Linda
Lupus and Vaccines: Shingles, Shingrix, and Zostavax
posted in Infections And Lupus on November 27, 2021 by
Updated April 20, 2024
Knowing how lupus and vaccines interact is important since infections are one of the top two causes of death and vaccines are instrumental in preventing infections. Most people realize how incredibly painful shingles is. However, many don’t realize just how dangerous it is. A few years ago, I had a patient die from shingles. It attacked the nerves of her head, then went to her brain, causing encephalitis. Another patient now has a completely paralyzed arm from shingles. It attacked the nerves that go to the muscles of her arm. So, you can see why I am passionate about this topic.
NOTE: Johns Hopkins University Press, publisher of The Lupus Encyclopedia, is a nonprofit publisher. If you purchase JHUP books, like The Lupus Encyclopedia, you support projects like Project MUSE.
APR 2024 Update:
Abatacept does NOT need to be stopped for vaccines
Shingrix
Preventive medicine (like vaccines) is the best medicine.
I’ll first discuss shingles and the Shingrix vaccine. Then I will present the findings in this research study that showed the shingles live vaccine, called Zostavax, to be safe in people taking TNF inhibitor biologics.
Over 95% of Adults Have Had Chicken Pox
Shingles is caused by the virus that causes chickenpox (varicella-zoster). Over 95% of adults who did not get the varicella vaccine have been infected with chickenpox. Most do not know they had it because they may have had just a few chickenpox spots that were not noticed. They usually had a mild infection or mainly had other symptoms such as headache, fever, and cough. I have checked for chickenpox (varicella-zoster) antibodies in many patients who insisted they never had chickenpox. Every time the test came up positive, proving that they did have chickenpox in the past and just did not realize it.
Patients with Systemic Lupus are 3 Times More Likely to get Shingles
After getting infected with chickenpox, the varicella-zoster virus goes to the nerves of the spine and is able to live in an area called the ganglion. It lives there the rest of our lives. Our immune system is great at keeping it in check and preventing it from reproducing and attacking our body.
However, when the immune system begins to not work as well (most commonly due to age), the virus overpowers the immune system, multiplies, attacks the nerve it has been living in, and travels to the area of the skin that that nerve goes to. This shows up as a blistering, painful rash, usually just on one side of the body in a band-like area.
People who have systemic lupus erythematosus (SLE) have abnormal immune systems that are not very good at keeping the virus under control. SLE patients of all ages are at least 3 times more likely to get shingles than an elderly healthy person. Those who are on medicines that suppress the immune system (immunosuppressants such as methotrexate, azathioprine, mycophenolate, steroids, cyclophosphamide, and rituximab) are at even higher risk of shingles.
Note: Hydroxychloroquine (Plaquenil) is not an immunosuppressant and does not increase the risk for infections.
Therefore, it is very important that all patients with SLE get vaccinated against shingles to prevent it from happening. I have many patients over the years who did not get vaccinated and ended up with horrible shingles. This occurred in the young lady whose picture you see at the top of this blog post. She suffered horribly with pain.
All Patients with SLE 18 Years and Older Should get the Shingrix Vaccine
On July 26, 2021, the U.S. Food and Drug Administration (FDA) approved Shingrix in people 18 years of age and older who have compromised immune systems. Since SLE patients, including those not on immunosuppressants, are at high risk for shingles, all SLE patients should get the Shingrix vaccine.
- Shingrix is NOT a live vaccine (I will discuss the shingles live vaccine below)
- Shingrix is given once followed by a booster shot 2 to 6 months later
- The only contraindication to getting the vaccine is if someone is severely allergic to Shingrix
- Unfortunately, most insurance companies are not covering it in people less than 50 years old as of my writing this (11/27/21)
- I suspect the CDC will formally add Shingrix to its adult vaccine schedule recommendations in 2022. Then, insurance companies will most likely cover it.
- So, most 18-49-year-old SLE patients end up paying “out of pocket” for their Shingrix.
- Using an RX coupon service, such as GoodRX can help a lot.
- Most insurances do cover the Shingrix shot in 50+-year-old people.
What about Medicare?
- Unfortunately, Medicare does not seem to cover it very well.
- People 50 years old and older can usually just show up at their local U.S. pharmacy and ask for the Shingrix vaccine. No prescription is needed.
- I usually give my 18 to 49-year-old SLE patients a formal prescription for Shingrix to take to their pharmacist.
- I recommend that my patients stop most immunosuppressant drugs (such as methotrexate and mycophenolate) for 2 weeks after all vaccines, including Shingrix, so that the vaccine hopefully works better. Make sure and ask your rheumatologist. Patients at high risk of a lupus flare, if they stop their medication, may not be advised to stop their immunosuppressant.
- If you are on rituximab (Rituxan) it is best to try to get your Shingrix at least 6 months after your last Rituxan infusion (if possible) and 4 weeks prior to your next infusion. Ask your rheumatologist.
- You do not have to stop abatacept (Orencia) for vaccines anymore. Studies show that it does not interfere with vaccinations.
New Research Shows a Live Vaccine to be Safe on a Biologic
For a long time, there was a concern that live vaccines may be unsafe in people who take immunosuppressants, including biologics. The theory was that the immunosuppressed person could possibly become infected from the live vaccine.
Zostavax is a live vaccine against shingles. It is approved to use with “weak” immunosuppressants, such as methotrexate, leflunomide, azathioprine, and low-dose steroids.
However, the safety of live vaccines, such as Zostavax, had not been studied well with biologic drugs, such as tumor necrosis factor (TNF) inhibitors, belimumab (Benlysta), and rituximab (Rituxan).
In November, Dr. Jeffrey R. Curtis, et al, published the results of their research that looked at 617 participants who were on a TNF inhibitor biologic (Humira, Enbrel, Cimzia, Simponi, and Remicade).
- 310 patients on a TNF inhibitor received the anti-shingles live vaccine, Zostavax. 307 patients received a fake shot (placebo).
- None of the Zostavax patients became infected with shingles!
Bottom line: Zostavax is safe for people who are on a TNF inhibitor.
Shingrix vs Zostavax: Which is best for lupus patients?
- Shingrix is 95% effective. Zostavax is only 65% effective.
- Zostavax tends to wear off over time.
- The safety of Zostavax is unknown with strong immunosuppressants, such as mycophenolate, cyclophosphamide, and rituximab (Rituxan). Shingrix is safe with these drugs.
- Because of these facts, it is best to get Shingrix.
- Some countries have Zostavax but not Shingrix. In those countries, please get Zostavax if you are not on a strong immunosuppressant, but ask your doctor first.
Lupus and Shingles Bottom Line
- SLE patients are at much higher risk of shingles than even elderly healthy people
- This risk exists even in those not on immunosuppressants
- More than 95% of SLE adult patients have been infected with the chicken pox virus that causes shingles (varicella zoster)
- Shingrix is more effective than Zostavax
- Shingrix is FDA-approved for immunosuppressed patients 18+ years old
- I recommend Shingrix to all my SLE patients
- Recent research shows that the live Zostavax vaccine is safe for people taking the biologics called TNF inhibitors
- Zostavax may be the only option for some people due to insurance and where they live
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For more in-depth information on vaccines and lupus:
Read chapter 22 of The Lupus Encyclopedia, edition 2
Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia
If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help.
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LEAVE COMMENTS BELOW
- Have you had shingles? Let others know what it was like.
- Have you had your shingles vaccine? If so, which one and how did you do afterward.
Reference:
Curtis JR, Cofield SS, Bridges SL Jr, Bassler J, Deodhar A, Ford TL, Huffstutter J, Jankeel A, Kivitz A, Kamal S, Lindsey S, Messaoudi I, Mendoza N, Michaud K, Mikuls TR, Ridley D, Shergy W, Siegel SAR, Winthrop KL. The Safety and Immunologic Effectiveness of the Live Varicella-Zoster Vaccine in Patients Receiving Tumor Necrosis Factor Inhibitor Therapy : A Randomized Controlled Trial. Ann Intern Med. 2021 Nov;174(11):1510-1518. doi: 10.7326/M20-6928. Epub 2021 Sep 28. PMID: 34570596.
For more in-depth information on Lupus and Vaccines: Shingles, Shingrix, and Zostavax:
Read more in The Lupus Encyclopedia, edition 2
Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia
If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help.
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If you have lupus, what has your experience been? What do you recommend for other patients?
Do you have any questions to ask Dr. Thomas?
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24 Comments
- donthomasj@aol.comModerator
- donthomasj@aol.comModerator
- Rechell Ann Sumoroy
- donthomasj@aol.comModerator
I assume the COVID vaccine? The answer is “yes” unless you are allergic to any components of the vaccine. Also, some would recommend not getting it if your lupus is severely active, or if you are on prednisone 20 mg a day or more. It is important to stop some immunosuppressants after getting the vaccine to ensure it works better. Make sure to ask your doctor (hopefully a rheumatologist if you have one)…. Donald Thomas, MD
- Cynthia Stubbs
- donthomasj@aol.comModerator
Cynthia: It sounds like you probably received the live vaccine, Zostavax, which was around in 2016; Shingrix the newer, better one was FDA approved in 2017. The problems with Zostavax: it is only 65% effective and it wears off over time. The CDC (and I) recommend getting the Shingrix even if you have had the Zostavax before and if you have had shingles before. Get one now, then a booster in 2-6 months. It is FDA approved for 18+ year olds who are immunosuppressed, and for all 50 year old adults… Donald Thomas, MD
- Cathy
I had a Shingrix vaccine in January and went off my methotrexate two weeks following.
I had a horrible lupus flare that lingered for weeks.
I had no flares going off of methotrexate two weeks after each of my 4 covid vaccines.
I’m hesitant to get the second Shingrix vaccine not knowing if my flare
was that or two weeks off of methotrexate.
Dr how would you advise your patient if this was the case with him/her?
Thank you for your time and valued advise. Cathy- Donald ThomasModerator
Cathy: So sorry to hear that.
1. I’m glad you got your Shingrix. I just saw a lupus patient today who kept putting her Shingrix off (though I constantly asked her to get it) … today she was in tears from horrible pain on her left face and shoulder from shingles wishing she had gotten it. Another RA patient… her arm is paralyzed from shingles attacking her muscle nerves (she regrets not getting it). A male RA patient of mine was in tears from horrible leg pain (also a Shingrix procrastinator). I am mentioning all this just to put things into perspective for you.
2. The following is not to be used in replacement of your doctors’ advice (who know your medical history completely) … but from what you tell me, I would most likely recommend you still get Shingrix #2 go get some extra immunity, but take Tylenol Arthritis 2 tabs three times daily around the clock for a week afterward (to minimize side effects) if no contraindications (such as advanced liver disease or excess alcohol use) but keep taking MTX to lower the risk of a lupus flare afterward.
Do not do this please without showing it to your rheumatologist and seeing what they think.
Good luck with your choice and thanks for commenting, asking, and reading my blog.
Donald Thomas, MD
- Kathy
- Donald ThomasModerator
Kathy: As in so many things in medicine, “it all depends.”
If you were my patient and we could afford to wait a full two weeks, I’d start leflunomide (Arava) 2 weeks after the vaccine (the original ACR guidelines recommended a 2-week delay or holding).
However, if I did not think we could wait 2 weeks, It only wait one week (as per the most recent ACR guidelines).
If I needed it to work ASAP (such as if there was a lot of inflammation, and we couldn’t wait), then starting it right away would be the right decision.Bottom line: ask your rheumy as they would know what best to do.
Link to ACR guidelines (table 3):
https://www.rheumatology.org/Portals/0/Files/COVID-19-Vaccine-Clinical-Guidance-Rheumatic-Diseases-Summary.pdf
Thanks for reading my blog and being proactive in your healthcare and Good luck!Donald Thomas, MD
- Donald ThomasModerator
Kathy: Sorry, I just saw your message. There is no formal recommendation for Shingrix. However, for COVID vaccines, it is recommended to hold Arava for 1-2 weeks after the vaccine. Optimally, it is best to get all vaccines 2 weeks prior to Arava.
- Julie Morgan Byrne
- Donald ThomasModerator
Julie: There are not recommendations on stopping belimumab or timing it properly for Shingrix. However, we also just do not have data supporting one way or the other. For my patients, I play it “safe” by going by the COVID-19 vaccine recommendations. I recommend they get their Shingrix 14 days after Benlysta infusion, and 14 days before the next infusion. However, I do not have data to back this up.
Thanks for asking!
Donald Thomas, MD
- Donald ThomasModerator
Julie: Sorry I just saw your message. Timing has not been determined for the Shingrix vaccine with Benlysta. A prior recommendation was to time COVID vaccines midway between Benlysta infusions. That has since been dropped with the August 2022 guidelines. For SQ Benlysta, holding the dose for 1-2 weeks after the vaccine is recommended.
Don Thomas, MD
- Tricia Webb
- Donald ThomasModerator
Tricia: I do recommend that most of my SLE patients 19 years old and older get the Shingrix vaccine as SLE patients in general are at high risk for shingles. However, make sure to discuss your personal situation with your doctor to determine your personal risk.
Donald Thomas, MD
- Donald ThomasModerator
Dear Dee: This is one of those areas where we really do not know because no one has formally studied it. What I do, is that if my patient is to at high risk for flaring, I ask them to stop it for 1-2 weeks after the vaccine (depending upon the patient’s risk of flare) if they their SLE is under excellent control. Reason being is that the formal guidelines for COVID vaccines makes this recommendation, and those guidelines were developed by experts in the field. I do this in the hopes that they may have a better response to the vaccine than if they were to stay on it. I hope we do have formal studies in the future to give us better guidance. Thanks for your question!
Donald Thomas, MD
- Lisa Kane
Hi. I was perfectly healthy before I got Covid 2 years ago before my age could be vaccinated. I’m 52. I am dealing with long haul Covid and couldn’t walk I got so bad until I started taking hydroxychloroquine. They are now treating it like lupus. I have high crp levels 2. I’m scared to get the shingles vaccine with everything I’m going through but scared to get shingles. Thoughts?
- Donald ThomasModerator
Lisa: So sorry to hear that. This is one reason why I urge my patients to get their COVID vaccines. It is NOT just like the flu. Two years ago, in addition to many deaths, we saw too many people like you plagued with long term complications. I’ve never had any problems like this with the COVID vaccines in patients.
Please keep the same mental approach to Shingrix. As a physician, I just wish people would see what I see from shingles. At least every few months I have a patient come in crying from excruciating pain, often described like a hot iron on the skin. This is often followed by numerous doctor visits and pain med adjustments just to try to lessen the severity of pain, and I always hear the same thing, “I wish I had gotten my Shingrix as you recommended.” I have also had one patient die from a brain infection from shingles and one patient’s arm is 100% permanently paralyzed because the shingles attacked the nerves that go to her arm muscles.
This is why you’ll rarely see a doc who has not gotten it. When I turned 50, I ran to the pharmacy to get mine.
btw, the worse I’ve seen from Shingrix is a very sore shoulder for a few days to a week, and occasionally a flu-like syndrome… all treatable with Tylenol.
I hope this puts it into perspective for you.
Donald Thomas, MD
- Lisa Kane
Thank you so much for the info. I’m going to get the shingles vaccine next week! I do support vaccines. I wish I was old enough to get tne Covid vaccine before I got sick with it and I wouldn’t be dealing with this. It’s been a rough 2 years. I don’t want shingles on top of this. Thank you.
My dear 85 y/o wife was a very powerful 30 y/o when we met. Although slim and graceful, when my 19 y/o athlete son visited, and I asked him to help me carry my oaken upright grand piano out of his bedroom, he said that he could not. I called my wife and asked her to help me. She answered “Sure.”, and we picked it up and walked into the living room with it. She once moved a 300 lb. 6 ft tall bookcase from one room to another and back. Then, I had a 105 deg fever for 3 days. I recovered and Rita began 8 months of cycling fevers to 105 degrees. She had to stop work for 2 years of disability. She developed arthritic-feeling ankles and knees, plus began having uterine tract infections. When given an antibiotic, she developed very painful uterine problems. It was first diagnosed as a “serum sickness-like” illness. It took ~ 40 years before she passed out, and in Chicago Northwestern Medicine ED, they did an additional diagnostic test which gave enough input to diagnose her illness as SYSTEMIC LUPUS ERYTHEMATOSUS (SLE). So, after many years of passing out in stores, falling down the stairs, breaking 12 ribs, 2 vertebrae, her right wrist, 3 femur necks (only started with 2), my dear Rita was diagnosed with SLE and she was started on a very up and down treatment plan. At first, she had some very serious side effects, e.g., 1 1/2 liters of fluid in her Right lung cavity. When she received her COVID VAX she quickly developed pericarditis. 1 1/2 L of fluid had to be drained from her pericardium. Her Flu shot caused the same thing. This time, a “window” was opened in her pericardium. Again, 1.5 L of fluid quickly collected in her chest. This time, they removed her xiphoid process and made a permanent drain into her abdomen. This semi-stabilized her so that her SLE meds worked somewhat.
So, my question is: I have heard of 2 people close to me, screaming in agony from SHINGLES. Rita had the 1st SHINGRIX vax, but was frightened away from a second. While we will ask her rheumatologist, I like your attitude, and would like your opinion re this issue in general: Would it make sense to get the 2nd one 4-5 years later, or not? I hope that you are still writing this column, good Doctor.- Donald Thomas, MDModerator
Bob: So sorry to hear your wife’s story. I sure hope they are better able to control her SLE in the future.
You are correct about how horrible shingles can be. One of my patients, real tough guy with RA and immunosuppressed kept refusing Shingrix. Then shingles attacked one of the large lumbar spine nerves. Most of his leg developed shingles with such incredible pain it caused him to scream out in pain. It took antiviral and lots of pain treatment and many many months before he got his life back. His entie family who was old enough then got the Shingrix.
I can understand your wife’s hesitancy after so many flares after vaccines. This is a tough one to answer other than “the Shingrix vaccine is different that COVID and flu vaccines; so it may not do the same thing.” If I were her physician, I would highly recommend her getting the Shingrix 2-6 months after the first. But I would also have in place a plan for if she were to flare (i.e. immediate steroids). If she were to decline, I would completely understand… it is her body and this is a tough one.
Good luck
Donald Thomas, MD
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