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Drugs induced lupus

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Posted 6/2/2021 6:03 PM (GMT -8)
I’ve recently been diagnosed with DIL due to Humira for my arthritis. I’ve had to to stop that immediately.

Luckily I’m relatively symptom free other than bloodwork. Just a few symptoms but my doctor doesn’t want to risk keeping me on it and developing other issues.

So just a few questions...

1) How a few how quickly, in your experience, does my blood work go back to normal?

2) Should I be doing anything different with COVID like double masking or limiting where I go out in public? I was vaccinated in May and here I was thinking great- I’m off the Humira, no longer considered in that immunocompromised category so maybe I can just do one mask now that I’m vaccinated. My husband is now worried thinking maybe we should rethink our family trip to the zoo in two weeks.

3) Is there anything else I should be doing? I mean I feel relatively fine so I feel like I should just go about my business. But, I don’t want to miss something (shrugs). Maybe bc my mindset is bc this is temporary or bc I’m feeling ok now?

Thanks in advance for your replies. Stay well.
Posted 6/7/2021 8:05 AM (GMT -8)
I think you would feel more comfortable getting an answer from your own doctor.

Sharon
Posted 9/27/2021 6:12 PM (GMT -8)
I think all good questions. I was just diagnosed with this. Has been a long haul. I also think advice form others on here is great. Doctors are not always the best advice givers.
Posted 10/25/2021 11:51 PM (GMT -8)
These are all probably best to address with your doctor - so this isn't medical advice - but my understanding is that rate of improvement depends on the individual (but is often a several month process). Double-masking isn't a bad idea for anyone, but the reality is that Arthritis is your only issue, a lot of the current literature hasn't found Humira alone to increase risks associated with Covid.
Posted 8/24/2022 11:12 AM (GMT -8)
I cant tell you what to do after getting vaxed but this girl I follow who was injured by it said her doctors think she had underlying lupus and the vax may have made it symptomatic.

https://www.youtube.com/watch?v=khoED54dzmQ

I've heard someone cure Lupus in 3 weeks with hydrogen (Browns Gas inhalation) but they werent vaxxed so Im not sure how you respond.
Posted 8/24/2022 12:03 PM (GMT -8)
The Covid vaccinations are not known to affect Systemic Lupus. I've had 2 vaccines and 2 boosters with no issues at all. I would much rather risk issues from the vaccine than issues from Covid -- my greatest fear is that even a mild case of Covid will set off a major Lupus flare that will be impossible to recover from. Thus despite all the vaccines, my partner and I are masking when in enclosed places with people nearby... and not eating inside restaurants.

If your Drug Induced Lupus has been declared 'gone' or 'cured', then you are cleared from having to do extra Covid precautions because of it. If you are taking Humaria, you probably still need to take extra precautions.

Systemic Lupus is not "curable" from anything, even hydrogen. I urge those of you that are NOT lupus patients to refrain from posting on this Lupus board. It is not helpful to those struggling to understand what is happening to them from Lupus. Thanks.
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