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Hello,
It has now been multiple years without symptoms! Until I got covid last august. I was sick for months with extremely high liver enzymes. This lead to more test and a diagnosis of prescription induced lupus.
I have been off mino for 8 weeks and bloodwork returned to almost normal within that time. I restarted LDN, 2.5 prednisone. When I went off the mino.I want to start a pulsed dose of doxy or erythromycin. I am unsure which one to start and what type is least likely to cause liver injuries. I also do not know how much of either is considered a pulsed dose. Obviously, wanting lower as only small minor symptoms are prevalent.
No rf factor!!! First time since 2012 it is normal but went down every year on mino.
I have positive ana still and test or more detailed now. It looks like cell shape ana indicate scleroderma not ra. Symptoms were ra back when I had them, but dont have any currently other than minor stiffness at bed time occasionally.
Has anyone had prescription induced lupus/liver issues and tried another script with success?
What are the dosage recommended for other drugs at a pulses does.
What brands and forms of these scripts work best?
Hi NoRAsomeday,
Sounds like you reached your “some day,” which must have been wonderful, but very sorry to hear about your DILE.
Can you share a bit more about how your DILE was diagnosed? Also, were any labs run to check for DIH (drug-induced hepatitis), such as anti-SM antibodies? Or did your doc believe your liver enzymes might be related to your run-in with Covid?
I experienced DILE about 14 years ago, as well, and there are specific labs that narrowed down the field. So it would be interesting to hear which labs confirmed your diagnosis.
In regards to your positive ANA, are you able to share the actual ANA pattern and titer? My understanding is that DILE usually presents with a homogenous pattern (when it was previously negative).
I was watching a physician Covid Grand Rounds conference at Stanford earlier in the pandemic and they were noting that the infection was triggering SD autoantibodies in some patients and relevance of the autoantibodies and prognosis at that stage was unclear. In other words, the specialists discussing the topic were unsure at that stage whether the autoantibodies were merely a post-infection reactive state and whether or not they’d clear over time or if Covid was triggering autoimmunity.
It would be ideal if you had clarity on where these questions stand so you can then discuss how to proceed with AP with your treating doc. If this helps, I visited an immunologist/allergist who ran a battery of tests and who was able to definitively confirm DILE. Both my doc and I wanted to know for sure if mino needed to be conclusively ruled out as I had done so well with it, as well. It was a big disappointment to have it confirmed but quite important and I was also told that due to this reaction, I’d need to be aware of all the other meds that might cause DILE just in case I should ever need to take them during my lifetime.
Although the cause of DILE isn’t fully known, one theory is that some individuals may have what is called “slow-acetylation,” resulting in reduced ability to break down certain meds and they build up to toxic levels resulting in errant immune complexes.
As regards what I switched to at that time, I tried doxy but never did as well as on mino. I then switched to a combo of generic tetracycline and biaxin and did better.
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