What you are about to read is my story and journey of taking the well know Hydroxychloroiquine (Plaquenil), this is a drug which is used to treat lupus, arthritis, and it is better known as an antimalarial agent. Before I get into my journey, has your Rheumatologist ever sat down with you to discuss the side effects of this drug?, Have you or did you ever ask about the side effects of this drug? I know, I can hear you stating all drugs have side effects, and your right, But have you ever ask?
I asked all the right questions, but I was in tremendous amount of pain, pain that is indescribable, so it was my choice to go ahead with this treatment. Yes, I knew what I was up against, I just wanted the pain, fatigue and everything else that goes on with SLE to stop. Now did you know that hydroxychloroiquine may cause side effects such as: headache, dizziness, loss of appetite, nausea, diarrhea, stomach pain, vomiting, rash, difficulty reading or seeing, sensitivity to light, blurred vision, changes in vision seeing light flashes or streaks, difficulty hearing, ringing in ears, muscle weakness, unusual bleeding or bruising, bleaching or loss of hair, now this list goes on, and on.
You've all heard my story, when I was finally diagnosed in 2004 I was immediately placed on this medication, followed all the guidelines which were set in place which included routine eye exams. Well in 2015 I had a follow-up appointment with my rheumatologist, on this appointment while the doctor and I went over the lab results she stated "Susan you are going to have to come off of the Plaquenil it's causing your body more harm than good, and we can try the chemo." I was on this medication for 11 years, I begun to have problems with my eye sight, the ophthalmologist diagnosed it as Retinal Toxicity, so now I go every 3-4 months. And by the way if your wondering, I did not try the chemo, I've been off of lupus medications for 11 years now.
Now this video shows what I go through when seen by the ophthalmologist. Is this uncomfortable? No, it's not, numbing drops are placed on the eyes before the probe (what I call it) is placed on the eye. How is my vision now? All I can say it's not good, but I thank God for the ability of seeing. I may not have 20/20 vision but I can see, and that is a Blessing. I can see in the day time, but when night time falls, I can't drive due to night blindness. But regardless of the situation there still exists a Blessing. I choose to take my health adversities and turn them around to do good, I never allow the situation to control me, I control the situation.
It is so important not only for individuals with Lupus, but for everyone to get your eyes checked on a regular basis. This is just a small part that I go through on my visits. I don't want you to feel sorry for me, this is just a part of life. I have been dealt a hand of cards and I plan on playing my hand to the end.