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

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.

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.

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

Thank you GreenBeans. I will do that.

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

Jayce, I have no idea why the rheumatologist put your daughter on Cymbalta. Cymbalta is an antidepressant, it is used off label to treat neuropathic/nerve pain & some other things. I have never heard of a dr prescribing it for drug induced Lupus.

I am still shocked that your daughter's gi has taken her off of her UC meds. That is like waiting on a ticking time bomb to go off. Worst of all is the risk of inflammation sitting there & suddenly she gets slammed. Then she has to go through the process of being sick & waiting on the medications to kick in. That's like playing a game of Russian roulette & one I would not participate in. She should be on maintenance meds to prevent this from happening.

Maybe your daughter should consider a consult at the Mayo. It appears at this point, the right hand does not know what the left is doing. She deserves better care than this. I know the decision is hers to make but I see too many red flags with these drs. Placquinel will not bother her UC!