Wait, so you're telling me that @realDonaldTrump can get hydroxychloroquine (plaquenil) because he "feels" it will help him while, meanwhile, SLE patients like me were told to RATION our prescriptions because of the shortage that he induced?? #lupus

To those autoimmune patients (SLE, RA, Lyme, Sjögren’s, and the rest of us) who are in the same struggle- thank you for your support and for your stories. I still have limited hydroxychloroquine (my refills were cut from a 3-month supply to a 1-month supply) 1/14

I did not lie about having to ration my hydroxychloroquine (HCQ) dosage. Typically, I take 150mg. I was told by my rheumatologist to reduce to 100mg per day and, if I was not in a flare, to do 100mg every other day. 2/14

I have been prescribed HCQ for 6 years. I also am on prednisone and benlysta because I have been in a flare since last year; I additionally take gabapentin and nortriptyline for my fibromyalgia. Each medication plays an important role 3/14

The reason for my tweet was to draw attention to those that are prescribed HQC. It is an extremely effective anti-malarial drug and has been shown to help in autoimmune diseases. There are side effects (my first month was rough), but it has helped me live 4/14

The mechanism of how it works in autoimmune diseases is not fully understood but there have been numerous scientific and clinical studies demonstrating that it does help and that, importantly, it is safe at specified doses. 5/14

The dosage of HCQ is drastically higher for Covid-19 patients. Famously, “the dose determines the poison”, which underlines the concern for HCQ adverse effects in Covid-19 patients. They get a large dose over a short amount of time. 6/14

Conversely, I take a smaller (in comparison) dose over a long period of time. The side effects are thereby different due to these doses. Clinical trials are necessary to determine if a drug is 1) safe and 2) effective. 7/14

There are multiple HCQ Covid-19 clinical trials being conducted right now (some with or without azithromycin and/or zinc). These will help us make informed and educated decisions re: HCQ and Covid-19 8/14

I am a scientist and currently and working on a Ph.D. in the Biomedical Sciences. I follow the scientific studies and do hope that we find some therapy that works. Is it HCQ? I am unsure about this given the data in primary literature. 9/14

If HCQ does work, then we need to be guaranteed access to both autoimmune and Covid-19 patients. No trading lives. There would need to be safeguards that ensure access to medication for both prescriptions 10/14

All this to say: I need HCQ to live and there's still a shortage (not just in the USA either). Regardless if there is increased production, I have yet to personally see it. This does NOT discount those who have access to their normal prescriptions, this is my own experience 11/14

Those who have autoimmune diseases are part of the invisible illness group. That is how I feel we are also perceived by society. You don’t hear much about HCQ shortages in the news in regards to autoimmune patients, just the news about Covid-19 12/14

That is why Trump’s statement on his personal HCQ made me upset and angry. There are thousands of lupus patients alone that take this drug and still have to ration (or worse- can’t even refill their prescription). But here he gets the drug because he’d “like to take it” 13/14

We suffer in silence because we “don’t look sick”. But each day is a battle. And it’s disheartening to see that this is yet another battle we may have to face. Also, happy #lupusawarenessmonth 14/14

Adding this here too: Oops I put the wrong dosage! I was on 300mg and then was told to taper to 200mg/day and then 200 mg every other day if I wasn’t in a flare. Forgot the dosage/tablet was 200mg, not 100mg