Published December 17, 2020 | While distribution of the Pfizer COVID-19 vaccine across the country has begun, many in the PKD community have questions about the COVID-19 vaccine. Chris Rusconi, Ph.D., chief research officer at the PKD Foundation, sits down with Patrick Dean, M.D., surgical director of the Kidney/Pancreas Transplant Program and a consultant and associate professor of surgery in the Division of Transplantation Surgery at Mayo Clinic Rochester, to answer your questions.
Chris Rusconi: Should our community get vaccinated for SARS-CoV-2 (the virus that causes COVID-19)?
Dr. Dean: In short, yes—get vaccinated when you can. In addition, your family members should get vaccinated when they can.
It’s recommended by the CDC and the National Institutes of Health that individuals over the age of 16 receive a vaccine against SARS-CoV-2. Pregnant women should talk to their doctor to determine if it’s appropriate to receive the vaccine. Those who have had allergic reactions to any of its components should not receive the vaccine. In addition, persons with severe allergic reactions to other substances (i.e. medications) may need to be monitored longer after receiving the vaccine and should discuss this with their physician.
Chris: Why are you recommending that your patients receive the vaccine?
Dr. Dean: By getting vaccinated, you’ll be less likely to get sick with SARS-CoV-2, and if you do get sick, it may be a less severe form of illness. Also, by getting vaccinated yourself, you’re also helping to protect the people in your household and those you’re in contact with.
Chris: For those in our community who have reduced kidney function (Stage 4 or Stage 5 chronic kidney disease), should they get vaccinated?
Dr. Dean: Yes
Chris: If someone is on the waiting list for a transplant, should they get vaccinated?
Dr. Dean: Yes
Chris: What about those who have received a kidney or liver transplant and are on medications that suppress their immune system. Should they get vaccinated?
Dr. Dean: Yes.
Chris: Even though those individuals were excluded from the COVID-19 vaccine clinical trials?
Dr. Dean: The expert consensus opinion of the FDA, the CDC, the American Society of Transplant Surgeons, and the American Society of Transplantation is that transplant recipients should receive the vaccine. Although, if they’ve had a transplant in the last few months, they should discuss when they should receive the vaccine with their transplant team.
Chris: What if someone has already had COVID-19- should they still get vaccinated?
Dr. Dean: Yes. It’s not known if, or for how long after infection, someone is protected from getting COVID-19 again.
Chris: When will the vaccine become widely available?
Dr. Dean: Currently, it’s unknown when the vaccine will be available to the majority of the population, but it is likely that the majority of your healthcare providers and first responders will be vaccinated by February–March 2021. Until that time, each state has developed protocols to determine which groups will receive the vaccine first.
Chris: What should we do while waiting to receive the vaccine?
Dr. Dean: Please continue practicing the recommendations of the CDC and NIH regarding social distancing, masking, and hand washing. These measures have been shown to decrease or slow the spread of SARS-CoV-2 and many other infectious diseases and should be continued after receiving a vaccine as well.
Please take care of your general health. If you’ve not received an influenza vaccine, please do so. Make sure to monitor conditions such as diabetes mellitus and hypertension carefully.
Chris: Can the COVID-19 vaccine give me SARS-CoV-2?
Dr. Dean: In short, no. The currently approved Pfizer and (likely) soon to be approved Moderna vaccines do not contain any live virus and cannot cause infection. Some vaccine recipients may experience symptoms such as fatigue, muscle aches, mild fever, chills, and/or headache and feel like they have the “flu.” These symptoms are a natural response to receiving the vaccine.
Chris: If the Moderna vaccine gets approved, will I be able to choose between them? Is one better than the other?
Dr. Dean: For all practical purposes, the Pfizer and Moderna vaccines are equivalent and it’s likely that you’ll be offered one or the other rather than both depending upon which vaccine has been allocated to your state.
Chris: Should someone scheduled to donate a kidney in the next few months wait to get the vaccine?
Dr. Dean: In general, just like the general public, potential and actual living donors should receive a vaccine when they can. If they’re offered a vaccine within two weeks prior to scheduled donation, they should contact their transplant center for advice.
To find out when you can expect to get the vaccine, check out your state’s health department website.
Thanks so much for this! Advice tailored to PKD folks and those of us lucky enough to have a transplant!
Thank you for the info.
Do we have to get this vaccine yearly like the flu vaccine?
We don’t know the answer to this just yet. Please refer to the CDC site which will be updated as we learn more about immunity: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/8-things.html?fbclid=IwAR2pXogPPhwl394zJuReAdvd6wP-ASGzmms_37Gw1DgT3KpphCD8v430dBQ
Hi! Sir/Madam, I am a PKD patient, I am now residing in UAE and my place here using Sinophram & Sinovac Vaccine it is safe vaccine for me??? Your kind Advise, highly appreciated.. God Bless…
I had the Pfizer vaccine in a trial, have PKD, and am fine. I had only a sore arm after the first shot and chills and low fever after the second shot.
Since there were no trials for transplant patients done, how do you know that it is safe for a immune suppressed patient? My kidney specialist is not so sure that it is safe. I want more information.
There is no evidence the vaccine will harm an immunosuppressed person – the only question is whether or not it would provide full immunity, which we don’t know at this point. We always recommend you consult with your health care team.
Is there any evidence that the vaccine won’t harm an immunosuppressed persons? These newer mRNA shots have no long term side effect studies on transplant patients, do they?
When will the study be completed as to whether or not the vaccine will provide full immunity to immunosuppressed people? I got a kidney transplant October 2020. I have ben vaccinate.
Hello All,
I am a 39 yr old PKD patient and I’ve been on blood pressure meds for over 20. Although I’ve been on blood pressure meds for awhile, my kidney function remains 100%. I’ve been going back in forth on whether or not I should get Covid-19 vaccine and if so which one. (Pfizer or Moderna). After months or researching, I’m still not sure. I asked my primary doctor and kidney specialist and both can’t be certain.
I am scared to get vaccinated and my kidney function declines.
I came across this article and thought I’d share. Although, I’m still not 100% convinced but I’m leaning more towards getting vaccinated. I would appreciate your feedback.
https://www.webmd.com/lung/news/20200914/covid-19-takes-heavy-toll-on-kidneys#:~:text=COVID%2D19%20can%20damage,due%20to%20the%20pandemic.
If there were no research for PKD patients how are we to know if there won’t be side effects to lower GFR’S or damage kidney-liver?
There is no evidence the vaccine will harm kidney function. We always recommend you consult with your health care team.
I have PKD, 3 years post-transplant, practicing physician in a large hospital system and have had the first injection of the Covid-19 vaccine. No issues at all. I would highly recommend getting the vaccine when you are able.
I’m just wondering if anyone with PKD who is on blood pressure medication received the trial Pfizer vaccine? And if so, did you have any side effects? I am just having a hard time making a decision and would like a little more information from patients with PKD who have received the vaccine.
Hi Darlene, I have PDK (GFR ~20mL/min) and high blood pressure — take 5mg a day of Perindropil (angiotensin-converting enzyme (ACE) inhibitor). I received the first dose of the Pfizer vaccine just yesterday, and for now, everything´s fine (just a light pain on the arm, like everyone else and as for any other vaccine). I am a molecular and cell biologist and in my opinion the mRNA vaccines seem very safe, I can´t see any reason to think otherwise.
What about PKD patients who are currently taking the Jynarque medication? I assume there are no studies as to whether there would be any incompatibility issues? My sister and I are doing quite well on this program, and would be devastated if there were to be any issues from receiving the COVID vaccine.
Hi Susanne, how long have you been on the Jynarque? Has your GFR decline or maintained steady?
I am 55 with PKD. Though my kidneys show extensive cysts, I have always been asymptomatic, have normal blood numbers, control my blood pressure, don’t smoke/drink and am an endurance athlete. Would I be eligible for an early vaccine having PKD, but not seeming to be at increased risk from COVID. I don’t want to take the vaccine in place of someone who is at much higher risk. Thank you.
I have several family members that are either pre-end stage PKD patients or post transplant. I’ve noticed that there are special categories for “People with high-risk conditions” to qualify for early appointments for the Covid-19 vaccine. Does having PKD kidney disease qualify one as a “high-risk condition” or do you have to be in end-stage? What about being post-transplant? If so, how does one go about getting designated for “high-risk”. We are all in CA.
Hi, I’m in Stage IV PKD and have a qualified donor. Would this vaccine create antibodies that could possibly disqualify her to donate her kidney to me? Thank you for your answer.
Any advice about the AstraZeneca vaccine for us in the EU? IS this one safe for PKD patients?
I am 70 years old with PKD. GFR was running about 18. I was experiencing some typical cyst bleeding when I got my first Pfizer shot. It caused painful clotting.and I was afraid to take second shot. I debated whether to get the second shot.but everyone, including this site and Pfizer said to get it. The second shot caused severe clotting that caused my kidneys to fail completely. I am currently on emergency dialysis. I knew eventually I would be on dialysis, but not today. My advice is to stay away from the shot if cysts are bleeding. My older sister also had PKD but handily survived real Covid. It is a crap shoot.
I am going to try to post this again because I think it is important and I think the moderator may have taken it down. I am 70 years with stage 4 PKD. My GFR was 18. I had trouble with the first Pfizer shot being nauseous for 2 weeks. At the time of getting the shot, I had some bleeding cysts. After the shot I had extremely painful clots blocking off one kidney. I passed them and the pain went away. I was afraid of the second shot, but got it anyway. Within 12 hours I was in the emergency room in extreme pain and vomiting. I had blood clots that stopped all flow through kidneys. I waited for 14 hours to get fluids in the hospital and was quite dehydrated. GFR dropped to 7 overnight and I went on emergency dialysis. If your are bleeding, and have low kidney function, I would not take the vaccine right at this time.
I’ve a low immune system and just found out I’ve a cyst on my kidney.Is it safe to get the Covid vaccine I’m nervous if I do I’m afraid of dying.
I have PKD, stage 2-3, with only BP medications for the last 22 years, when I found out about my diagnosis. I am currently 46 years old. Asymptomatic. I am debating about the COVID vaccine as I am not completely comfortable with the mRNA method. I am waiting for the NOVAVAX vaccine, not mRNA, to be, hopefully, approved as it is in phase 3 clinical trials in UK and USA. I am concerned that if I do proceed with the vaccine, about the acute and long term side effects that it may produce as there is no long term data. There is definitely a risk of hypercoagulation with either the virus and/or vaccine. I am concerned that if I do get the vaccine, it will worsen my kidney function.
As a note, I am a pediatric nephrologist.
Could you please explain why would be a better choice NOVAVAX vaccine than mRNA for PKD patients? Thank you!
F. Gonzalez Its been a few months now. I’m in the same situation as you. May I ask which route you ended up going with?
Dr. Gonzalez, you opinion would be greatly appreciated. What did you end up doing/choosing? I have the same fears as you’ve described.
Was just wondering who is eligible for the anti viral medication and how it is decided when and if to give it. Despite having all my vaccines I recently came down with Covid, their was some confusion as to whether I needed the anti viral by various doctors. I didn’t receive it but some doctors couldn’t understand why I hadn’t been given it as they said I met the criteria (gfr 24). My blood pressure became very high at about day 6. Fortunately I think I have come out the other side though im unsure of any effect on my kidney function yet. This was a very worrying time and just needed some clarity
Hi Alison, thanks for your question. Unfortunately, we can not give out specific medical advice and we highly recommend that you continue communicating with your health care provider to ensure you get the right information for your situation.
With that being said, antivirals are authorized by the FDA for the treatment of mild to moderate cases in non-hospitalized patients who are at a high risk of severe disease (such as patients on immunosuppressive medications). They advise antivirals to be started as soon as possible after a positive COVID-19 test and within 5 days of onset of symptoms. You can find more information here: https://pkdcure.org/coronavirus/
What is your stance on Evusheld for transplant patients?
EVUSHELD can be used in adults and adolescents (12 years of age and older and weigh at least 88 pounds) for the prevention of COVID-19 in patients that are not infected with SARS-CoV-2 and have not had recent contact with someone that is infected. Read more about Coronavirus and PKD here: https://pkdcure.org/coronavirus/
Can Polycystic Renal Disease be cause by the covid-19 vaccination? I only ask because before the vaccine, I had no signs of having this disease. Less than a year later, Im stage 2 renal disease.
PKD is a genetic condition and cannot be caused by a vaccine. While more research is needed to learn more about the effectiveness in people with advanced CKD, those on dialysis, and transplant recipients — these vaccines have been demonstrated to be safe in this population. Data from clinical studies demonstrate that getting a COVID-19 vaccine may help keep you from getting seriously ill if you do get COVID-19. You can find more info here: https://pkdcure.org/coronavirus/
I am wondering the same thing. My daughter age 28, has been diagnosed Polycystic Renal Disease 1 year post vaccine. We have no family history of this. She has also had body scans as a teenager for other issues which showed nothing along these lines.
Thank you for such a valuable information…!!
i really appreciate you for this post.