I was given a prescription for Plaquenil in 2005 when I was first diagnosed with lupus. After researching the drug in my mother’s PDR (Physician’s Desk Reference) I chose not to take it because of one very troubling side-effect, vision damage. Since a lot of my work depends on my eyesight and since healthcare reform ain’t around the corner, I cannot depend on Social Security, government programs or anyone to assist me should I lose my eyesight and find I cannot work. Though it may help me in the short term, it could hurt me in the long term.
That said, according to a recent study released in the journal Arthritis and Rheumatism (full text PDF), the authors recommend doctors give this drug to all of their patients with lupus.
Doctors first realized decades ago that antimalarial drugs such as hydroxychloroquine could be used to treat the joint pain often seen in lupus, according to the Lupus Foundation of America. Since then, research has suggested that antimalarial therapy can help prevent flare-ups of lupus and reduce overall damage from the disease, Dr. Bernardo A. Pons-Estel, from Hospital Provincial de Rosario, Argentina, and co-researchers note.
Source: Reuters: Malaria drugs may help patients with lupus
The researchers studied nearly 1,500 patients with lupus from 9 countries. They followed them for an average of about four and a half years. The study was not “blinded” – in other words, subjects, and their doctors, knew what treatments they were getting. The results were very interesting. Twelve percent of the patients who did not use the drugs died during the follow-up period, compared to about 4 percent of those who did.
According to the Methods section of the study, the researchers state: “We used conditional logistic regression models to study the effect of antimalarial drug on the development of thrombovascular events (TE), while controlling for other variables.” The results showed:
Fifty-four cases were identified and matched to 108 controls. Univariate analyses identified age (OR, 95%CI = 1.04, 1.01-1.07) or being older than 50 years old (3.5, 1.4-8.6) and hypertension (2.5, 1.0-5.8) as being associated with an increased risk of TE while use of antimalarials (0.31, 0.13-0.71) was associated with a decreased risk of TE. Separate analyses were done for arterial and venous TE. In multivariate analysis, use of antimalarial drugs (0.32, 0.14-0.74) and age (1.04, 1.01-1.07) were the only two variables that remained significant for all TE. CONCLUSION: We demonstrate in this nested case-control study adjusting for disease severity, duration of disease and calendar cohort that antimalarial drugs are thromboprotective with a risk reduction of thrombovascular event of 68% and of at least 26% and as high as 86%.
After accounting for various factors, the team found using antimalarial drugs appeared to reduce the risk of death during the study by almost 40 percent.
This is truly interesting. I was given the impression the drug was primarily for skin lesions and perhaps some joint pain or discomfort. I was not told — or did not hear — the drugs were good for systemic conditions like inflammation of the kidneys, heart, etc. I did not know this. However, for me this study doesn’t change the side-effects caused from the drug which can be quite devastating as is the case with many of the drugs prescribed for lupus. I may have to revisit this line of thinking while considering the long term consequences of the drug, particularly to my eyes. Long term use of prednisone can be equally damaging so again, it’s six in one hand, half dozen in the other.
Hydroxychloroquine (Brand Name: Plaquenil) has its share of side effects including but not limited to irritability, headache, weakness, hair lightening or loss, stomach upset, nausea, dizziness, muscle pain, rash and itching. On rare occasions it can affect the bone marrow leading to reduced white blood cells (leukopenia) or platelets (thrombocytopenia) and abnormal red blood cells (anemia).
As I mentioned earlier, rare but potentially serious eye toxicity can occur which affects the retina and can lead to color blindness and even loss of vision. This is why my Rheumy advised I receive an exam by an ophthalmologist (eye specialist) every six months to detect changes in the retina suggesting toxicity before serious damage occurs. Regular eye examinations when taking this drug are mandatory.
Additionally, patients who are genetically deficient in a certain enzyme, called G6PD, can develop a severe anemia resulting from the rupture of red blood cells. This enzyme deficiency is more common in persons of African descent and can be evaluated by blood testing.
If you have psoriasis, hydroxychloroquine may also worsen this condition.
Again, this study has caused me some pause. I will have to discuss this with my doctor. In the meantime, if you’re interested in reading a lot of medical mumble jumble while crossing your eyes and reading between the lines as I am often doing with medical dictionary close by, take a gander if you will at this study. You can read the full text of the study in PDF form here. No pun intended but it was an eye-opener for me.
Fellow Lupus Sufferer
2 weeks ago
It should be noted that such retinal damage is able to be prevented with regular eye exams. Also, even when damage has occurred, when it is caught (which it should be if you go to the regular eye exams), it is usually reversible. I appreciate you posting great and interesting information about the study. Overall, however, I believe that it is important to note the complete picture about the drug and the side effects, not just the scary stuff. Otherwise your post may potentially scare off someone who could really benefit from this drug.
Mary
2 weeks ago
I would consult with the Lupus Foundation of America before posting this information. The LFA’s website says “With the low doses of antimalarials used in the treatment of lupus, the risk of this complication is extremely low”. Several other sources also indicate that retinal damage is rare and usually reversible if caught by regular eye examinations. Although negative side effects are necessary to know, it is also important to give a balanced view of the medication.
Angela Odom
1 week ago
I do understand and that is why I am considering (or reconsidering) my initial thoughts on the drug. That said, I chose not to take the drug because I know of two people who are legally blind and they were told it was because of the drug. Unfortunately for both, regular eye exams were not offered to them prior to their experiencing vision loss. I was told I would be given a referral to see an eye doctor but the referrals never came. I asked my doctor twice about these referrals and still they never came.
The point was for me to have an eye exam prior to taking the drug and regular eye exams during the course of my treatment with the drug. Since the referrals never came I was not going to take the risk. Added to that, I had an experience with prednisone too that was supposedly rare and typically happens after prolonged use. It was scary, I had just started taking prednisone, and what I experienced was not supposed to happen when it did but it did. Now I read up on everything, I consult the PDR regularly, I ask my mother lots of questions and I ask questions of others with lupus. We are all different.
I wanted to talk about the study and the benefits found via this study because it’s important to know. At the same time, because many folks get to spend 10 minutes with their doctors (more if they’re lucky, less if they’re not) they need to know all of the “scary stuff” just in case. Because of the experience I had with Prednisone, I ask my doctors everything and together we make decisions about my care and how to proceed.