Lupus meds destroyed my teeth and jawbones – dental care should be treated like health care


In 2013, I had the first serious medical emergency of my life. I had developed a very large fibroid and needed a hysterectomy to have it removed. I also had anemia, which I thought was due to all the bleeding from the fibroid. While I was in the hospital for the hysterectomy, the doctors discovered that the anemia I was suffering from was actually caused by lupus and that I was suffering from a manifestation of the disease called autoimmune hemolytic anemia – to put it simply, my immune system was killing all my red blood cells.

By the time I was admitted my hemoglobin was below 6 meaning I needed an immediate blood transfusion as well as treatment with high doses of steroids in order to quit. my immune system and stop the destruction of my red blood cells. After dealing with an episode of pleural effusion (probably due to abdominal surgery), I was finally able to go home after about a week in the hospital.

After I got home, my doctor put me on oral prednisone to reduce the high doses of intravenous steroids I had received in the hospital. During this time I also developed a blood clot in my leg, which luckily was easily treated with medication. Doctors told me the blood clot was due to another manifestation of lupus that occurs in some people called anti-phospholipid syndrome, which causes the body to attack tissues in your body, which can lead to the formation of blood clots in veins and arteries.

Also around this time, one of my front incisors developed a crack that ran up and down and I started bleeding from the gums. Until that time, I had few dental problems such as periodontal disease or cavities. I made an appointment with a local dentist to see if I could get my tooth done and started using listerine more frequently, thinking that would solve the problem.

After I was done with the steroids and many other medications they prescribed me, I quickly realized that I wasn’t quite off the hook yet. About a month after I finished tapering off the prednisone, I had to be hospitalized again for hemolytic anemia, which meant I would have to have yet another blood transfusion, and more high-dose pulsed steroids.

The doctors who treated me decided that they would have to very slowly take me off the steroids in order to prevent the haemolytic anemia from coming back, hoping that after the hydroxychloriquine (yes, this medicine – the only idiot the Trumpers thought would cure Covid) that I was also taking would build up enough in my system to keep lupus under control. (This drug, by the way, is essential for people with lupus – for a while it was difficult for people who really needed it to get it because of the Covidiots.)

A few weeks after being released from the hospital, one of my molars just collapsed one day while I was eating, and the bleeding gums just kept getting worse. I asked the doctor if some of the drugs were causing this and then they finally told me yes, high doses of the steroids could cause teeth and gum problems. Unfortunately, there were no other treatments covered by my insurance (medicaid at the time) that would get me off the steroids faster. (I had another episode of hemolytic anemia a few years ago, but the insurance I had at the time covered the cost of a round of rituxan, which allowed me to stop the steroids much faster.)

By the time the year of taking oral steroids was over, a lot of damage had been done to my body by the steroids – a bone scan revealed that I had developed osteoporosis. Luckily, that went away after a while. But the damage to my teeth and jawbones was apparently a different story – over the years it got progressively worse. My two front incisors collapsed, along with four of my molars. I also have several cavities and some periodontal diseases. No amount of brushing my teeth, using listerine or caring for my mouth has done one bit of good – every time I’ve had to take more steroids to treat lupus, my dental issues get noticeably worse .

And I don’t have money to spend on lots of expensive dental work. It’s all I can do to pay for the care I need to control my lupus. I went to the dentist about a year ago, hoping that maybe I could just have my teeth pulled and get some dentures. I found out then that to get even a standard set of dentures I would probably have to have a number of bone grafts since the damage to my jawbones is so severe. I also learned that my medical insurance would not cover the cost and that even the best dental plan on the market would cover the amount would be just a drop in the ocean. We’re talking about enough money to buy a house in some rural parts of the country to fix my teeth so I can eat normally and not have pain most of the time. I currently have an abscess in one of my molars which broke below the gum line – to remove it I will have to pay between $600 and $800 in total as it will need to be surgically removed – which will have to be paid out of pocket if ever I can do it at all.

Needless to say, like many Americans with dental issues, I’m going to have to go without. How many people, even those with good jobs, can afford something like this? What really sucks is that most of my dental problems have been caused by medication – you would think that your health insurance plan would cover the cost of treating complications that arise due to drug treatments for others health problems.

This is, unfortunately, a common problem here in the United States. People with the most serious dental problems are the least likely to be able to afford the care they need due to cost. Apparently being able to eat normally and not be in pain all the time is just a cosmetic concern. How many people (myself included) have been passed over for job opportunities because of bad teeth. Many people, at least here in Kentucky, seem to assume that if you have bad teeth, you must be a drug addict. Needless to say, I try to avoid smiling too much in public or around people I don’t know too well.

I hope that once we get past all the craziness we’re facing as a country and in the world right now, we can get back to the national issues that make life better – not hinder – ordinary Americans. And I hope that when we can finally get back to working on improving our health care system, some ways to improve Americans’ access to dental care can be discussed.

Thank you for allowing me a space to rant a little while I await the arrival of Dr. Fishmox. For too many of us, it is our only option for dealing with a tooth infection.


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