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Does kidney disease put me at a higher risk?
Patients with protein spilling kidney disease are at higher risk for moderate to severe illness from COVID-19, especially when kidney function is below normal. Many patients are on immunosuppressive medications that work by keeping the immune system less active and in turn, makes it harder to fight infections such as COVID-19. Those with advanced kidney weakness, or on dialysis also have weaker immune systems. You may also have high blood pressure and possibly other comorbidities.
Which treatments are considered immunosuppressive medications?
The following medications that are used to treat protein spilling diseases are immunosuppressive medications:
- ACTHAR
- Belatacept
- Cellcept (Mycophenolate mofetil)
- Cyclosporine
- Cytoxan (Cyclophosphamide)
- Imuran (Azathioprine)
- Prednisone, prednisolone (Steroids)
- Rapamune (Sirolimus)
- Rituxan (Rituximab)
- Tacrolimus (Prograf)
I am not on immunosuppressive medications, but I am spilling protein in my urine. Am I still at risk and/or immune compromised?
If you are actively spilling protein in your urine, your immune system is weakened and you are likely at higher risk of developing severe illness from COVID-19. Because the filtering units of your kidneys are not filtering properly, they are spilling all types of protein including immunoglobulins. Immunoglobulins, also known as antibodies, are proteins in the blood that help fight bacteria or viruses and their loss makes your immune system weaker.
I am currently relapsing, should I wait to begin taking immunosuppressants until COVID-19 passes?
You should discuss the best plan of action with your nephrologist because each patient is different. However, your priority (even during the COVID-19 outbreak) should always be to stop your protein spilling and protect your kidneys. If you generally respond to immunosuppressive therapy, it is likely a good idea to begin treatment. Again, please discuss the risks and benefits with your caregiver.
I am currently in remission, should I consider stopping or lowering my immunosuppressive medication?
During the COVID-19 outbreak, it is not recommended to stop or lower your medications. Stopping immunosuppressants can lead to rejection of a transplanted kidney or a relapse of protein spilling. You should never stop your medications without first speaking with your nephrologist first. There may be rare situations where medications can be reduced or stopped, but only under the care of your nephrologist.
Should I stop taking my ACE inhibitor blood pressure medication?
There have been some pre-clinical and clinical studies linking COVID-19 and the renin-angiotensin system. This has led to speculation as to whether use of ACE inhibitors or Angiotensin Receptor Blockers (ARB) increase the risk of moderate to severe illness in COVID-19; NephJC and other professional societies have found that the evidence is insufficient, and in some cases conflicting—some data even suggesting that ARBs may be protect the lungs in viral pneumonia. Patients who are taking ACE inhibitors or ARBs should not change their medication unless told to do so by their nephrologist.
To read more about ongoing developments on this topic visit http://www.nephjc.com/news/covidace2
Will there be medication shortages?
There will likely be some drugs on backorder due to COVID-19. It’s difficult to know which medications will be impacted. It’s important not to panic or hoard medications. Call your doctor and/or pharmacy to see if you can get medications filled early or in 3-month supply. It may be best to begin using a mail-in pharmacy during the outbreak. You can monitor information regarding specific drug shortages here.
Should I Shelter in Place?
The key point to remember is that you cannot get the infection without exposure to someone who has the infection. Therefore, you should make every effort to stay at home and limit your exposure. The degree of quarantine may differ depending on where you live. The best plan is to avoid going out for non-essential reasons and when you do to limit exposure to others and practice strict hand hygiene and clean things that you may have touched before washing your hands (such as your phone and your keys) Getting fresh air and exercise close to your home, with proper social distance from others is certainly safe and may help cope with the stress arising from this situation.
Should I go to my doctors’ appointments?
It is important to first call your doctor to discuss if you need to physically go to your appointment. Many clinics are offering telemedicine, virtual appointments over the phone or on your computer. If your appointment requires testing or some form of physical treatment, you should discuss if it is essential or if you can reschedule for a later date.
I need labs drawn, where is the best place to go?
Many patients require frequent labs to stay on top of their care. You should contact your doctor to determine if your scheduled labs are required now, or if they can wait a month or two. If you must have labs drawn during the COVID-19 outbreak, consider going to a small outpatient lab rather than a lab in the hospital. Always use good hand hygiene and assure the phlebotomist does as well. Schedule an appointment if possible, go first thing when the lab opens and wait in your car for your turn, to limit your exposure.
Is it safe for immune compromised patients to order carry out meals?
Many restaurants are closed to the public to enforce social distancing but are still open for carry out. There is some risk in ordering food from a restaurant because employees may be infected with COVID-19, but there appears to be other a very small risk of food-related transmission. Should you choose to order carry out, be sure it’s from a valued, trusted business, you can transfer the food from the delivered containers to your own plates and you reheat the food prior to eating. Other precautions include paying over the phone and asking them to put the meal in your trunk instead of passing the food through your window. Once home, repeat hand hygiene after assuring you have cleaned all surfaces.
How can I combat anxiety and depression during this time?
The fears, worry, and stress that come with being at increased risk for moderate to severe COVID-19 illness are real and can lead to even greater amounts of anxiety and depression. Being separated from friends and loved ones while social distancing can also cause feelings of isolation and loneliness. We want you to know that you are not alone in your struggles.
NephCure is offering a 4 week virtual series about “Cultivating Resilience During Anxious Times: Strategies for Staying Steady while Navigating Covid19” Please join us on Thursday, March 26, April 2, 9, & 16 at 7:00 PM EDT via https://zoom.us/j/890400605
We also offer several ways to connect with others going through similar journeys with protein spilling kidney diseases at NephSpace our online support community and direct connections through our Patient to Patient Connections Program. To talk with someone immediately, contact our Patient Advocate, Kelly Helm at khelm@nephcure.org or 610-540-0186 x38.
