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Plaquenil and the eye

I have a question about the drug, Plaquenil, AKA hydroxychloroquine. My interest stems from the book I am writing, Nurse Mary’s Guide to Rheumatoid Arthritis. After reading several additional medical reports about Plaquenil, I realized I needed to look further and to expand its section in the medication chapter of my book.

Another reason for my interest was that I had been taking Plaquenil for six years for my RA.  I was taking it in addition to methotrexate injections and Medrol. I had  also been taking it while I was taking tamoxifen for breast cancer. I no longer take tamoxifen as I developed a rare serous uterine cancer associated with using the drug.

None of my doctors questioned the risk involved in taking both drugs. I also made the mistake in thinking Plaquenil was a mild drug. In fact, it does treat mild RA and more aggressive RA when given in combination with other drugs. The drug itself is not mild.

Hydroxychloroquine  was developed as an antimalarial in 1955. It was a refined version with fewer side effects than the widely used drug, Atabrine.  Malaria was a huge problem for soldiers serving in the South Pacific  during World War II. Soldiers were pretreated and treated with Atabrine.  The treated soldiers that had rheumatoid arthritis or lupus were shown to also have improvement with their diseases. This association was noted by the medical community. Hydroxychloroquine, Plaquenil, was eventually approved  for use in lupus and rheumatoid arthritis patients. Today it is an accepted drug in both of these diseases.

The usual side effects of nausea and diarrhea abate after a month or two on the drug. One of the  important complications involves the eye.

The concern is the potential for eye damage.  Irreversible retinal damage has been observed in some patients. Risk factors increase with those who received long term treatment with this drug, those on concurrent treatment with tamoxifen which has been known to induce retinal toxicity, or those with subnormal glomerular filtration rate. For those who have used the drug less than ten years, there is a 2% risk of eye damage. That means that two people in every hundred treated will have eye damage.

Asians more often experience an atypical pattern of retinopathy. It is called pericentral neuropathy. Eye exams need to be extended beyond the macula so that eye damage is not missed.

It is strongly recommended that a base line eye exam is given when a patient starts a treatment plan of Plaquenil. Exam includes examining the eyes  for visual acuity, central vision field, color vision, and fundoscopy. The exam, according to the drug manufacturer, should be repeated at least annually on everyone taking the drug. The medical community recommends a baseline exam and then a yearly exam after five years. Those at high risk should receive a yearly exam.

Plaquenil has a long half-life. It remains in a person’s body for eight months.

I no longer take the medication. Plaquenil is an important drug for those suffering with lupus. It is also an important drug for certain types of malaria. I have RA. It is not an important drug for me.


Sanofi-Aventis. Product monograph; Plaquenil.

Shippey III, MD, Eugen Alexander; Wagler, DO FACP FACR, Vanya D.; Collamer, MD, FACP, FACR, Angelique N.;   Hydroxychloroquine: An old drug with new relevance; Cleveland Clinic Journal of Medicine, Volume 85, Number 6, June 2018.

Plaquenil ( FDA package insert.

Nurse Mary’s Guide to RA coming in November

I have been working on this book for several years. It will be published in November in digital format as well as hard copy. The following is in the book.

We should all be saints. Saints generally had tough lives so that is not what we want. We need to drop the fear, anger and hopeless feelings. Many of us have RA. We eventually toughen up and make our lives good ones, even with wheelchairs, canes and jar openers. We are not helpless. Sometimes it takes a while to understand this, but it will happen. Listen to the stories of others. I have read many. I am proud to be in their company as they are good role models for those of us who struggle with RA.

This is the important part of the manual. It is your attitude, your commitment and your perseverance that will make all the difference in the world what your outcome, your quality of life will be. This is not easy. In fact, it may feel like just too much. It is not. After all the dust settles, we really don’t have any other choice but to manage our disease.

Rheumatoid arthritis is a serious, systemic auto-immune disease.  It is a chronic disease in that it will last a life time. It is a tough diagnosis. I was so sick when I was diagnosed that I was relieved that my agony had a name.  RA must be dealt with every single day. Treatment is determined by the severity of onset. With active RA, there is much inflammation in the body. Inflammation is not good. Treatment needs to be initiated quickly to slow the process of inflammation and to stop it if possible.

It is wise to understand what the disease entails and why it is managed the way it is. RA is progressive. It may progress rapidly, or it may progress slowly. Medication makes a difference.

Considering how RA manifests differently in different people, it makes sense that different people respond to different drugs differently. It requires patience and determination to find the right combination of drugs for you. Some drugs are effective for several years in one person, but the same drugs may be effective for a year in other people. It also takes time, trial and error and determination to find the right tools to manage your RA. Soon there will be tests to determine which drug will work for which person. We are not there yet.

Physicians are taught to make a diagnosis and to prescribe medications. As my doctor said, she is not trained to do more. She is the authority in the art and the science of medicine. There are things she will know that you will never find on the internet. She has synthesized a large amount of information and coupled with her experience she is an excellent team member to have in your camp. It is very important that your doctor listens very carefully to you. You will be the authority in managing your life when you leave her office.  There is a lot more to manage your RA than medications.

It takes that same determination and perseverance to find those modifications in your lifestyle that will allow you to have a satisfying life.

Remember you want your journey down the RA road to be smooth as possible, without too many bumps.

I discussed this book with my rheumatologist. She likes the idea. She said doctors cannot write this kind of book. It is a book that needs to come from the patient’s side of the table.


I’m Back

I have completed chemotherapy and I have completed radiation. At this point I think I am cured. It’s been a long year. I am grateful as I have friends who are not as fortunate.

In addition to  being diagnosed with another cancer this year, my computer died. The new one arrived Friday. It is nice to be up and running again.

My RA doc has moved on to the VA. She is going to be working on research projects as well as seeing patients. I have followed her as I am a Vet.  She is happy. She had spent several of her student years working at the VA and appreciates its culture.

She has ordered Voltaren Gel for the pain I have in my feet. The pain is a problem for me when I go to bed. Voltaren is a topical gel of Diclofenac, an anti-inflammatory. It arrived this morning. I will let you know if it works for me.

Albuquerque has been one of the cold spots in the nation. It’s been down to 2 degrees at night and the teens during the day. We’ve had three inches of snow here. Thankfully, all is improving. The nights are back up to the 30s and days to 40s. I will never complain about our lack of snow again.

I hope all is well with all of you. Working with a keyboard is so much nicer than going for chemo.