Six Years Ago I was suffering. It began in February, every joint in my body was swollen. I could not close my hands because my fingers were so big; they looked like hot dogs. At night, as I lay in bed, it felt as though my hands were on fire; as a result I spent most nights on the couch with two pillows on my lap leaning forward hoping I would fall asleep before the alarm went off the next morning. My feet were swollen; wearing shoes was uncomfortable. I was teaching at the time so I was on my feet eight to ten hours a day. I took photos to send to my daughters to see what they thought I was suffering from. After seeing four medical professionals, (beginning in March & a diagnosis in June), in different avenues of health: orthopedic surgeon (they thought I needed neck surgery), a neurosurgeon (no surgery would not fix the swelling), a neurologist (no, it is not a neurological disorder), finally to be sent to a rheumatoid specialist who took one look at me; after gently shaking my hand in greeting and stated, "you have Seronegative RA." (rheumatoid arthritis). In Seronegative cases the patient does not possess the antibodies of a seropositive RA patient but has the symptoms.
Now that I had a diagnosis and after doing research I now knew what was happening to my body; though we still don't know what might have triggered it. With the help of my RA doctor we could begin a treatment.
The treatment was one of trial and error. In order to sleep at night I was prescribed Oxycodone. I didn't like the idea of taking a narcotic so I didn't take it unless I had to. I began with nine day tapers of Prednisone. For those of you who have taken this drug you know the side effects can be numerous, but it is a drug that has been beneficial for those suffering from RA. It's purpose was to bring down the swelling in my body. In addition to this drug I began a regiment of Hydroxychloroquine and Methotrexate. One for treating Malaria and the later a drug for the treatment of some cancers. I called it the "cocktail," and hoped that this combination would help my body. Well, the "nine day tapers," turned into taking Prednisone for over four months; every time I went off my body would swell back up. But, it seemed that this combination was reducing the symptoms of RA.
Eventually, we could eliminate the Prednisone because the other two drugs, in combination, seemed to help. We had to "play" with the strength of the doses; again trial and error was my life. Every time I filled my prescriptions I would look at the list of side effects, which seemed like longer than my arm, and would wonder if these effects were worth the feeling of normalcy. They must have been because I was on them for almost three years. I guess I was one of the fortunate ones as the side effects that could have come to pass were minimal. But, I couldn't get past the idea that I was putting my long term health on the line. And so, after three years of feeling better I had a conversation with my doctor and I stated that I did not want to take these drugs any more; that their side effects were to worrisome. Of course, you know what his response was, "well, when you get all swollen, don't come crying back to me." I slowly weaned myself off of both. Yes, there were instances where I had to go back on them, but I was determined.
Now, six years later I am relatively free of all three medications, though I am currently taking a nine day taper of Prednisone. I hope that I never have to go back on Hydroxychloroquine or Methotrexate again. I have researched a more homeopathic way of dealing with RA.
So, when I read about people taking a drug; who may not need to I am frustrated. When I listen to stories of people suffering from RA or Lupus who can not get their prescription of Hydroxychloroquine filled because pharmacies can not get the drug due to the demand of those who think that this is a cure all for Covid-19 I am frustrated. Studies have shown that Hydroxychloroquine is not a preventive for Covid-19. A recent study conducted in the Veterans Affairs Health Administration medical centers discovered that, " that two primary outcomes for COVID-19 patients treated with hydroxychloroquine were death and the need for mechanical ventilation." (New England Journal of Medicine) Though the study has not been peer reviewed, "the findings "can accelerate our understanding of the outcomes of these drugs in COVID-19 while we await the results of the ongoing prospective trials," the authors said."
I am sharing what was a very difficult time in my life. This event will forever be with me. I continue to wonder if I will be forever impacted by the side effects of the drugs I took; and in some cases still take for RA. This view point is my own; as this story is my own.
Side Effects of Hydroxychloroquine
Nausea, vomiting, loss of appetite, diarrhea, dizziness, or headache may occur. If any of these effects last or get worse, tell your doctor or pharmacist promptly.
Tell your doctor right away if you have any serious side effects, including: slow heartbeat, symptoms of heart failure (such as shortness of breath, swelling ankles/feet, unusual tiredness, unusual/sudden weight gain), mental/mood changes (such as anxiety, depression, rare thoughts of suicide, hallucinations), hearing changes (such as ringing in the ears, hearing loss), easy bruising/bleeding, signs of infection (such as sore throat that doesn't go away, fever), signs of liver disease (such as severe stomach/abdominal pain, yellowing eyes/skin, dark urine), muscle weakness, unwanted/uncontrolled movements (including tongue/face twitching), hair loss, hair/skin color changes.
This medication may cause low blood sugar (hypoglycemia). Tell your doctor right away if you develop symptoms of low blood sugar, such as sudden sweating, shaking, hunger, blurred vision, dizziness, or tingling hands/feet. If you have diabetes, be sure to check your blood sugars regularly. Your doctor may need to adjust your diabetes medication.
Get medical help right away if you have any very serious side effects, including: severe dizziness, fainting, fast/irregular heartbeat, seizures.
This medication may cause serious eye/vision problems. The risk for these side effects is increased with long-term use of this medication and with taking this medication in high doses. Get medical help right away if you have any symptoms of serious eye problems, including: sensitivity to light, vision changes (such as light flashes/streaks, blurred vision, difficulty reading, missing areas of vision).
A very serious allergic reaction to this drug is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), dizziness, trouble breathing.
This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.
Articles on the Veterans Study on the use of hydroxychloroquine
