HCQ III - practical considerations
Updated: Jul 18
1. Discuss HCQ (hydroxychloroquine) use with your rheumatologist.
Rheumatologists vary when it comes to using HCQ for Sjogren’s. It can be very helpful to review this blog post and the previous post, HCQ II - Why treat Sjogren’s? to prepare for your discussion, whether you are new to HCQ or continuing the drug.
Key points to keep in mind:
Few patients have absolute contraindications to HCQ use. It is one of the safest rheumatologic drugs available.
HCQ is not just for symptom control. While there are no long term prospective studies of HCQ in Sjogren’s, recent retrospective studies have shown that HCQ may decrease progression and complications in Sjogren’s.
“Absence of evidence is not evidence of absence (of benefit)” ~ my addition in italics.
2. Consider HCQ risks while keeping in mind the benefits of HCQ.
A lot is known about HCQ risks and side effects from studies in other rheumatologic diseases. This information is helpful for Sjogren’s patients.
Retinal damage is the main serious HCQ risk. Damage rarely occurs during the first 5 years of use. The risk increases with the total accumulated dose, with 20% of patients showing retinal damage after 20 years of use. However, “Even after 20 years, a patient without toxicity only has a 4 % chance of converting in the subsequent year.” (140)
This can be reassuring to patients who continue to use HCQ long term, assuming they follow recommended screening guidelines (Item 3). When damage is caught early, HCQ use can be discontinued before serious visual impairment occurs.
Skin rashes and GI problem such as nausea and diarrhea are the most common complaints, impacting a significant minority of patients. While usually mild and temporary, they can be a problem. The skin rash usually does not indicate actual allergy, but this should be reviewed with your clinician. Itching, hives or tingling of the lips and face may indicate an actual allergy.
Headaches, lightheadedness, irritability, and sleep disturbance are occasionally reported.
Cosmetic side effects include hyperpigmented areas (dark spots) usually on the face, as well as hair loss. HCQ may also improve Sjogren’s-induced hair loss and skin rashes. (144)
pustular skin lesions
skeletal muscle weakness
severe hypoglycemia in patients on hypoglycemic drugs
bone marrow suppression
hemolysis with severe G6PD deficiency
Liver damage/ liver enzyme elevation
3. Follow the recommended retinal screening guidelines for HCQ set by the American Academy of Ophthalmology. See the guidelines for complete details.
A baseline retinal screening exam should occur either before starting HCQ or within the first year of use.
Starting at 5 years, if there are no special risk factors, screen on an annual basis.
Screen more frequently and monitor blood levels of HCQ in patients with kidney disease, tamoxifen use, and possibly liver disease.
Patients of Asian descent require additional screening to look for a more peripheral pattern of damage that can occur in this group.
Low blood levels have been seen in patients with gastric bypass surgery. These patients may require higher doses and should be monitored with blood levels. (143)
4. Practical Tips for using HCQ
The recommended HCQ dose is based on body weight, with the current maximum recommended dose of 5 mg/kg day. Keeping at or below the recommended dose reduces the risk of retinal damage. You can use this online dosage calculator to check your dose. The maximum dose is usually 400 mg/day for larger people.
You don’t have to cut pills in half if your dose is 300 mg/day. You can alternate days, 400 mg then 200 mg. HCQ is extremely long acting so you don’t need to take the same dose each day.
If you have trouble with side effects early on (or simply want to be cautious), ask about starting at a lower dose and slowly increasing to the recommended dose. If your side effects, especially GI, are severe and persistent, consider switching brands. Many patients report doing better on brand name Plaquenil, or the Prasco generic, made by the same company that makes Plaquenil. However, trying an different HCQ brand can do the trick.
Many people find it helpful to take HCQ with food to decrease GI irritation.
Be patient! Remember that HCQ is very long acting. Most people notice no change in symptoms for at least 3 months. Some patients report it taking 9 months to a year before noticing an improvement.
Each patient responds to HCQ differently. For some, symptom improvement with HCQ is remarkable. For others, it is more subtle. A minority report no help with symptoms, but this can’t be reliably reported if HCQ is not taken for at least a full year. There are also patients who think it is not helping, stop the drug, and then feel much worse a few months later.
It is good to keep in mind that HCQ may have other long term benefits.