Hydroxychloroquine, Lupus, and Covid
** this is my full disclaimer that this blog post is my PERSONAL opinion and experience, and not my opinion as a professional, or doctor. I am fully taking off my “doctor” hat to give you the perspective that I have as a patient. Any questions regarding covid or medical advice should be directed towards your physician, or family care practitioner. If you are experiencing any flu like symptoms related , please seek medical care, immediately.
This is honestly a topic that is super difficult for me to write on, or speak about. I have been feeling somewhat down the last few days, and a post like this could either be a cathartic or detrimental experience for someone like me…
I finally brought myself to write about this topic, because I have had so may questions coming in from friends & family… & figured that regardless of how this makes me feel… if I could explain and help people understand things from a patient’s point of view, then it would be worth whatever feelings I’m left with to process.
So.. I’ve written a few posts about SLE, and what my diagnosis and treatment therapy has consisted of.
Briefly (a history)--- before we get into the hydroxychloroquinene hype…
Lupus is an autoimmune disease where my own immune system is attacking my own healthy cells. This could be life threatening because 1) there is no cure for Lupus and 2) common organs attacked (and failures) are heart, lungs, and kidneys… As you know…at one low point my kidneys were functioning at 33%... When I was in the middle of the WORST flare up, I was told that chemotherapy would need to happen if my symptoms didn’t improve. Read my other blog posts if you’re interested in learning about that experience.
Plaquenil or Hydroxychloroquine.
SO… after searching for the right treatment modalities, diet modifications, and drug therapies to help me get back on track to seeing patients, one of the last measures after much consideration, was to start taking PLAQUENIL or hydroxychloroquine. The reason why I say LAST measure is because this is not the CURE for lupus. There is no cure for lupus, and this is a drug that I would have to take for the rest of my life… This medication when taken for lupus takes a long time to reach effectiveness. I was told by my doctor, that after 3 months of taking plaqunil, it MIGHT improve my symptoms… maybe.
Most importantly, I was reluctant to take this medications due to the potential side effects. After learning that this medication could damage my vision… I was NOT fully on board to start taking this. After much consideration, I fully and carefully weighed the risks and side effects of the medication... especially the most severe side effect, retinal damage…
As a periodontist and implant surgeon, my eyesight is everything… we live life by the millimeter!
Good eyesight is imperative.—So, I was hesitant to take a medication that could affect my eyesight and thus my passion and livelihood, but when I was so sick that working was not even feasible… I had no other alternative but to give it a try.
So after 6 months or so, my symptoms finally started to improve enough that I could return to a full time work routine.
Lupus & Viruses.
So, you need to understand a little bit about the patho physiology behind Lupus to better understand why hydroxychloroquine is being used as a treatment modalities in Covid infected patients.
One of the main theories behind the etiology of how lupus wrecks our immune system is that a past viral attack leaves our immune system confused… the previous viral attack leaves our immune system on high alert 24/7 and not understanding the difference between our own healthy cells and foreign invaders when a new attacker arrives like the common cold or flu. In my own SLE battle, this confusion started with an undetected mono infection. I was never diagnosed with mono, never felt any symptoms, never went in to the doctor for a sore throat and was found to have mono etc…BUT after lots of tests when getting lab work and diagnosing done, a mono viral infection was to blame.
The brief history behind hydroxychloroquine is that back in the day sailors used to drink tonic water in order to help protect them against malaria, and that is part of how plaquenil began to surface as a treatment modality for rheumatoid diseases. We now know (in a nutshell) that it can help bring up an acidic pH in our bodies, to a neutral pH, as well as reduce protein degradation / breakdown. NOW…I am NOT suggesting you go drink tonic water… go read the articles below on people who have OD’d after trying such measures… This too has consequences.
Potential use in Covid Positive Patients,
So.. finally, let’s talk about what everyone wants to know.. is plaquenil the cure all for COVID… the answer is NO. The prelim studies are pilot studies with FAR too few patients or “N sample size” to figure out if it’s helpful or just a coincidence. One French study shows a 6% improvement of symptom resolution, and a Chinese pilot study with a patient population of only 22 patients measured temp change and xray progression as a measure of improvement, and did not find anything statistically significant and insisted in their 6 page report said that the results were “good.”
To draw conclusions from this are minimal at best. someone who is reading these studies should learn to interprate data and form their own conclusions. For me to take these studies seriously, or for a publication to be significant… many things need to be taken into account. For example, outliers, variable factors, etc. none of these things were done in any of the studies.
Plaquenil Shortage.
So, due to unfortunate word of mouth and media publications, some of the public thought that even despite limited research, Plaquenil was a “great drug” for the fight against COVID. I’m not saying it is, I’m not saying it’s not! I’m saying we don’t have enough evidence. I want you to keep in mind that it is difficult put out good research and good data in such a short period of time, because we are in the mist of a pandemic… And until we do know more, and are certain, there are many people dealing with autoimmune or rheumatoid diseases like myself that depend on this medication for our daily function.
What is extremely frustrating, is when I hear about people taking this medication without any symptoms, any prior infections and also sadly, medical professionals prescribing this to family members. There is a shortage of the medication currently. Normally, I pick up 90 tabs refills, I take a tab and a half daily & recently.. I was running low… when I went for my Rx refill.. I was given 15 tabs. This is not only sad, but it’s upsetting. This is a medication that I depend on for my daily health and function. I’m one of very few specialists in my field, if I am unhealthy there is no way that I can properly treat my patients.
Covid & Lupus.
If I am affected by the corona virus personally, the chances that I survive the infection are slim to none. Because lupus attacks my organs, in addition to previous history of asthma and a left lung collapse…my immune system would likely be exhausted and overpowered.
SO, what I want and hope that everyone gets out of this Blog and Vlog, is that while there is a lot of talk, rumors, speculation, and facts… we are still too early into this to know what is should proof that this medication will work.
My hopes are that that everyone remains calm and steady. I hope that we continue to have faith that measures we are taking to protect ourselves will work, and I hope that we continue to remain faithful to who we are as humans beings. I believe that it is in difficult times that we can show who we really are deep inside, deep beyond all the external layers that we show in our daily routines.
Please continue to write to me, via email or Instagram and I’ll continue to answer as best as I can.
Happy Scaling,
Yvette.
https://www.lupus.org/blog/are-people-with-lupus-protected-against-covid19#
https://www.ncbi.nlm.nih.gov/pubmed/8278823
https://www.lupus.org/resources/tips-for-refilling-your-hydroxychloroquine-plaquenil-prescription
https://www.lupus.org/resources/hydroxychloroquine-plaquenil-coronavirus-covid19-questions-answers