, some doctors focus on certain conditions within their specialty and perhaps her original Rheumatologist doesn't focus on Lupus as much as other rheumatologic disorders. I agree with straydog about the Plaquenil, I would ask the second opinion about it. If she does not take a maintenance medicine for her UC there is a risk of a flare, so pay attention for any symptoms of UC rearing it's ugly head. I hope your daughter gets answers soon, it took several doctors and about 2 years to get my diagnosis.

jayce
Regular Member


Date Joined Nov 2007
Total Posts : 401
   Posted 8/30/2018 7:16 AM (GMT -6)   
Thank you both. The rheumatologist said the plaquenil would hurt her stomach,.
So he used the steroids. That was stopped after a couple of weeks when they didn't help.

The gastro said to take a holiday from all maintenance meds including the remicade and Apriso because her colon looked good at the time, that was April , and I thinks she is planning to put her on Entyvio next , but she is waiting until this is resolved and basically said see you when this is better. I guess she wouldn't start giving the entyvio unless she begins to flare.
I don't like waiting with nothing because we know how fast a flare can progress.

My daughter wants to go to the Mayo Clinic, but I don't know who to request to see there, or if it's the right place if we are going somewhere for an evaluation.

I feel helpless. She will see the next rheumatologist, but there's a couple of weeks wait and I am worried about a flare.

I thought that because remicade has been around for a long time, the drs. Would know more about this. It seems that I have been reading about more patients getting having this problem. I didn't hear about it in the first 5 years of her treatment, but several times on the UC board the last couple of years..
But those people seem to stop writing..

Thanks again for your advise.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16804
   Posted 8/30/2018 10:05 AM (GMT -6)   
Jayce, Remicade has the long track record for long term use. It sounds like the rheummie has not bothered to communicate with her gi. The Plaqquenil will not hurt her stomach, have no idea where that came from, or why he said that. Not everyone on Remicade gets this situation at all. This was 10 years ago when it happened to me. My rheummie suspected it was the Remicade all along, just had to do testing to be positive.

I suspect your daughter's UC was moderate to severe since she was put on Remicade. A dr taking a patient off of all meds, too risky. She may want to consider getting a 2nd opinion with another gi.

You can call the Mayo Clinic & ask what their protocol is to be seen there. If a referral is needed, her GP can handle this.
Susie
Moderator in Chronic Pain & Psoriasis Forums

jayce
Regular Member


Date Joined Nov 2007
Total Posts : 401
   Posted 8/30/2018 10:26 PM (GMT -6)   
I think they manage an email when we've shown up back at the rheumatologist, but it may not say much.

I know what you're saying, we are concerned about another treatment getting started. She needs to go back to the gastro and get an understanding of what she wants to do next, and when and check inflammation again, last time was April. Something needs to get stared.

I think I need a more up to date rheumatologist..

Thank you

GreenBeans
Regular Member


Date Joined Dec 2016
Total Posts : 46
   Posted 8/31/2018 3:34 PM (GMT -6)   
To find a rheumy that is well-versed in Lupus, I suggest the following:

Check with the Lupus Org at www.lupus.org to find your local chapter of the organization. Then check in with the local chapter to see which local Drs are active on the advisory board -- these are generally the Drs most interested in and most experienced with Lupus in your area.

Best wishes.

jayce
Regular Member


Date Joined Nov 2007
Total Posts : 401
   Posted 9/1/2018 6:10 AM (GMT -6)   
Thank you GreenBeans. I will do that.
Mom to 29 year old daughter diagnosed 11/07 at 19
apriso 3 pills 3x's day, 6/14 4 PILLS 1X DAILY
purinethol 6mp=25mg daily,5/14 EVERY OTHER DAY
chewable vitamin

remicade (started 2/2011) stopped after second infusion-started cimzia- back on remicade stopped in august/2012-remission acheived.
1/14 flare, Simponi 3/14,simponi stopped after 3rd dose no change. Reinduction Remicade 6/19 methotrexa

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 2152
   Posted 9/2/2018 10:13 AM (GMT -6)   
I am taking Humira for ulcerative colitis and Plaquenil for Lupus.

I worry that you are getting seriously bad advice. Your daughter needs to be on Plaquenil and that should help with the pain...it won't hurt her stomach.

Also, going off Meds when she has UC is another seriously bad idea.

You need to speak with other people that know their stuff.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 893
   Posted 9/17/2018 2:07 PM (GMT -6)   
I just popped in for a minute, as i normally post on the pain forum.

As a point of reference, anyone who has been on long-term or high dose corticosteroids with new symptoms of diffuse joint/muscle pain, unrelenting fatigue, low appetite, and general malaise should be aware of steroid induced secondary adrenal insufficiency as a possible differential diagnosis.

Corticosteroids suppress the Pituitary gland and HPA axis (hypothalamus-Pituitary-adrenal gland interrelationships). Secondary adrenal insufficiency is not on the radar of most physicians and can escape detection. This is a serious, debilitating, and life affecting condition. Even endocrinologists are challenged by this condition.

Anyone who has been prescribed corticosteroids for Lupus or UC or other auto immune disorder should become aware of secondary adrenal insufficoency and propose baseline testing.

I have both primary adrenal insufficiency (Addison’s) and secondary adrenal insufficiency. I was mis-diagnosed for 2-3 years, my health languishing. An acute Addisonian crisis provided the window of opportunity for a proper diagnosis - and a week’s ICU stay. Unfortunately, most people with adrenal insufficiency will shuffle from physician to physician for months/years before an accurate diagnosis is made, many individuals wrongly dismissed and invalidated, and told that symptoms are “all in your head.”

Become aware of secondary adrenal insufficiency. Pose the possibility to your physician. Ask for baseline blood work (morning cortisol and ACTH level) and an ACTH stimulation challenge testing. Do NOT assume that your physician has an awareness of corticosteroid induced HPA axis suppression.

My life has been forever changed by improper medical “care.” The only sense I can make of my redirected life is to provide wisdom and guidance to others in gaining knowledge about Addison’s disease/adrenal insufficiency. To spare someone the medical odyssey that is mine.
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Post Edited ((Seashell)) : 9/17/2018 1:13:10 PM (GMT-6)

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