COVID-19 continues to persist in the community at a low level, mainly in the form of the Omicron variant. The Omicron variant is highly transmissible. Please be mindful of your local community’s spread of COVID-19 and continue to take all precautions such as social distancing, wearing a mask, avoiding crowded spaces, and frequent hand washing. Upgrading from cloth masks to a surgical mask or a N95 type mask is a good idea, especially when coming in contact with other people in indoor settings. The following summarizes and updates key concepts related to COVID-19 that are relevant to individuals with LAM.

Outcomes following COVID-19 infection in patients with LAM

An international group of investigators compiled and analyzed data from patients with LAM around the world looking at outcomes following COVID-19 infection. This study included 91 women with LAM; 77 with Sporadic-LAM and 14 with TSC-LAM. The study was a true international representation of the LAM community and included patients from the United States, Brazil, Europe, and Japan. About half of the patients in this analysis were on an mTOR inhibitor (sirolimus or everolimus) at the time of their infection, at an average sirolimus dose of 2mg daily. Somewhat unsurprisingly, patients on mTOR inhibitors had worse lung function compared with untreated patients (patients with more severe disease tend to be prescribed mTOR inhibitors more commonly than patients with mild disease).

The major findings from this study were:

1. the overall outcomes following COVID-19 in patients with LAM were similar to the general population, with an approximately 1% risk of mortality,
2. reduced diffusion capacity was associated with an increased risk of hospitalization or the need for supplemental oxygen following COVID-19 infection, and
3. the overall outcomes were similar in patients who were taking mTOR inhibitors versus those not on mTOR inhibitors.

These data were derived prior to the widespread availability of vaccines and other antiviral treatment options, and likely represent an assessment of the complications following infection with the alpha variant (the first wave of COVID-19). While the implications of these results for the current Omicron variants are not fully known, the availability of vaccines and current treatment options should translate to improved, or at least no worse, outcomes for patients with LAM as compared with the above-mentioned data.

What to do if you have tested positive

Isolate yourself from other family members. Most patients with COVID-19 have mild disease and are able to recover at home. Take plenty of rest, stay hydrated, and use over-the-counter medications such as acetaminophen for symptom control. Inform your physician(s) about your diagnosis so they can guide you towards the best next steps taking into account your disease severity and other medical conditions.

Antivirals: Two oral antiviral medications, Paxlovid (nirmatrelvir plus ritonavir) and Molnupiravir have received emergency use authorization by the United States Food and Drug Administration for the treatment of COVID-19. These drugs are meant for the treatment of adults with mild-to-moderate COVID-19 who are at high risk for progressing to severe illness, and have the highest efficacy if taken early in the disease course. These drugs should be administered as soon as possible after a positive test and within 5 days of symptom onset. More information on these drugs is available here and here.

The choice between the above treatment approaches is likely to be dictated by several factors such as the duration of symptom onset, other comorbidities, concomitant medications, and local availability. It is possible that there might be potential drug-drug interactions between the antiviral medications and your other medications (including sirolimus). For instance, treatment with Paxlovid can raise the blood levels of sirolimus, and you might need to either hold sirolimus or reduce the sirolimus dose for the duration that you are on Paxlovid. Please seek guidance from your healthcare providers when making treatment decisions.

Vaccination

Vaccination remains the best public health measure to protect people from COVID-19, slow transmission, and reduce the likelihood of new variants emerging. The bivalent mRNA vaccine booster (both Pfizer and Moderna) offers more specific protection against the Omicron variant. If you haven’t received the bivalent booster dose, you should seriously consider getting it. More details on COVID-19 vaccinations can be found here.
The future vaccination strategy for COVID-19 is unclear. It is likely that COVID-19 will stay with us and that we will likely need an annual vaccination similar to the flu shot. We will continue to closely monitor the COVID-19 situation and will provide regular updates as new developments arise.